Return to Previous Page

Write Your Way through Cancer

by David Tabatsky

Wellness image

Expressive writing can be a wonder­ful tool for clarifying your thoughts, relieving stress, and improving communication skills. Each of these benefits alone is a great reason to write. Who can argue against clearing up the haze of our daily overload of informa­tion, stimulation, and trepidation? Who can object to writing their way to relax­ation? Who can rail against the benefits of better communication?

Twenty years of research, including a study conducted at the Lombardi Cancer Center at Georgetown Univer­sity in Washington, DC, and published in The Oncologist, reveals that dealing with our deepest thoughts and feelings through expressive writing can contrib­ute to improved physical and emotional health. For example, study participants who completed just one 20-minute writing session reported improvement in their general outlook on cancer and on their physical quality of life.

TIP: Play your favorite music as you write.

Author of Article photo

David Tabatsky

What if writing could do the same for you? What if you began expressing yourself in writing and that led you to communicate more effectively with your family, friends, and doctors? What if writing relieved some of your stress and helped you feel more in control of your situation? What if other people in your life were inspired by how well you’re coping with your challenges through writing and that helped them cope with their own?

Staying connected to your true self through expressive writing allows you to be present in three tenses at once: past, present, and future. Together, they represent one state of being, of living in the moment. Through expressive writing, you have the chance to get in touch with everything you’re dealing with – the good, the bad, and the ugly.

TIP: Read your writing aloud.

Two words can get you started: I am. I begin all of my writing workshops by prompting participants to describe them­selves, beginning with these two words, because in times of great change and stress, our sense of self is turned upside down and we question the way we pre­viously identified ourselves. Your “I am” description can start at your emotional center, or it may take off from a more philosophical place. It may incorporate a wide-angle view or focus on the minutiae of the moment. There are no rules. But there are compelling rea­sons for getting in touch with yourself through writing, especially when your very existence is being challenged.

If you’ve been diagnosed with cancer, this is the time to focus on you. If you’re a caretaker, focusing on your­self now and again is a good idea, too. Writing down your fears, your ques­tions, and your dreams will enable real communication with loved ones, friends, and doctors. Eventually, you may wish to share your writing with others, inspiring them with your per­sonal perspective.

TIP: Leave notebooks around the house
and fill them with your thoughts.

Right now, you may be feeling too raw to imagine sharing your innermost thoughts in this way. You may simply feel intimidated. The idea of writing may rekindle a nightmare called high school English class, during which your teacher made you write down that yucky stuff called “feelings” in a journal, and you forced yourself to produce just enough to secure a passing grade.

Relax. There are no grades to be earned here, only benefits to be ex­perienced. You just have to give your­self permission to express how you feel. This is your chance to get started. Each of us needs to communi­cate and share our feelings, no matter how tough that may be.

♦ ♦ ♦ ♦ ♦

David Tabatsky is the author of Write for Life: Communicating Your Way Through Cancer and has coauthored Chicken Soup for the Soul’s The Cancer Book, The Intelligent Divorce, and Beautiful Old Dogs, among many others. He teaches writing workshops at cancer centers around the country. Learn more about David at tabatsky.com.

For more inspiration and writing resources, visit WriteForLife.info.

This article was published in Coping® with Cancer magazine, July/August 2014.

Drug Combination May Be Highly Effective in Treating Recurrent Ovarian Cancer


Photo by Cancer Type

Research presented at the American Society of Clinical Oncology’s 50th Annual Meeting suggests that the use of a combination drug therapy can provide significant improve­ment in women who have recurrent ovarian cancer.

A study sponsored by the National Cancer Institute compared the effec­tiveness of a combination of the drug olaparib (which blocks DNA repair) and the blood vessel inhibitor drug cediranib to the effectiveness of olaparib alone. Results showed a near doubling of progression-free survival benefit (the length of time during and after treatment that the cancer did not get worse) for the combination therapy over the use of the single drug alone.

“The findings of this study are excit­ing because they support the idea that combining these two targeted oral ther­apies results in significant activity in ovarian cancer, more so than olaparib alone,” says Joyce Liu, MD, MPH, the study’s lead investigator and medical oncologist at the Susan F. Smith Center for Women’s Cancers at Dana-Farber Cancer Institute in Boston, MA. “We are looking forward to further explor­ing this combination in ovarian cancer and potentially increasing effective treatment options for our patients with this cancer.”

In the study, 90 women with recurrent ovarian cancer were randomly assigned to one of two study arms, the first taking capsules of olaparib (400 mg twice daily) and the other taking a combination of the two drugs (200 mg olaparib in cap­sule form twice daily and 30 mg of cediranib by tablets once daily). Study participants, whose median age was 58, were enrolled from October 2011 to June 2013. As of March 2014, median progression-free survival was 9.2 months for the olaparib group and 17.7 months for the combination therapy group, which is a significant advantage. Although participants on the combination therapy experienced more side effects – most commonly fatigue, diarrhea, and hyper­tension – these side effects were all manageable.

“Of particular note is the fact that both drugs used in this trial are in pill form and could offer an alternative to intra­venous chemotherapy,” says Percy Ivy, MD, associate chief of NCI’s Investiga­tional Drug Branch. “Therefore, this combination therapy could be used anywhere in the world where patients can be safely monitored for the side effects of olaparib and cediranib, such as diarrhea and hypertension.”

Based on the results of this study, two phase III trials are being planned to study women with platinum-sensitive and platinum-resistant ovarian cancer by the NRG Oncology Group, one of NCI’s new National Cancer Trial Network Groups.

♦ ♦ ♦ ♦ ♦

This article was published in Coping® with Cancer magazine, July/August 2014.

I'm Not Waiting to Live

by Melissa J. Gallagher

Inspiration image

Melissa Gallagher with her daughters, Leah Faith and Paige Hope, and her husband, Matthew

Patience is a necessary virtue. We all have heard countless times throughout our lives that in order to succeed, we must be patient. To achieve what we want in life, we sim­ply must wait. I find myself repeatedly telling my own children, “Please, be patient. Wait.” But there are certain situ­ations in which we can’t wait; we have to act. Fighting cancer is one of them.

In 2005, at age 26, I was diagnosed with a rare type of cancer: small cell carcinoma of the ovary, hypercalcemic type. After repeatedly being told that my cancer had an average survival rate of three months, I was determined to create some new statistics.

Various factors contributed to my survival, including my age, overall health status, stage of disease, location, and plain good luck. But I believe there is one reason why I am alive today: I didn’t wait.

I didn’t wait to address my symp­toms. I didn’t wait to find oncologists who were willing to mix statistics and data with just the right amount of hope and optimism. I didn’t wait to live.

When I began experiencing symp­toms of what I would learn was ovarian cancer, my gynecologist determined that a large cyst was to blame, and I was scheduled for surgery two weeks later. Instinctively, I knew that two weeks would be too long to wait. I ended up having surgery only a week and a half later, and by a stroke of luck, it was performed by an oncologist who dis­covered my tumor.

I was determined to create some new statistics.

Once I was officially diagnosed with this rare cancer, I was thrust back into the waiting game. I called physicians around the world and waited when I was placed on hold. I scheduled appoint­ments and waited for them to arrive. I waited for my name to be called in waiting rooms, and then I waited again to see doctors in exam rooms.

I had come to accept that a certain amount of waiting would be necessary, but when I contacted a major cancer center and was told I’d need to wait a few weeks just for an appointment, I knew that this was one of those times when waiting just wasn’t an option. So I called back, sometimes several times a day. I explained my situation and its urgency over again until I hit the jackpot and appealed to that one person who was willing to listen. I got in.

Once I began treatment, which included three different types of chemo-therapy drugs and an additional surgery, I knew I couldn’t wait until it was over to resume my life. So I kept on living. It was hard to live life to the fullest some days, but other days felt more full. I’ll never forget stepping outside the hospital doors on the day of my last treatment, the sun shining and the fresh March air on my face. Certain aspects of life were magnified and brilliant. The sun was almost blinding. Air had a life of its own. My feet were overly sensi­tive to the ground they touched. All of my senses were heightened. I knew sincerely that I was still alive.

When my cancer came back four years later, I found myself in the emer­gency room, waiting. I waited for a scan, and then I waited for the results. I called doctors and waited on hold. But I knew I couldn’t afford to wait to have the large tumor that was growing inside me removed. My life depended on it. I contacted the same major can­cer center, and rather than accept that I would have to wait for an appointment two weeks later, I managed to find a new physician and have a successful surgery a few days later.

People who don’t know me can’t believe that I was diagnosed on a Thursday and operated on by a new doctor the following Monday. The people who do know me can’t believe I waited that long! I won’t wait to live. You shouldn’t either.

♦ ♦ ♦ ♦ ♦

Melissa Gallagher is a two-time small cell ovarian cancer survivor living in West Islip, NY.

This article was published in Coping® with Cancer magazine, July/August 2014.

Just Got Diagnosed?

Here’s How You Can Prepare for the Road Ahead

by Gary R. McClain, PhD

Wellness image

“I just got diagnosed with cancer. Now what do I do?” As a therapist who works with people facing illness, I hear this question often. People come into my office struggling with their reaction to their cancer diagnosis, as well as all those strange and uncomfortable feel­ings that come with it. We talk about their fears and hopes regarding treat­ment, and we talk about what a cancer diagnosis means for their future.

Why Me?
If you’re like most people who have recently been diagnosed with cancer, you might be asking that unanswerable question, along with a few others: What will happen to me? What will my life be like? Will I be changed? It’s normal to feel this way. But it’s also possible to face your cancer diag­nosis, and all it will mean for you, from a position of power. This requires that you first form an optimistic outlook and arm yourself with information. It means you’ll need to connect with the people in your life who can help you as you develop a sense of a greater meaning beyond your day-to-day experience. It also means you’ll need to devise a realistic but hopeful plan for your future.

Allowing yourself to experience your negative emotions may give way to hope, optimism, and a renewed passion for life.

Author of Article photo

Dr. Gary McClain

Don’t Be Afraid to Feel
In many ways, the emotional reaction to a cancer diagnosis resembles the grieving pro­cess. A cancer diagnosis can feel like a loss; one meeting with your doctor suddenly changes the course of your life, at least for the near future. You may feel like your life has been turned up­side down. And you may grieve your pre-cancer lifestyle.

You can start preparing for the future by acknowledging the emotions you’re experiencing right now. It’s only human to have feelings of fear, anger, disappointment, and confusion when you’re told you have cancer. These feelings are normal, so don’t judge yourself harshly for having them. And don’t try to just ignore them, either. Your feel­ings won’t disappear just because you don’t want to deal with them. But when you acknowledge your true feelings, even those you wish you didn’t have, the effect is almost magical. Those difficult feelings lose their power over you. Sure, they might reappear at times, but allowing yourself to experience your negative emotions may also give way to hope, optimism, and a renewed passion for life.

Start Talking
Get to know other people with cancer, and learn how they’re coping. Get tips from the peo­ple you meet who are coping well with their own diagnosis. Talk to positive role models. Talk to your friends and family, and have conversations about how you can support each other in all aspects of your relationship, not just those related to your diagnosis. You might even want to consider joining a support group, linking up with online patient communities, meeting with a mental health professional, or all of the above. You don’t have to go through this alone.

Don’t Neglect Your Spirit
When you feel connected to your higher power, your sense of meaning expands beyond what you see and experience. There are many ways to define and experience spirituality. You can pray, practice medi­tation, read the works of spiritual teachers and apply their philosophies to your life, or become a member of a religious com­munity, church, or synagogue. Simply listening to music that is meaningful to you, doing something relaxing, enjoy­ing a hobby that makes you forget about everything else going on in your life, and spending time with loved ones can also be spiritual experiences.

A cancer diagnosis can feel like a punch in the gut, followed by the sense that life as you have known it has come to an end. Here is what you need to keep in mind: You are not a diagnosis. Your diagnosis is only a part of who you are. Remind yourself every day that you are a fascinating, multidimensional person with a past, a present, and a future that belongs to you and you alone. Try to see your diagnosis for what it is, and then look beyond it. Embrace your life with all of its triumphs, setbacks, surprises, and detours.

♦ ♦ ♦ ♦ ♦

Dr. Gary McClain is a therapist, patient advocate, and author living in New York, NY, who specializes in working with individuals who have been diagnosed with chronic and catastrophic medical conditions, their care­givers, and professionals. You can visit his website at JustGotDiagnosed.com.

This article was published in Coping® with Cancer magazine, July/August 2014.

New Guidelines Address Long-Term Needs of Prostate Cancer Survivors


Photo by Cancer Type

New American Cancer Society Prostate Cancer Survivorship Care guidelines outline post-treatment clinical follow-up care for the myriad long-term and late effects that an estimated 2.8 million prostate cancer survivors in the United States may face.

The guidelines, published in the American Cancer Society’s CA: A Cancer Journal for Clinicians, are designed to promote optimal health and quality of life for prostate cancer survivors by facilitating the delivery of comprehensive post-treatment care by primary care clinicians. Based on recommendations set forth by an expert panel convened as part of the work of the National Cancer Survivorship Resource Center, the guidelines address health promotion, surveillance for recurrence and screening for second primary cancers, and the assessment and management of physical and psychosocial long-term and late effects of prostate cancer and its treatment.

The following recommendations for primary care clinicians are included in the guidelines:

Since information needs evolve as men transition from treatment through various stages of survivorship, regularly assess survivor and caregiver information needs and provide or refer to informa­tion and support services as necessary.

Evaluate survivors regularly to deter­mine appropriate levels of participation in health promotion and lifestyle modi­fication programs.

Routinely assess body mass index among survivors, and recommend that survivors who are overweight or obese limit their consumption of high-calorie foods and beverages.

Educate survivors on the association between physical activity and lower overall and prostate cancer-specific mortality and improved quality of life.

Because smoking after prostate cancer treatment increases the risk of cancer recurrence and second cancers, ask survivors about tobacco use, and offer or refer them to cessation coun­seling and resources as needed.

Measure PSA levels every six to twelve months for the first five years after definitive treatment, and then recheck annually.

Be aware that men who have had radiation treatment have a slightly increased risk of developing second primary cancers compared to men who underwent surgery. Adhere to routine ACS screening guidelines for the early detection of any new cancers.

Assess physical (urinary, sexual, bowel) and psychosocial effects of prostate cancer and its treatment; the focus of assessment should be tailored to the type of cancer treatment received and current disease state to trigger ap­propriate self-management and clinical management strategies for support and therapy.

Identify, treat, and routinely assess survivors for psychological distress.

♦ ♦ ♦ ♦ ♦

This article was published in Coping® with Cancer magazine, July/August 2014.

Diagnosis: CLL

Your Guide to Understanding How Chronic Lymphocytic Leukemia is Treated


Photo by Cancer Type

Chronic lymphocytic leukemia is a type of cancer in which the bone marrow makes too many lympho­cytes (a type of white blood cell). CLL, a slow-growing blood and bone marrow disease, is one of the most common types of leukemia in adults.

If you’ve been diagnosed with CLL, you’re probably wondering about your options for treating the disease. Differ­ent types of treatment are available for people with CLL. Some treatments are standard (the currently used treatments), and some are being tested in clinical trials. Certain factors affect treatment, including the stage of the disease; red blood cell, white blood cell, and plate­let blood counts; presence of symptoms such as fever, chills, or weight loss; whether the liver, spleen, or lymph nodes are larger than normal; response to initial treatment; and whether the CLL has recurred.

Currently, five types of standard treatment are used for CLL: watchful waiting, radiation therapy, chemotherapy, surgery, and targeted therapy. Here is a breakdown of these treatments, as well as some information on a couple of treatments that are being tested in clinical trials.

Five types of standard treatment are used for CLL.

Watchful waiting involves your doc­tor closely monitoring your condition without treating it until CLL symptoms appear or change. During this time, problems caused by the disease, such as infection, are treated.

Radiation therapy uses high-energy X-rays or other types of radiation to kill cancer cells or keep them from growing. There are two types of radiation therapy. External radiation therapy uses a ma­chine outside the body to send radiation toward the cancer. Internal radiation therapy uses a radioactive substance sealed in needles, seeds, wires, or catheters that are placed directly into or near the cancer.

Chemotherapy uses drugs to stop the growth of cancer cells, either by killing the cells or by stopping them from dividing. When chemotherapy is taken by mouth or injected into a vein or muscle, the drugs enter the blood­stream and can reach cancer cells throughout the body (systemic chemo­therapy). When chemotherapy is placed directly into the cerebrospinal fluid, an organ, or a body cavity such as the abdomen, the drugs mainly affect cancer cells in those areas (regional chemotherapy).

Surgery to remove the spleen (splenectomy) can relieve the discom­fort of an enlarged spleen and, for some people, increase blood cell counts. However, surgery is not in­tended to cure the disease.

Targeted therapy uses drugs or other substances to identify and attack specific cancer cells without harming normal cells. Monoclonal antibody therapy and tyrosine kinase inhibitor therapy are types of targeted therapy used in CLL treatment.

♦ Monoclonal antibody therapy uses antibodies made in the laboratory from a single type of immune system cell. These antibodies can identify substances on cancer cells or normal substances in the body that may help cancer cells grow. The antibodies attach to those substances and kill the cancer cells, block their growth, or keep them from spreading. Monoclonal antibodies are given by infusion. They may be used alone or to carry drugs, toxins, or radioactive material directly to cancer cells.

♦ Tyrosine kinase inhibitor therapy is a treatment that blocks signals needed for tumors to grow.

Clinical trials are research studies meant to help improve current treatments or obtain information on new treatments for people with cancer. When clinical trials show that a new treatment is bet­ter than the standard treatment, the new treatment may become the standard treatment. Even when clinical trials do not lead to effective new treatments, they often answer important questions and help move research forward. The following are two CLL treatments that are being studied in clinical trials.

♦ Chemotherapy with stem cell transplant is a method of giving chemo­therapy and then replacing blood-forming cells destroyed by the cancer treatment. Stem cells (immature blood cells) are removed from your blood or bone marrow, or from that of a donor, and are frozen and stored. After chemo­therapy is completed, the stored stem cells are thawed and infused into your body, where they can grow into (and restore) your blood cells.

♦ Biologic therapy (also called biotherapy or immunotherapy) uses your immune system to fight cancer. Substances made by your body or made in a laboratory are used to boost, direct, or restore your body’s natural defenses against cancer.

Follow-up tests may be needed throughout the course of your treatment. Some of the tests that were done to diagnose or stage your cancer will be repeated in order to see how well treatment is working. Decisions about whether to continue, change, or stop treatment may be based on the results of these tests. Some tests will be done from time to time after treatment has ended. The results of these tests can show if your condition has changed or if the cancer has recurred.

♦ ♦ ♦ ♦ ♦

If you’re interested in joining a clinical trial, visit cancer.gov/clinicaltrials to find one in your area.

Source: National Cancer Institute, cancer.gov

This article was published in Coping® with Cancer magazine, July/August 2014.

Still Standing with Late-Stage Lung Cancer

8 Years and Counting

by Joseph Liguori

Inspiration image

If I’ve learned anything from my battle with cancer, it’s that can­cer can find anyone; it doesn’t discriminate. But more importantly, I’ve learned that a frightening and bleak cancer diagnosis is not necessarily a death sentence.

My entire life was turned upside down when I was diagnosed with lung cancer eight years ago. I had enjoyed an active, healthy lifestyle. I didn’t smoke. I watched what I ate. It wasn’t until a physician friend of mine ex­pressed concern about my cough during a game of basketball that I had any reason to see a doctor. Everyone in my office had a cough, so I didn’t think much of it. Still, I took my friend’s advice and visited a nearby hospital to have it checked out.

I was shocked to learn that my cough wasn’t merely a symptom of a cold go­ing around my workplace. I had stage IV lung cancer that had metastasized to my chest and spine. What’s more, I was told that the cancer had spread so far that neither surgery nor chemo­therapy would help and that I should get my finances in order and go on a vacation with my family.

I decided that I would do everything I could to beat this cancer.

Instead, I decided then and there that I would do everything I could to beat this cancer. I was sure there were more options, and I was determined to find them. My local hospital had a great reputation nationwide, but it specialized in cardiovascular care, so I decided to seek out the top cancer treatment centers this country had to offer.

I believe it is because of my perse­verance in pursuing the best possible cancer care that I am still here today. I did some research, chose a cancer center, and began an aggressive treatment regimen to fight my lung cancer. In addition to the tumors in my lung, chest, and spine, the cancer had metastasized to my brain, resulting in recurrent brain tumors for which I’ve received various forms of targeted chemotherapy and brain radiation, including stereotactic radio­surgery, a treatment that delivers a high dose of targeted radiation over a short time.

While my journey with cancer will never truly be over, I am thankful that advanced options for cancer treatment are available for people like me with late-stage cancer. I still make a con­scious effort to live a healthy lifestyle, which includes eating nutritiously and exercising. I also stay up to date on the latest developments in the field of oncology and continue to work with an all-star team of doctors to manage my ongoing care. Taking these steps helps me feel more in control of my own destiny and proud knowing that I’m playing an active role in yielding my best possible chance of survival. My advice to fellow cancer survivors is this: Advocate for yourself, seek out the most advanced cancer treatments available, and most importantly, never give up hope.

♦ ♦ ♦ ♦ ♦

Joseph Liguori is a stage IV lung cancer survivor living in AZ.

This article was published in Coping® with Cancer magazine, July/August 2014.

A Clinical Trial System for the Era of Precision Cancer Medicine

A Report from the National Cancer Institute

by Jeffrey Abrams, MD

Photo by Cancer Type

The National Cancer Institute has the largest oncology clinical trials program in the world, supporting, fully or in part, 3,775 active clinical trials and enrolling more than 35,000 clinical trial participants annually. Yet, as a di­rector of NCI-supported clinical trials, I know that behind every statistic is a person, each of whom brings his or her own motivations and hopes to the table when deciding whether to participate in a clinical trial.

For instance, Pamela, who was diag­nosed with multiple myeloma, explains her decision to participate in a clinical trial this way: “This will be my chance to help give back and to help other people, maybe even my family, in the future.”

Clinical trials, which typically involve hundreds of volunteers like Pamela, are the final step in the often long, arduous process of determining whether new medications, tests, imaging techniques, and other treatment strategies are safe and effective. The U.S. Food and Drug Administration approves most cancer drugs only after a large clinical trial finds the drug to be capable of improving treatment outcomes, either by delaying tumor recurrence or prolonging survival compared to the standard treatment, assuming that the new treatment doesn’t produce serious side effects that outweigh the potential benefit of extended life.

NCI-supported clinical trials, which take place in research institutions and in communities across the country, have produced many important advances in cancer care over the past 50 years. For example, clinical trials have dem­onstrated the importance of using chemotherapy after surgery to improve survival in common cancers like colorectal and breast cancer, established new ways to manage treatment-related side effects like nausea and fatigue, and vastly improved survival for many children with cancer while reducing the short- and long-term side effects of treatment.

Many of the changes to NCI’s clinical trials pro­grams are the result of nearly a decade of work, including exhaustive reviews by several groups of outside experts and recommendations from the Institute of Medicine.

Author of Article photo

Dr. Jeffrey Abrams

However, even with a solid record of accomplishments, we know it is crit­ical that the structures we support to conduct clinical trials keep pace with the latest advances in cancer research. The pre-clinical component of new drug development – that is, the research per­formed in the laboratory on cells and in animal models, for example – has shortened, and new drugs now move from the laboratory to the clinic with much greater speed than in the past. To take advantage of this, the clinical trial infrastructure must be nimble, efficient, and capable of screening large numbers of people to find those whose tumors are best suited to the new drug being tested. That’s why we are transforming NCI’s clinical trials system in a way that ben­efits researchers, the institutions that support and conduct the trials, and most importantly, people like Pamela, who rely on clinical trials for state-of-the-art treatments that may lead to better strat­egies for treating and managing cancer.

Responding to Complexity
Advances in medical technology and our under­standing of cancer have changed the science of cancer research. To keep pace with those advances, and to accommo­date the fiscal climate in which we live, NCI is adapting its clinical trials pro­gram to ensure that we serve the needs of the people who are relying on it.

Researchers can now dive deep into the machinery of cancer cells, as well as the normal cells and tissues that sur­round tumors, allowing them to dissect the communication pathways in tumor cells and catalog the molecular changes that allow tumor cells to evade chemo­therapy, radiation, and attack by the immune system.

This evolution in our understanding of cancer means that we no longer think of cancer as a monolithic disease that behaves in a uniform fashion in every person who is diagnosed. We are increas­ingly describing and treating individuals’ diseases according to the genetic and biochemical changes that are driving it to grow and spread. We call this treat­ment approach precision medicine. It recognizes that each person’s cancer is unique, and that, as much as possible, treatment must be selected based upon the alterations seen in each tumor.

It’s our greater appreciation of the complexity of cancer, and the always present need to manage taxpayer dollars in the wisest, most judicious fashion, that necessitate the way we plan and conduct clinical trials.

Better Science, Better Results
This past March, NCI officially launched the National Clinical Trials Network (NCTN), a new clinical trials network that pro­vides an infrastructure for NCI treatment, screening, and diagnostic trials. Later this year, NCI will launch the National Community Oncology Research Program (NCORP), a community-based program that complements the treatment trials of the NCTN but also emphasizes can­cer control (trials aimed at reducing side effects from cancer or its treatment) and cancer prevention trials. NCORP will also study cancer-care delivery issues, studying how cancer care is ac­tually delivered to people in their own communities by examining the impact of economic and behavioral issues af­fecting healthcare delivery. Both NCTN and NCORP are the products of the consolidation of existing clinical trials programs. Indeed, the predecessor to the NCTN, the Clinical Trials Cooperative Group Program, had remained essentially unchanged for more than five decades.

NCTN is devoted to conducting late-stage (phase II and III) clinical trials that test new treatments and new ways of incorporating advanced imaging tech­nologies into treatment. Working in tandem with NCTN, NCORP will focus (although not exclusively) on trials that will test new ways of preventing cancer and improving the delivery of care, as well as studies that provide important information about the effectiveness of commonly used treatments.

The former nine adult Cooperative Groups (research teams, often from large academic medical centers, that work together on clinical trials) have consolidated to form four adult groups in NCTN, and, as was the case under the previous clinical trials system, an ad­ditional large group is focused solely on childhood cancers.

The NCTN launch features a num­ber of other critical changes, including

  • a new infrastructure to capture and manage the wealth of data from NCI-funded trials;
  • a standardized process for reviewing and prioritizing proposals for new clinical trials, with an emphasis on supporting trials that are likely to most benefit patient care;
  • a focus on speeding up the launch of trials and establishing a more rigorous process for ensuring that they stay on schedule and are completed as quickly as possible; and
  • a unified, centralized system that en­sures a more streamlined ethics review is possible while still insuring all the necessary safety precautions are in place for trial volunteers.

NCORP consolidated two community-based clinical research programs into a single entity. The new program ensures that people across the country, in com­munities large and small, have access to cutting-edge research and can be part of the movement toward precision med­icine. The program’s operating approach will share the principles underlying the approach used in the NCTN.

We’re already seeing what the future of clinical trials looks like with the re­cent launch of Lung-MAP, the first of several NCTN precision medicine clin­ical trials. These trials will use the latest genomic technologies to identify the molecular drivers of individuals’ cancers and test whether new agents that target tumors with these molecular abnormali­ties are superior to standard treatments.

Upholding Our Commitment
Many of the changes to NCI’s clinical trials pro­grams are the result of nearly a decade of work, including exhaustive reviews by several groups of outside experts and recommendations from the Institute of Medicine. Leading cancer researchers, experts in clinical trials, and patient advocates all played critical roles in formulating these changes.

Even with the extensive feedback and preparation that has gone into this transition, changes as substantial and important as these are never easy. We are working closely with the research community to manage the challenges, to answer the critical questions, and to ensure as smooth a transition as possible.

Throughout this process, we at NCI will make certain that the fundamental principles and values of clinical research are upheld. We remain committed to each person enrolled in a clinical trial and will ensure that they continue to have the opportunity to receive the full benefit of those trials.

The leadership at NCI is confident that this effort will succeed. The pace of scientific advances and the hundreds of thousands of people each year who depend on those advances demand nothing less.

♦ ♦ ♦ ♦ ♦

Since 1994, NCI has pro­vided an exclusive report for Coping’s July/August Celebration Issue. Dr. Jeffrey Abrams is associate director of the Cancer Therapy Evalu­ation Program and acting director of Clinical Research in NCI’s Divi­sion of Cancer Treatment and Diagnosis.

If you’re interested in participating in a clinical trial, visit ClinicalTrials.gov to find a study near you.

This article was published in Coping® with Cancer magazine, July/August 2014.

Should You Consider Genetic Counseling and Testing?

by Ellen T. Matloff, MS, CGC, and Karina L. Brierley, MS, CGC

Knowledge image

Genetic counseling and testing have become integral tools in the fight against cancer. The results can provide important informa­tion to help guide appropriate surgical decisions, treatment, surveillance, and prevention strategies for an individual and his or her entire family. Awareness and availability of cancer genetic coun­seling and testing, criteria for insurance coverage of testing, and available test­ing options have expanded rapidly in the past decade. Therefore, even cancer survivors who did not previously have the chance to undergo genetic counsel­ing and testing, or who tested negative in the past, may now be candidates for these services.

What is genetic counseling?
Genetic counseling is a communication process with a board-certified genetic counselor that involves a thorough investigation of your personal and family medical history to assess the likelihood that the cancers in your family are due to a genetic muta­tion (change in the genetic code) and help determine if you are a good candidate for genetic testing. A genetic counselor can also help deter­mine which testing options would be the most appropriate – there are numerous genes associated with cancer risk and many testing options – and if your insur­ance will likely cover the cost of testing. He or she can discuss the risks, benefits, and limitations of testing and the medi­cal options available to individuals who carry a genetic mutation. The genetic counselor will also interpret your test results, discuss your medical options based on the results, assist you in relay­ing this information to your medical team, and provide resources and support for you and your relatives.

Author of Article photo

Ellen Matloff

Who should consider genetic counseling?
Most cancers are not due to a single hereditary mutation. How­ever, there are a number of risk factors that increase the chance that cancer is hereditary:

♦ Early age of cancer onset When certain cancers are diagnosed at an early age (for example, breast, colon, or uterine cancer before age 50, or kidney cancer before age 46), it in­creases the chance that the cancer is hereditary.
♦ Multiple family members with the same cancer If several relatives on the same side of the family have all had the same type of cancer, it increases the chance that these cancers are hereditary.
♦ Clusters of cancers caused by the same genetic mutation If relatives on the same side of the family have differ­ent cancers that are known to be caused by the same genetic mutation (for example, diagnoses of breast, ovarian, and pancre­atic cancers or colon, uterine, and ovarian cancers), the chance that the cancers are hereditary is increased.
♦ Multiple primary cancers diagnosed in one person If a single person devel­ops more than one primary cancer (as opposed to one cancer that has spread to other parts of the body), particularly if those cancers fall into the clusters described above, it increases the likeli­hood that the cancers are hereditary.

Author of Article photo

Karina Brierley

♦ Ethnicity Some genetic diseases are more common in certain ethnic back­grounds. For example, hereditary breast and ovarian cancer is more common in people of Jewish ancestry.
♦ Unusual presentation There are several uncommon cancers (like male breast cancer) and findings (such as dozens of colon polyps) that are more often hereditary and warrant a referral to a genetic counselor.
♦ Pathological findings In some cases, pathology is a critical tool in genetic risk assessment. Certain subtypes of cancer are more likely to be hereditary (for example, triple-negative breast can­cers). Pathology can also determine which hereditary cancer syndrome is more likely to be the cause of a par­ticular cancer.

Why would I want this information?
Some cancer survivors wonder why they would want genetic counseling and test­ing if they have already had cancer, and some worry that it will feel like opening Pandora’s Box. However, genetic coun­seling and testing can help you to prevent a future cancer and arm your relatives with important knowledge that can help them avoid developing cancer.

Do I really need to see a genetic counselor? Can’t I just have testing through a direct-to-consumer testing company or have my doctor order it?
In order for genetic testing to be benefi­cial, the correct, validated test must be ordered through a clinical laboratory, results must be interpreted accurately, and the appropriate medical recommen­dations must be made. The genetic tests offered through direct-to-consumer companies are often classified as “enter­tainment” rather than for clinical use and may not meet these standards. Many cases of errors resulting in unnecessary surgery and advanced cancer diagnoses have been reported when testing was not accompanied by counseling through a certified genetics professional. Be­cause this testing may be critical for you and your entire family, it is essential that you work with a provider who has grad­uate training and certification in genetics.

♦ ♦ ♦ ♦ ♦

Ellen Matloff is a research scientist in Genetics and director of Cancer Genetic Counseling, and Karina Brierley is a genetic counselor, both at Yale Smilow Cancer Center at the Yale School of Medicine in New Haven, CT.

To find a genetic counselor in your area, visit the National Society of Genetic Counselors website, nsgc.org. For telephone-based genetic counsel­ing services, you can contact InformedDNA at (800) 975-4819, or visit InformedDNA.com for more information.

This article was published in Coping® with Cancer magazine, May/June 2014.

Let’s Talk about It

by Julie Larson, LCSW

Wellness image

A cancer diagnosis can impose a great deal of uncertainty into your life. As you struggle to make sense of your experience, you may find it difficult to decipher your needs and feelings, let alone communicate them to the people in your life who want to help. Facing your first day back to work, a large family gather­ing, or even a casual night out with friends can be daunting when you’re not sure how to approach conversa­tions about your cancer. Learning a few simple strategies for better communication can help keep you from feeling misunderstood, isolated, and overwhelmed.

♦ Identify your needs and feelings.
Before you can begin to com­municate your needs and feelings to others, you must first identify them for yourself. What do you need people to understand about your situation? What has helped you during difficult situa­tions in the past? Do you need someone to help you with a task, offer advice, or simply listen to what you have to say? The answers to these questions might help tailor your response when people ask what they can do to help you. If you’re still not sure, it’s OK to say, “I don’t even know what I need right now” or “I’m still working to understand everything, and it’s best if I don’t get ahead of myself.”

Let your loved ones know if you want to talk about your feelings or if you prefer to be more private.

Author of Article photo

Julie Larson

♠ Know your audience.
Once you’ve identified your needs, you can begin to pinpoint the people in your life who can help meet those needs. While some people consistently know the right things to say, others are more likely to pitch in and help in prac­tical ways. So for example, you might approach the former when you’re feel­ing overwhelmed and need someone to offer advice to help calm you down, and the latter when you’re feeling fa­tigued and need someone to help you with household chores.

♣ Help others help you.
Don’t feel shy about teaching people how to talk to you or letting them know where you want a conversation to go. In fact, your loved ones are often seek­ing this type of guidance. Let them know if you want to talk about your feelings or if you prefer to be more private. If you don’t feel like talking about cancer, tell them, “I just need to distract myself and focus on other things today.” On the other hand, if you need a little extra support, you might say, “My thoughts keep coming back to the possibility of recurrence. Normally I feel more in control, but today I am more sensitive.”

♥ Rehearse a “back pocket” response.
When you’re caught off guard with unexpected questions, inappropriate statements, or the unsolicited opinions of others, you might find yourself feeling flustered and babbling as you work to procure a response. Having a few simple, straight­forward responses prepared, rehearsed, and “in your back pocket” can help you feel more in control and confident when an unexpected comment pops up. You might say, “Thanks for checking in. I’m taking things one day at a time and finding what works best for me,” “I’ve had ups and downs, but I have a great medical team, and my family has been a wonderful support,” or even “I appre­ciate your concern, but let’s talk about something else today. I can’t focus on cancer all the time. How are you?” These responses can shift the focus of the con­versation, correct a person’s assumptions about what you’re going through, and perhaps even calm their worries about your situation.

♦ Remember that communication encompasses more than words.
Body language is a powerful tool that allows us to communicate without using any words at all. A simple touch or a glance across a dinner table can speak for you when words are hard to find. You can also use body language to appear more confident; for example, by sitting up straight and maintaining eye contact with the person you’re talk­ing to. This can be helpful when you need to assert yourself despite under­lying feelings of uncertainty. Moreover, when you appear more confident, you may even end up feeling more confi­dent too. Communication is an integral part of the cancer experience. From the vital conversations you have with your med­ical team regarding treatment planning to the intimate expressions of emotion and hope you share with loved ones, these moments help shape your cancer experience. Learning how to communi­cate your needs and feelings takes time. But each conversation you have pro­vides vital feedback to help you improve your communication skills for future conversations.

♦ ♦ ♦ ♦ ♦

Julie Larson is a psychotherapist in New York, NY. In her practice, she works primar­ily with people under the age of 40 on issues surrounding wellness, loss, and life transi­tions. She speaks often to both survivor and professional audiences on the impact of a serious illness at a young age.

This article was published in Coping® with Cancer magazine, May/June 2014.

Managing Nutrition-Related Side Effects of Cancer Treatment

Tips You Can Chew On

by Carly Roop, RD, LDN, CSO

Wellness image

Many studies have found that good nutrition plays a role in improved cancer survival. How­ever, treatment-related side effects, if left unmanaged, can complicate things. Side effects can compromise a person’s ability to get the nutrition they need and stay on course with their treatment. As a nutrition counselor, my job is to help you prevent and manage side ef­fects that interfere with good nutrition during treatment.

Nausea and Vomiting
Managing nausea caused by radiation or chemo­therapy requires a proactive approach. Some chemotherapy drugs are more likely to cause nausea and vomiting than others are. Moreover, your propensity for nausea may play a role in the extent of nausea and vomiting you experience. If you are prone to nausea, the use of prescription anti-emetics may be neces­sary to manage this side effect.

Smaller food portions are often easier to handle when you’re feeling queasy, and snacking throughout the day on dry cereal, pretzels, or other bland foods, like a baked potato, may help to dissipate nausea. Consuming ginger and ginger-infused products has been shown to provide relief as well. It’s important to stay well hydrated during treatment, so drinking water is always encouraged, but you may be able to better tolerate broth, lemonade, or ginger ale when you’re nauseated.

Smaller portions are often easier to handle when you’re feeling queasy.

Author of Article photo

Carly Roop

Sometimes even the smell of food can trigger nausea. Keep a window open while cooking or baking, and wait for foods to cool down before eating them. You might want to consider sticking to cold foods, as they have less of an aroma. Nevertheless, even chilled liquid meal replacement drinks or shakes may be better tolerated when their scent is concealed in a travel mug.

Heartburn
Chemotherapy and radiation can sometimes cause you to experience heartburn, especially after overindulging or eating spicy foods. Heartburn may also result from consti­pation, another common side effect of cancer treatment. If you’re experiencing treatment-related heartburn, ask your doctor if you would benefit from taking a proton-pump inhibitor, a medicine that reduces the amount of stomach acid made by glands in the stomach lining. You also should limit your intake of caffeinated beverages and greasy, spicy, or acidic foods, such as tomatoes and citrus fruits, and you’ll want to avoid peppermint as it may increase heart­burn as well.

Constipation
Managing constipation can be as simple as eating high-fiber foods, drinking more fluids, and engag­ing in some physical activity. Many people find that adding flax meal to smoothies or oatmeal is a successful way to manage constipation. Some old-fashioned remedies, such as drinking hot water with lemon or eating stewed prunes, also can do the trick. However, if you’re taking opioids to control pain, you may need to talk with your doctor about taking stool softeners or laxatives to help with constipation as a side effect of those medications.

Diarrhea
On the other hand, if you’re experiencing loose stools during treat­ment, try incorporating foods that contain stool-bulking soluble fiber, such as bananas, applesauce, white rice, and white toast, into your diet. Smooth nut butters, white pasta, tapioca, and, surprisingly, marshmallows can help by slowing down digestion. Drinking sports drinks containing electrolytes is also recommended. If you’re undergoing radiation to the lower abdomen or pelvis, or if you’re on certain chemotherapy drugs, it may be necessary to take anti-diarrheal medication and follow a low-fiber diet.

Oral Complications
Sore mouth and taste changes can make eating difficult during treatment. It may be wise to avoid crunchy, salty, and acidic foods if you have mouth sores. It may also be help­ful to drink through a straw.

If you’re struggling with taste aver­sions, this is a good time to experiment with dips, condiments, and different herbs and spices to enhance your food’s flavor. If you enjoy only the first few bites of a food, try fixing yourself a meal with small portions of a few different foods so you aren’t overwhelmed but won’t get bored while eating either. Rins­ing your mouth with saltwater or baking soda solutions can help rid your mouth of bad tastes and heal mouth sores.

As you go through treatment, con­sider keeping a journal to track any side effects you experience. Then, work closely with your doctor and a regis­tered dietitian (if one is available at your cancer center) to ensure that your side effects are well managed and you’re getting the nutrition you need.

♦ ♦ ♦ ♦ ♦

Carly Roop is a certified specialist in oncol­ogy nutrition at Abramson Cancer Center at Pennsylvania Hospital in Philadelphia, PA.

To find a certified oncology nutrition specialist in your area, visit OncologyNutrition.org.

This article was published in Coping® with Cancer magazine, May/June 2014.

The Bald Blessing

by Nicole Malato

Inspiration image

The other morning I looked into the mirror, just as I do every day. The woman with no wig on her head and no makeup on her face had a very different appearance from the dolled-up version who prefers to shield those around her from what cancer really looks like. This is the real me, a private reality that often brings sadness to my heart as I examine my reflection.

However, this particular morning was different. I saw that same bald woman sans makeup, but rather than thinking how pathetic, the world blessed came to mind. I realized that I have received so many blessings through my cancer journey.

Simply being in treatment is a bless­ing. I know that may sound odd. Trust me, nothing would be more pleasing than to hear my doctor say that all is well and I don’t need treatment any­more. But in the meantime, I am more than OK with having to go for treatment because it means there are things my doctors can do to manage my disease. No matter how unpleasant those things may be, knowing that my cancer can be treated is a blessing.

Knowing that my cancer can be treated is a blessing.

With this realization, I stopped feel­ing sorry for myself. Instead, I now feel proud and blessed to have options available to me. I am bald because my cancer is being treated, and that’s a good thing. To be honest, wearing a wig takes the extra stress of styling my hair out of my morning routine anyway. Plus I don’t have to worry about taming the humidity-induced frizz I battled for the previous 34 years.

My advice for you is this: Don’t fret over treatment. Treatment begets hope, and hope is what carries us forward each day, giving us dreams to live for and reasons to fight. I am here because my cancer can be treated. I may be bald, but I am blessed.

♦ ♦ ♦ ♦ ♦

Nicole Malato is a breast cancer survivor and mother living in Toms River, NJ.

This article was published in Coping® with Cancer magazine, May/June 2014.

Women, Cancer, & Sexual Health

by Yung A. Park, MD, and Elena Ratner, MD

Wellness image

Sexual dysfunction is a common side effect of cancer and its treat­ment, but this doesn’t mean you have to accept it as part of your “new normal.” You can reclaim your sexuality. Many women are even able to get back to the level of sexual functioning and intimacy they enjoyed before cancer.

First, it’s important to understand how cancer affects sexual health. Cancer treatments can temporarily or perma­nently alter the nerves, blood vessels, and sex hormone levels that control nor­mal sexual function. In female cancer survivors, this sex hormone is estrogen. Low estrogen levels can significantly affect a woman’s quality of life in a number of ways.

Hot flashes are a common issue caused by low estrogen levels. They can be severe enough to impair your quality of sleep, which can affect your sexual health. Steps you can take to control hot flashes include eating a healthy diet, losing excess weight, limiting your caffeine intake, and avoiding alcohol, spicy foods, and MSG (monosodium glutamate). Wearing clothing made of natural rather than synthetic fibers, and wearing loose, thin layers rather than thick, tight-fitting clothing, can help as well. If hot flashes are affecting your quality of sleep, try lowering your bed­room temperature at night by keeping a window open or using a fan. Both hormonal and non-hormonal medica­tions are available for relieving hot flashes, but you will need to talk with your doctor to determine which options might work best for you.

By keeping an ongoing open and honest dialogue about your feelings, fears, and concerns with your partner, you can begin to overcome the barriers to sexual intimacy.

About Coping

Dr. Yung Park

Vaginal dryness is another sexual health issue caused by low estrogen levels. Vaginal dryness can result in painful intercourse as well as frequent urinary tract infections. While over-the-counter lubricants can be effective for many women, they may not work as well for some. For the latter group, your doctor may recommend medications to help counteract vaginal dryness.

Low sex drive, or libido, can also be caused by low estrogen levels; however, it can be psychologically based as well, brought on by depression, anxiety, body image issues, or feelings of shame, guilt, or anger. After cancer treatment, fear of recurrence also may be a contributing factor to your low sex drive. A mental health provider who specializes in psycho-oncology can help you get to the bottom of what’s causing your decreased libido and can teach you techniques you can use to improve sexual functioning.

Author of Article photo

Dr. Elena Ratner

Intimacy problems may also arise during cancer. You may avoid being intimate with your partner if physical changes have negatively affected your body image. Likewise, your partner may feel wary of initiating sexual activity due to fear of causing you discomfort or pain. If you’re single, you may refrain from dating because of low self-esteem or the fear that you would be rejected because you have cancer. By keeping an ongoing open and honest dialogue about your feelings, fears, and concerns with your partner, or by seeking professional help from a sex therapist or a psychol­ogist who specializes in individual or couples therapy, you can begin to overcome these emotional barriers to sexual intimacy.

A growing number of cancer centers across the nation have opened sexual health centers, as healthcare providers are recognizing that sexual health is a significant area of concern for many cancer survivors. However, if a sex­ual health center is not available in your area, ask your doctor to refer you to a specialist who can help. In the mean­time, you can make some simple lifestyle changes to lessen the emotional impact of sexual issues on your life. Regular exercise can help reduce anxiety and depression and boost self-esteem, and relaxation skills, meditation, and yoga have been shown to help relieve pain and reduce stress.

♦ ♦ ♦ ♦ ♦

Dr. Yung Park is a doctor of internal medi­cine and psychiatry who is currently a fellow of Psychosomatic Medicine at the Yale School of Medicine in New Haven, CT. Her main interest is in hormones, cancer, and women’s health. Dr. Elena Ratner is an assistant professor of Obstetrics, Gynecology, and Reproductive Sciences at the Yale School of Medicine. She works with Dr. Park at the Sexuality, Intimacy, and Menopause Clinic at the Yale Cancer Center.

This article was published in Coping® with Cancer magazine, May/June 2014.

Star Soprano and Hodgkin Lymphoma Survivor Bárbara Padilla

A Voice for Hope

by Jessica Webb Errickson

Celebrity Cancer Survivor

Bárbara spends quality time with her husband, Kyle, and their daughter, Elizabeth.

Classical crossover soprano Bárbara Padilla has a voice that demands to be heard. In 2009, the powerhouse vocalist from Guadalajara, Mexico, took the stage to audition for a spot on NBC’s America’s Got Talent. Standing in front of a celebrity panel of judges, Bárbara belted an awe-inspiring rendition of “O Mio Babbino Caro” that earned her a standing ovation and a ticket to the next round of the competition. The singer’s vocal performances continued to impress week after week, leading up to the show’s finale, where she snagged first runner up.

While she didn’t win the competition, Bárbara won the hearts of the judges and fans alike. But it wasn’t just her singing that left an impression. During her audition, Bárbara revealed that as a cancer survivor, she has experienced miracles.

Bárbara’s story of survival begins in 1996 when, while studying music at the University of Guadalajara, she started feeling uncharacter­istically run down. She also noticed a couple of unusual lumps in her neck. She wasn’t too con­cerned, but decided to have a doctor check her out anyway. “The lumps were hard, and they didn’t hurt,” Bárbara tells Coping magazine. “I just thought they were muscles that were developing from singing.”

Instead, the lumps turned out to be a symp­tom of stage IV Hodgkin lymphoma. “I don’t think I understood what was going on when they told me that I had cancer,” Bárbara admits. “I was more in shock than anything else. I just knew that my life wasn’t in my hands at all.” Clinging to her faith in God, the spiritual songstress began an aggressive course of treatment.

"I wanted to keep singing, and I wanted to tell my story."

She also continued to pursue her childhood dream of singing professionally. After graduat­ing college, she took a position as section leader and soloist of the State Choir of Jalisco. How­ever, despite having endured several rounds of vein-scorching chemotherapy, Bárbara’s cancer was unrelenting. Her choir director and mentor, Harlan Snow, insisted on flying her to Houston for a consultation with doctors at the University of Texas MD Anderson Cancer Center.

Upon landing in Houston, Bárbara got more than she bargained for when her caretaker for the trip put in a call to Peter Jacoby, the music director of the University of Houston’s Edythe Bates Old Moores Opera Center, urging him to hear Bárbara sing.

“If you talked to him today,” Bárbara explains, “he would tell you, ‘I don’t know why I said yes. I answered the phone and this lady I’d never heard of tells me I need to hear this young woman sing, and I said yes.’” He wasn’t even supposed to be in the office that day. Bárbara is convinced it was divine intervention.

Peter was so blown away by Bárbara’s audition that he offered her a scholarship to the Moores School of Music on the spot. “It was just too much,” Bárbara enthuses. “I was offered a full scholarship to a major university based on my voice. I just needed my treatment to be done.”

This gave Bárbara a new reason to fight. But in a cruel twist of fate, her doctors back home informed her that the radiation treatments she now needed to save her life would likely damage her vocal chords so severely that she would never sing again. Know­ing that in order to sing she first had to live, Bárbara decided it was worth the risk.

Miraculously, “I didn’t lose my voice at all,” Bárbara says. “I had second degree burns around my neck and my head, but my vocal chords were never affected.”

With her radiation treatments finished and her voice salvaged, Bárbara headed back to Texas. But it wasn’t long after she had settled into her Uni­versity of Houston dorm room that she learned her cancer had returned. A risky bone marrow transplant was her only remaining option.

“That was the first time I felt com­pletely defeated,” Bárbara concedes. But her friends and family rallied around her, and with a strengthened resolve, she returned to Guadalajara, ready to do whatever she needed to do to survive. Though her doctors feared the transplant would be unsuccessful, as chemotherapy had severely weak­ened her bone marrow, Bárbara once again defied the odds. Not only was the procedure a success, but she re­covered so quickly that she was on her way back to the Moores School of Music just a short month later. This time, the cancer was behind her for good.

Bárbara graduated from the Uni­versity of Houston in 2004 with a master’s degree in vocal performance, but she decided to take a break from singing to stay home with her daugh­ter. However, it wasn’t long before the voice she fought so hard to save was begging to be heard. “I wanted to keep singing,” Bárbara explains, “and I wanted to tell my story.” So when she learned that America’s Got Talent was holding auditions nearby, she hopped in line. And the rest is history.

With cancer in the rearview, Bárbara’s musical dreams are com­ing true, starting with the May 2014 release of her self-titled debut album. Through years of treatment and mul­tiple relapses, she knows that a little bit of faith can go a long way. “My perspective was very different at the end of the whole fight than at the beginning,” Bárbara says, reflecting on her five-year cancer journey. “But it was my faith in God – his love, his strength – that helped me through.”

What’s more, Bárbara reminds us that no matter how bad things look, there is hope. As she explained to the judges during her America’s Got Talent audition, “When you have hope, you keep going.”

♦ ♦ ♦ ♦ ♦

Keep up with Bárbara at BarbaraPadilla.com, twitter.com/BarbaraPadiva, facebook.com/BarbaraPadiva, and youtube.com/BarbaraPadiva.

This article was published in Coping® with Cancer magazine, May/June 2014.

Protect Yourself from Infection

by Kimberly Hinckley, RN, BSN, CIC, and Brahm H. Segal, MD

Knowledge image

Infections are illnesses caused by microorganisms (germs) such as bacteria, viruses, and fungi. People with cancer may be at increased risk for infections for a number of reasons.

The cancer itself may compromise the immune system, which is what protects the body from infection. For example, certain cancers of the blood may inhibit the body’s ability to make normal white blood cells that fight in­fection. In addition, cancer treatments such as chemotherapy and radiation therapy can decrease the number of healthy white blood cells.

Neutrophils are a specific type of white blood cell that have a particularly important role in protecting the body from infection. Neutropenia, or low neu­trophil count, can result from certain types of cancer treatment, and the longer the duration of neutropenia, the greater the risk of infection. Other medicines used in cancer therapy (such as steroids) can also weaken the immune system.

It’s important for people receiving cancer treatment to be alert for signs of infection and report them to their phy­sician. Signs of infection include fever, cough, and skin that is red, tender, and swollen.

Hand washing is one of the best methods for preventing infections.

Author of Article photo

Kimberly Hinckley

Different types of medications are used to treat infections. The most com­mon are antibiotics to treat bacterial infections. Antiviral and antifungal medi­cations are also sometimes used to treat infections in people with cancer. Some people who are at high risk for infections may be prescribed medications to reduce the risk of infection. People with neutropenia who develop a fever re­quire prompt evaluation and treatment.

Keep in mind that there are many kinds of cancer and cancer treatments with different levels of infection risk. Your oncologist can educate you about the risk of infections associated with your specific cancer and treatment and what can be done to prevent them. However, there are also some general guidelines you can follow to reduce your risk of infection.

Author of Article photo

Dr. Brahm Segal

Taking infection prevention into your own hands has a very literal translation. Hand washing is one of the best methods for preventing infections. If your hands are visibly dirty, you should vigorously wash them with soap and water for at least 15 seconds. It’s OK to use alcohol-based hand sanitizers when soap and water is not available. Always wash or sanitize your hands before eating, drink­ing, or taking medication; after using the bathroom, coughing, sneezing, or blowing your nose; before touching your eyes, nose, or mouth; before and after performing any care involving in­travenous lines, catheters, or bandages; and after touching things that are fre­quently touched by others. It is also important for your healthcare providers, family, friends, and caregivers to wash or sanitize their hands before touching you.

Your skin is your first line of defense in preventing in­fections from entering your body, so it’s important to maintain good personal hygiene. The first step to ensuring good hygiene is to bathe or shower regularly with mild soap. Change towels daily, and do not share towels with others. Regu­larly inspect your skin closely for rashes, redness, signs of infection, or cuts that do not heal properly. Use a soft toothbrush to clean your teeth after meals and before going to bed. Keep bandages dry. If they become wet, change them promptly.

In addition, you should keep away from people who are sick and avoid crowds of people, especially during cold and flu season. Do not handle animal excrement; have someone else help care for your pet. Get plenty of rest, as fatigue can stress your immune system. Eat a well-balanced diet. Do not eat spoiled or expired foods, and do not consume raw meat or seafood. Thoroughly wash fruits and vegetables before eating them.

Ask your doctor about vaccines that prevent illness. It’s important to talk to your doctor before receiving any vac­cines because live vaccines can potentially be harmful to people with certain types of cancer. Encourage family, friends, and caregivers to be immunized as well.

Empowering yourself is one of the most important things you can do to pre­vent infections during cancer treatment. You have the right to ask every­one who participates in your care to wash their hands. Make sure that anyone who visits you is healthy, and don’t be afraid to ask questions when you’re unsure. Contact your healthcare team if you suspect you may have an infection. Infections caught early are easier to treat.

♦ ♦ ♦ ♦ ♦

Kimberly Hinckley is a senior infection prevention and control coordinator, and Dr. Brahm Segal is chief of Infectious Disease, both at Roswell Park Cancer Institute in Buffalo, NY.

To learn more about preventing infections during cancer treatment, visit PreventCancerInfections.org.

This article was published in Coping® with Cancer magazine, May/June 2014.

When Survival Isn’t Enough

The Role of Rehabilitation in Cancer Care

by Samman Shahpar, MD

Wellness image

Whether you have been newly diagnosed with cancer or have completed treatment, the recovery process is about achiev­ing your highest potential, which not only includes survival but also main­taining function.

Cancer and the various treatments used to control or cure the disease often leave survivors feeling not quite the same as they did before. Some of the side effects that survivors may experience include fatigue, pain, weakness, and difficulty thinking clearly. These side effects can impair a survivor’s ability to achieve their highest potential. As a physiatrist (or rehabilitation physician) specializing in the field of cancer rehabilitation, my focus is on helping survivors work through these impair­ments and tap into their potential. Sounds great, right? But what does this mean for you?

The side effects cancer survivors experience not only can make daily functioning difficult but also can lead to inactivity and deconditioning. Many people, including doctors, underestimate the effects that inactivity can have on our body and health.

As your activity level increases, a cancer rehabilitation specialist can help you establish a comprehensive exercise program.

Author of Article photo

Dr. Samman Shahpar
(© Chris Guillen Photography)

Inactivity leads to deconditioning, which is a decline in function of our body’s organ systems. Studies have shown that deconditioning can cause muscles to lose one to three percent of their strength per day, the heart rate to increase up to 10 beats per minute, and the body to have a decreased pain toler­ance. These are just a few examples of the widespread changes inactivity can cause. Amazingly, this decline can occur even if you don’t have any medical issues.

The good news is that we do have a way to prevent and treat deconditioning. It’s called exercise. What is even more exciting is that newer research shows that exercise is so powerful it can help our bodies fight cancer and live longer. No matter what stage a survivor is at in his or her cancer care, there is one universally beneficial piece of advice I always share – make exercise a part of your life.

The good news is that we do have a way to prevent and treat deconditioning. It’s called exercise. What is even more exciting is that newer research shows that exercise is so powerful it can help our bodies fight cancer and live longer. No matter what stage a survivor is at in his or her cancer care, there is one universally beneficial piece of advice I always share – make exercise a part of your life.

For some people, initiating an exer­cise program can be a daunting task. A cancer rehabilitation specialist can help guide you, but the most difficult part is usually just making the decision to integrate exercise into your life. Once you’ve made a commitment to exercise, the first step is to measure your current activity level.

There are many fancy gadgets that can help, but a simple pedometer, which counts the number of steps you take, can get the job done. It’s important to use an objective measurement since we tend to overestimate how active we really are. With accurate information, you can then work together with a can­cer rehabilitation specialist to develop an individualized program to reach your goals.

As your activity level increases, a can­cer rehabilitation specialist can help you establish a comprehensive exercise program. An ideal program should include three components – aerobic activity, strengthening exercises, and stretching. These components can be integrated into many different activities, such as yoga, golf, and tai chi. The best approach is to find activities that are safe and enjoyable for you.

There are many things in life that we cannot control. However, you can have a strong in­fluence over your own body, and exercise is one of your most potent weapons. Cancer rehabilitation specialists strive to give every survivor the tools and guidance they need to obtain that sense of em­powerment and achieve their goals. You can do more than survive; you can thrive.

♦ ♦ ♦ ♦ ♦

Dr. Samman Shahpar is an attending physi­cian in the Cancer Rehabilitation Program at the Rehabilitation Institute of Chicago, a member of the Robert H. Lurie Compre­hensive Cancer Center of Northwestern University, and a clinical instructor at North­western University’s Feinberg School of Medicine in Chicago, IL.

This article was published in Coping® with Cancer magazine, May/June 2014.

Cancer Has Shown Me That …

by Belinda Foreman

Inspiration image

I love my children, but it is so difficult to let them see me this way.

It’s important always to tell the people around me how much I love them.

God does exist, and God is good.

Healing takes patience, and even though I don’t have a lot, if I wait, it will happen.

I shouldn’t judge others, because I don’t know what they’re going through.

Telling people and acknowledging that I have cancer is OK.

True friends will stay with me through anything, even when I’m bald and eyelash- and eyebrow-challenged.

It’s OK to cry as much as it takes to get me through it.

I am stronger than I think I am.

God works in amazing ways. He is always with me and can heal me.

The people I least expect will do the most amazing things in my honor.

People will hear me when I ask for help.

All that mind, body, and spirit stuff I love so much really does work.

I can gain 20 pounds while going through chemotherapy.

Yes, gray is my natural hair color after all these years.

When I’m tired, it’s OK to lie down and rest.

Taking care of myself, being still, and acknowledging my true feelings are not signs of weakness or selfishness.

I am worthy of good things and lots of love.

The fourth day after chemo will be rotten, and I will feel like I can’t do it anymore. But on day five, it will get better.

Anyone who goes through cancer treatment is a hero.

This experience has changed my life forever.

My family will always be there for me.

Doctors, nurses, technicians, and medical assistants are amazing people who can make my day better, even when things seem really bad.

Good, caring, and thoughtful strangers do exist in the world.

Laughing out loud, even when I’m by myself, can be the best.

All of this happened for a reason.

I can go on, move forward, and know that my prayers have been heard.

♦ ♦ ♦ ♦ ♦

Belinda Foreman is a breast cancer survivor living in Rock Hill, SC.

This article was published in Coping® with Cancer magazine, May/June 2014.

An Ending or a New Beginning

The Choice Is Yours

by Steve Ward

Author of Article photo

Steve Ward

Whenever you face a challenge, you have a choice to make. Will you choose to view the challenge as an ending or as a new beginning?

Take a cancer diagnosis, for example. You could wallow in your anger, pain, fear, anxiety, and deep sadness, sur­rendering yourself to all the negative emotions associated with your cancer journey. You could choose to view the challenge as an ending, with nowhere good to go after that. But before you make that choice, ask yourself, “Would I like to live with negativity?” I doubt that the answer would be yes, but you’d be surprised at how many people pas­sively choose to live with negativity even if they say they don’t want to. If you buy into the idea that the challenge is an ending to mourn, you invite negative emotions into your heart.

On the other hand, you could work through the negativity and choose to view the bad situation as a new begin­ning, a chance for you to change your life in new and exciting ways you scarcely imagined were possible. Viewing a challenge as a new beginning that will lead to a positive outcome will play a vital role in your path to serenity.

Viewing a challenge as a new beginning that will lead to a positive outcome will play a vital role in your path to serenity.

At the onset of your challenge, see­ing your situation as an ending is normal. We all tend to do it. It’s easy to assume that the bad will continue, that you’ve reached the end of the road, and that’s it. Even when you decide to shift your point of view to that of seeing this chal­lenge as a new beginning instead of an ending, you’ll likely waver back and forth between the two viewpoints. The idea, though, is to work hard to change your perspective while focusing on the positives in your life. As you begin the process of finding your positives, also make a concerted effort to view the situation you’re in as a new beginning. You’ll find that this is an extremely powerful anti-negativity weapon.

As your belief in the idea that you are bound for new horizons takes hold, you will feel passionate, inspired, focused, and excited. Don’t be afraid to share this passion and your story with others. Mov­ing out of your shell to give back to others as you recover will help not just you but also those with whom you share your story. They will see that they, too, can rise above their own challenges, and you will feed the fire of positive energy you sparked when you first decided to actively pursue the positives in your life. Giving thanks for the good you have in your life and then giving to others will propel you further along the road to healing and recovery.

♦ ♦ ♦ ♦ ♦

This article is adapted from Finding Your Positives: Your Personal Self-Help Plan for Overcoming Life’s Toughest Challenges by prostate cancer survivor Steve Ward. Learn more about Steve and his book at Finding-Your-Positives.com.

This article was published in Coping® with Cancer magazine, May/June 2014.

Star Stuff

by Yvonne Watterson

Inspiration image

Remembering the first time I saw it, nebulous and bright white on a screen in my doctor’s darkened office, the cancer makes me think of Carl Sagan’s “star stuff” quote. It re­quires magical thinking to accept the notion that human beings are descen­dants of a supernova that exploded long before we were born, that there is ancient stardust in each of us.

If you have just been diagnosed with cancer, you may be wondering if the magic in your life will ever return. I’m here to tell you that it will. Though it will take time, you will rediscover that you’re a star. But you may need some help along the way, as I did.

Patience Is a Virtue
I’m not a patient woman. I like to fix the problem and move on. Quickly. If you’re like me, try not to rush into making deci­sions until you understand the choices before you. Take the time to ask ques­tions, take notes, and get second, third, or even fourth opinions if necessary. As overwhelming as it is, the more you know, the better you can navigate through unfamiliar territory.

“The nitrogen in our DNA, the calcium in our teeth, the iron in our blood, the carbon in our apple pies were made in the interiors of collapsing stars. We are made of star stuff.” - Carl Sagan

Get By with a Little Help
When people offer to help, tell them exactly what you need. Stooped and bedraggled following a mastectomy and DIEP flap reconstruction, I needed quiet and rest. I asked my best friend to be my gate­keeper. She posted on my Facebook, fielded phone calls, and kept visitors away until I was ready. It was exactly what I needed from her.

Don’t Go It Alone
Take someone with you to your appointments. It’s likely that you’ll forget everything your doctor says after “You have can­cer.” You need someone there to be your ears, to write down the important details. I wish I had taken this advice, and I’m sure my doctor would have appreciated it, given the number of times she had to remind me that yes, in fact, she had mentioned the possi­bility of radiation.

Express Yourself
After I was diag­nosed, I opened a WordPress blog account and began typing. I didn’t hit “publish” at first. Instead, I just saved my drafts, the same way I once locked up my teenage angst in a secret diary. Like breast cancer, the blogosphere was a foreign place. But once I got comfortable with it, blogging allowed me to express myself, pro­viding me clarity and transparency. Simultane­ously apart from and a part of this new world, I could be both alone and connected, followed and follower, reader and writer. My fellow blog­gers have lifted me up more times than I can count. We share stories, advice, unparalleled joy, un­speakable grief, and everything in between. Blogging has become my way of expressing myself. Find yours.

Learn the Language
Through a strange sisterhood, breast cancer survi­vors develop an instantaneous intimacy that allows us to talk with strangers about our vulnerabilities, about being poked and staged and prayed for. But it’s kind of like moving to a foreign country. You have to learn the language and the norms for chatting with fellow breast cancer survivors. At first, this may make you uncomfortable, but not as uncomfortable as remaining an outsider.

You’re Not the Cause
With my cancer diagnosis came a flood of questions: Did I get cancer because I used my cellphone while driving? Because I delivered a baby at an “advanced maternal age”? Because I hadn’t been able to breastfeed or been diligent about buying certified-organic produce? Did it have something to do with the full-bodied Zinfandel I would often enjoy at the end of a day? All these questions had me believing I caused my cancer. More than a year later, I know I didn’t. And you didn’t cause yours either.

Embrace the Unexpected Benefits
While I don’t consider cancer to be a gift, it can bring with it unexpected benefits. You may be inspired to do the things you always wanted to do but never had time for. I took a college photography class. I said no to people who had never heard that word from me before. I rediscovered and recon­nected with the things that nourish my soul – my love of books, writing, Van Morrison, and good conversation. In the end, it really is all about me. And you. We’re made of star stuff.

♦ ♦ ♦ ♦ ♦

Yvonne Watterson is an invasive breast cancer survivor living in Phoenix, AZ. She blogs at TimeToConsiderTheLilies.com.

This article was published in Coping® with Cancer magazine, May/June 2014.

How Cancer Affects Your Skin

Questions and Answers on Treatment-Related Skin Complications

by Mario E. Lacouture, MD

Author of Article photo

Dr. Mario Lacouture
(© Robert A. Lisak)

Q: I am starting chemotherapy soon. I know my skin is dry, but it doesn’t really affect me. So why should I bother with moisturizers?
A: Dry skin isn’t just a matter of ap­pearance. In fact, it’s important to keep skin well moisturized as part of overall health. That’s because dryness may prog­ress to itching and scratching, which can lead to infections as well as a greater loss of water from the body. Most anti-cancer treatments will make skin drier, so it is important to prevent potential complications by keeping skin well moisturized.

Q: Is there anything that puts me at higher risk for severe skin irritation (dermatitis) during radiation?
A: Some factors can lead to more severe reactions: not washing the radiated area with soap and water; weight and large breasts; smoking; older age; infection of a surgical wound in the area; the use of chemotherapy at the same time; and underlying diseases such as diabetes or heart conditions. Cancers of the head and neck, rectum and anus, genitals, or breast are more often associated with radiation-induced skin problems than other types of cancer.

Q: I was told that itching during treat­ment could indicate an allergy to my anti-cancer medicine. Does this mean I will have to stop my treatment?
A: Itching is just one of many signs that indicate an allergy. In addition to itch, an allergy may cause a rash, shortness of breath, fever, severe coughing, low blood pressure, sneezing, diarrhea, swelling (of the face, lips, or mouth), abdominal pain, or even loss of consciousness. Many anti-cancer medications can cause itching, but that doesn’t necessarily indicate that you’re allergic to the treat­ment. In fact, true allergies are rare with cancer medicines. If the itch is caused by a medicine, there are treatments against the itch that can be used so you don’t have to stop taking your anti-cancer medicine.

Q: I had itching that was probably related to chemotherapy, but it’s gone now, thanks to the antihistamine my doctor prescribed. I don’t want to take medicines if I don’t have to, so do I still need to take this pill?
A: Since itch is a symptom, rather than a disease, it does not require continued treatment if it is no longer present. Once the itch goes away, you can stop taking or applying anti-itch medicines. Just use them as needed. However, if there is a rash associated with the itch, it’s important to treat the rash also. If your doctor is recommending antihistamines to prevent allergies to a chemotherapy medication, you should continue to use them as indicated.

Q: I take an anti-cancer medication daily in pill form, and it makes me sensitive to the sun. I went out for a walk, and now I have a painful, itchy sunburn, with some blisters. What should I do?
A: With certain medications, sunburns can develop after just a few minutes of sun exposure, even if you’re in the shade. If this happens, it’s important not to stop your treatment but to inform your doctor or dermatologist. In the meantime, take a cool shower or bath, and then apply a topical corticosteroid (ideally prescription strength, otherwise use an over-the-counter hydrocortisone cream). Take an anti-inflammatory (such as ibuprofen) and an anti-itch medicine (such as diphenhydramine), unless your doctor advises against using them. Drink plenty of fluids, and don’t break or pick any blisters or scratch your skin.

Q: My doctor said that a rash from targeted therapy means the medicine is working. She prescribed a cortico­steroid cream and an antibiotic, which have made it better. I’m happy that the rash has improved, but does this mean my targeted therapy isn’t working anymore?
A: With some targeted therapies, devel­opment of a rash means the medication is having a greater anti-cancer effect. However, people who don’t develop a rash can still benefit from these medi­cines. And for those who do develop a rash, treating it will not reduce the bene- ficial effect of the targeted treatment. In fact, managing the rash prevents discom­fort and reduces the chance of having to change or stop your targeted therapy.

Q: Is it safe to use makeup during chemotherapy, or will it make any treatment-related rash or acne get worse?
A: I encourage people to use concealing cosmetics, including foundation or pow­ders, to cover acne, rashes, or blemishes caused by anti-cancer medicines. Acne or rashes caused by these medicines will not be affected by cosmetics. However, when you use a new product or suspect a cosmetic is causing a skin reaction, apply the makeup on a small area behind the ear and leave it on overnight to make sure it doesn’t trigger acne or rash.

♦ ♦ ♦ ♦ ♦

Dr. Mario Lacouture is a board-certified dermatologist with a special interest in dermatologic conditions that result from cancer treatments at Memorial Sloan- Kettering Cancer Center in New York, NY. This article is adapted from his book Dr. Lacouture’s Skin Care Guide for People Living with Cancer.

This article was published in Coping® with Cancer magazine, May/June 2014.

Send Your National Cancer Survivors Day® Photos by June 9


Inspiration image

Did you celebrate National Cancer Survivors Day® on Sunday, June 1? We want to see your photos! You could have one of your photos chosen for the cover of Coping® with Cancer magazine’s July/August 2014 Celebration Issue. We’re planning a section to showcase the wide variety of ways people have celebrated life on this special day. Send us your most interesting shots to share with other survivors in our special issue. Deadline is Monday, June 9, to be considered for Coping’s exclusive coverage of National Cancer Survivors Day.

What to Send
♦ Format: Close up, candid shots are preferred. Front cover candidates should have a vertical format and space left at the top for the Coping logo. Inside coverage candidates can be vertical or horizontal.
♦ Photo Description: Provide a short description of each photo submitted; list people from left to right.
♦ Digital Camera: Set your camera for the highest possible resolution (quality). Submit via email; or for very large files, submit via FTP or on disk.
♦ Film Camera: Coping no longer accepts prints. Only digital photos will be considered. Most photo printing services will be able to provide you with a CD of photos taken with a film camera.
♦ Event Information: Please provide the name of the event host (sponsor), event name, location (treatment center, park, etc.), city, and state. Also provide your contact information, including your name, organization, phone, and email.

How to Send
♦ Email to: .(JavaScript must be enabled to view this email address) . Send digital photos only at a minimum resolution of 300dpi (preferred method).
♦ Overnight digital photos to: Coping NCSD Issue, 1107 Lakeview Drive, Suite C-2, Franklin, TN 37067.
♦ Mail digital photos to: Coping NCSD Issue, P.O. Box 682268, Franklin, TN 37068-2268.
♦ To send digital photos by FTP: contact .(JavaScript must be enabled to view this email address).

Need Help?
♦ Email: .(JavaScript must be enabled to view this email address)
♦ Call:(615) 790-2400, ext. 24

♦ ♦ ♦ ♦ ♦

By submitting your photo(s), you and your sponsoring organization(s) acknowledge that you have the rights to the photo(s) and grant permission to allow Coping and the National Cancer Survivors Day Foundation to use submitted materials, in whole or in part, in print and electronic formats and for future publicity for National Cancer Survivors Day.

Due to the high volume received, materials, including but not limited to event information, photos, and computer disks, will not be returned. Coping is not responsible for lost, damaged, or unreturned materials.

Cancer-Related Fatigue

Find Out What’s Causing It and What Can Help

by Yesne Alici, MD

Wellness image

Cancer-related fatigue is a distress­ing, persistent, and subjective sense of physical or emotional tiredness that is caused by cancer or its treatment and that interferes with day-to-day functioning. Fatigue is one of the most prevalent and troubling side effects cancer survivors experience both during treatment and after treatment ends. It can significantly diminish a survivor’s quality of life.

What’s Causing Your Fatigue?
By reviewing a detailed history of the onset, pattern, and duration of your fatigue, as well as its triggers and alleviating fac­tors, your doctor will determine what is causing your fatigue. Your doctor may also request tests to look at your blood counts, electrolytes, and liver, kidney, and thyroid gland functioning. Medical conditions, medication side effects, alcohol or substance abuse, poor nutri­tion, pain, depression, anxiety, sleep disturbances, and poor physical fitness are the most common causes of fatigue. The good news is these problems are often treatable. Your oncologist may recommend that you consult with an internist, an endocrinologist, a psycholo­gist, or a psychiatrist, depending on the factors that play a role in your fatigue.

What Can You Do about It?
Physi­cal activity, psychosocial interventions, mindfulness-based therapies, and med- ication are all effective ways to manage cancer-related fatigue. Your fatigue-management plan can incorporate any number of these strategies. Work with your doctor to come up with a plan that is tailored to your specific needs and that applies the strategies that work best for you.

Physical Activity
Engaging in physical activity can help reduce cancer-related fatigue. Moderate levels of physical activity (such as two to three hours per week of brisk walking, cycling, or swimming), in addition to strength training exercises, are generally recom­mended for cancer survivors, unless your doctor advises otherwise. You might consider working with a physi­cal therapist or an exercise specialist to help tailor an exercise program based on your specific needs and physical capabilities.

Many survivors buy in to the misconception that fatigue is an inevitable consequence of cancer and its treatment.

Author of Article photo

Dr. Yesne Alici

Maintaining a long-term fitness routine might be challenging for some cancer survivors because of time con­straints, limited access to exercise facilities, inadequate instruction on appropriate exercises, and physical limi­tations. However, most survivors should regularly engage in some form of basic exercise, such as walking or using a stationary bike. Walking is generally considered a safe physical activity for everyone, but you should always con­sult with your doctor before starting any exercise program.

Psychosocial Interventions
A num­ber of psychosocial interventions are effective in managing cancer-related fatigue. Cognitive behavioral therapy is a form of psychotherapy that focuses on examining the relationships among a person’s thoughts, feelings, and behav­iors. Cognitive behavioral interventions targeting dysfunctional thoughts about fatigue, sleep disturbances, and lack of activity can help you put your cancer-related fatigue in perspective.

Educational programs, such as pam­phlets or online courses that provide information on physical activity, distress management, sleep hygiene, energy res­toration and conservation, and fatigue management, are helpful tools for cancer survivors. Practicing energy restoration and conservation strategies is an espe­cially helpful way to reduce fatigue. Some examples include setting priori­ties, pacing your energy-consuming activities, allowing time for adequate rest, delegating tasks, using energy-saving devices, and participating in enjoyable, restorative activities.

Mindfulness-Based Therapies
Research has shown yoga, acupuncture, and other mindfulness-based therapies to be effective in relieving cancer-related fatigue. Massage therapy, music therapy, and other methods of relaxation also can be helpful. Ask your doctor if he or she knows of any mindfulness-based pro­grams in your community.

Medication
Psychostimulants, such as methylphenidate and dextroamphet­amine, are medications that have been tested and effectively used to reduce fatigue. Talk with your doctor to deter­mine whether you could benefit from this type of medication.

Although fatigue is one of the most distressing side effects of cancer treat­ment, this debilitating condition is often under-recognized and undertreated. Many survivors buy in to the miscon­ception that fatigue is an inevitable consequence of cancer and its treatment; they choose not to report their symptoms to avoid seeming like complainers. On the contrary, cancer survivors should seek relief from cancer-related fatigue. By reporting your symptoms of fatigue to your doctor, you can then work together to devise a plan to reduce your fatigue.

♦ ♦ ♦ ♦ ♦

Dr. Yesne Alici is a psychiatrist at Memorial Sloan-Kettering Cancer Center in New York, NY. She is board certified in psychia­try, geriatric psychiatry, and psychosomatic medicine. She primarily works with people with brain tumors and with older individu­als with cancer.

This article was published in Coping® with Cancer magazine, May/June 2014.

Finding Calm in the Midst of Chaos

by Ashley Varner, MSW, MBA, OSW-C

About Coping

A cancer diagnosis is almost al­ways unexpected. The words “You have cancer” under­standably provoke feelings of fear and confusion, and a sea of questions floods your mind: “What’s going to happen to me?” “What do I need to do?” “How will this affect my family?” It may feel as if your life is spinning out of control, but now is not the time to panic. Instead, consider these concrete approaches to gaining (or regaining) a sense of control.

Take a deep breath.
In fact, take several. Deep breathing interrupts the fight-or-flight adrenaline response to stress. By taking just a moment to breathe deeply, you may find that your heart rate slows slightly and your body feels a little less tense. You may also find that you are better able to focus your attention. Practicing deep breath­ing at bedtime can even help you sleep better.

Make a list of questions you want to ask.
Fear, anxiety, and confusion abound when you have unanswered questions running circles in your mind. Write down your questions, prioritize them, and take your list with you to your medical appointments so you’re sure not to forget any when you’re speaking with your treatment team. The old adage “There are no stupid questions” has never been more true than when you’re facing cancer. You may learn that some of your questions have no easy answer, but even gaining that knowledge can be helpful.

Remember what has helped you through other challenges.
This is a powerful way to affirm your ability to manage your current situation. It also allows you to arm yourself with resources and coping tools that have worked for you during difficult situa­tions in the past.

Arm yourself with resources and coping tools that have worked for you during difficult situations in the past.

About Coping

Ashley Varner

Be wary of the Internet.
It can be tempting to dive into the Internet in search of answers. The challenge is deciphering what’s relevant, accurate, and up to date. Much of the informa­tion you’ll come across on the Internet is inaccurate or not applicable to your unique situation. Many cancer survivors recommend staying off the Internet all together or only visiting trusted sites, such as the National Cancer Institute’s cancer.gov and the American Cancer Society’s cancer.org.

Enlist the support of friends and family.
Consider telling your friends and family what you’re going through and letting them know specifically what they can do to help. For some people, reaching out to friends and family can be hard, but opening up to others and letting them know your needs can provide you with the help you need while strengthening your relationships.

Get some exercise.
Moving the body provides an outlet for nervous energy and promotes the production of feel-good endorphins. Although your schedule is likely very full, with doctor’s appointments tacked on to your everyday duties, walking or engaging in some other type of low-impact exercise may help you focus during the day and give you a sense of inner peace. Remember to talk with your doctor before starting an exercise routine.

Maintain a balanced diet.
When you feel stressed, it’s normal to lose your appetite and eat very little or, on the other side of the spectrum, to crave and indulge in comfort foods. However, fluctuating blood sugar can make you more prone to feeling anxious. Eating several small meals a day can go a long way toward toning down your anxious feelings and help­ing you feel more in control.

Stay hydrated.
Even mild dehydra­tion can affect your mood. Be sure to drink plenty of water, and avoid alco­holic and caffeinated beverages, both of which can contribute to dehydration and anxiety.

Be patient with yourself and with others.
In school, we weren’t taught the best way to respond to a cancer diagnosis. It’s normal to feel uncertain and scared when you or a loved one is facing cancer. Simply remember to take things one moment at a time, and remind yourself that you have faced tough challenges before and you’ll be able to handle this one as well.

♦ ♦ ♦ ♦ ♦

Ashley Varner works as an oncology social worker at the Geaton and JoAnn DeCesaris Cancer Institute at Anne Arundel Medical Center in Annapolis, MD. She is completing her doctorate in social work at the Catholic University of America in Washington, DC, with the help of a grant from the American Cancer Society.

This article was published in Coping® with Cancer magazine, May/June 2014.

Letting Go of Superman

Redefining Masculinity in the Wake of Cancer

by Chris Frey, MSW, ACSW, LCSW

Wellness image

I vividly remember my excitement six years ago as I began to regain my energy, strength, and focus after completing treatment for stage IV throat and neck cancer. However, along with my progress, I found myself be­coming irritated with my wife as she continued to check in with me, asking about my day, reminding me of my commitments, and making sure I was taking care of myself.

For months, my wife had met the gold standard for caregivers. She was compassionate, nurturing, attentive, committed. She had been my advocate, my partner, my coach, and my cheer­leader. So why was I grumbling under my breath (and over my breath), grous­ing as she continued to act in her gently protective way when I was forgetful, slow to regain weight, or reluctant to get out of the house?

The Threat to Masculinity
In a moment of clarity, I realized that as I recovered, I was asserting my masculine need to be seen as independent and com­petent, two aspects of my identity that I believed had been seriously compro­mised by cancer. This was exacerbated by my growing awareness that, while some of the side effects of my treatment were temporary (extreme fatigue, chemo brain), others were permanent (face and shoulder numbness, dry mouth, thyroid issues, skin damage, radiation tattoos, my vivid sense of mortality). I was ad­justing to being forever changed, inside and out. The extended period of my dependence on the physical, financial, and emotional care of others coupled with the lingering impact of cancer found me at times responding to sim­ple, well-intentioned questions and concerns as an affront to my manhood.

Author of Article photo

Chris Frey

My feelings and actions are not unique among male cancer survivors. We’re immersed in a culture that teaches that independence and productivity are at the core of a man’s worth. The level of vulnerability brought forth by cancer often challenges our traditional male values, posing a very basic threat to our masculinity.

The Challenge to Treatment
Strength, independence, and self-reliance are valued qualities among men, and these can be essential to your ability to commit to the rugged road of cancer treatment and maintain the motivation required to fully participate in your treat­ment plan. However, the degree to which you adhere to traditional gender roles can affect your ability to be straight-forward with your healthcare team and allow yourself to get the physical, emo­tional, and spiritual support you need.

It’s not uncommon for a man to re­spond to his doctor’s question of “How are you doing?” with “Pretty good” or “Fine” when this is not the truth. If you’re struggling with treatment-related side effects, this lack of transparency can greatly affect the quality of your care. Further, it can result in isolation and overdependence on your primary caregiver, conflicting with your desire for independence. To get the medical and psychosocial support you need to improve your quality of life, you must work with your entire healthcare team and let them know about any ongoing physical and emotional issues you’re experiencing. This may require adopt­ing a broader definition of manhood.

A New Point of View
In speaking with male cancer survivors and their loved ones, I hear story after story of men who, like me, found cancer to be an attack on their vital sense of autonomy and competence. Usually, these stories begin with, “Well, you know the way men are …” However, if we believe this rigid male way of functioning is com­pletely hard-wired, without the option of choice, we cannot push beyond our comfort zones to accept support, even when we need it most.

Rather than viewing cancer as an attack on your manhood, another possibility is to think of cancer as an extraordinary challenge that calls for extraordinary resources. Within this challenge lies the opportunity for you to retain independence, strength, com- petence, and self-reliance while cultivating tools to combat feelings of isola­tion, dependency, and weakness, and reclaim your sense of control. Remem­ber that courage comes in many forms. It takes a special kind of daring for us as survivors to step beyond our comfort zones, allowing others to see not only our strength but also our vulnerability.

♦ ♦ ♦ ♦ ♦

Chris Frey is a psychotherapist, teacher, and stage IV throat and neck cancer survivor living in St. Louis, MO. He is the author of I’m Sorry, It’s Cancer: A Handbook of Help and Hope for Survivors and Caregivers.

This article was published in Coping® with Cancer magazine, May/June 2014.

Adopting Your New Normal after a Diagnosis of Metastatic Breast Cancer

by Neal Niznan, MSW, LCSW

Breast Cancer image

"Toto,I have a feeling we’re not in Kansas anymore,” Dorothy tells her little dog in the film The Wizard of Oz as she looks at the surreal landscape of Munchkin Land, realizing that the familiarity of her life has dramatically changed. Maybe you experienced a similar real­ization when you heard the words metastatic disease.

Whether these words were spoken during your initial diagnosis or after many years as a breast cancer survivor, a diagnosis of metastatic breast cancer makes you stop and ponder if your life will ever get back to normal. Unlike Dorothy, who awoke to the relief that her misadventures in Oz were only a dream, you live the reality of your illness daily, waking each morning to its new challenges. However, like Dorothy, you can meet these chal­lenges by adapting to your “new normal.” By focusing on what is im­portant to you, setting manageable goals, and receiving support from others, you can reclaim a sense of emotional well-being and normalcy.

Lions and tigers and chemo, oh my!
Deciding to adapt to your new circum­stances, rather than pretend they will simply go away, allows you an oppor­tunity to set positive goals for yourself. Dorothy faced many adversities on her path to the Emerald City – angry apple trees, flying monkeys, and the Wicked Witch of the West, who initially thwarted her plans to get back home. However, Dorothy was goal oriented and knew what she wanted to achieve despite the challenges set before her.

Developing your new normal requires you to identify what you need and want in life, set goals, and work hard to reach those goals.

Author of Article photo

Neal Niznan

Developing your new normal requires you to identify what you need and want in life, set goals, and work hard to reach those goals. Part of adopting a new nor­mal is figuring out how to maintain as much of your pre-cancer life or regular routine as possible within the context of the changes that are happening around you. This means incorporating the de­mands of treatment along with a need for downtime into your daily schedule.

Don’t forget that Dorothy also took time to dance and sing with her friends along the yellow brick road. Making time for activities that you enjoy – ones that are creative, nurturing, and fun – is important in bridging the gap between your familiar, pre-cancer life and your new normal.

We’re off to see the Wizard.
It was through the support and dedication of her friends that Dorothy was able to persevere along her difficult journey. Collectively they protected and encour­aged one another and celebrated each accomplishment.

Many survivors say their friends and family don’t really understand what they’re going through: “They don’t hear me. They don’t even know what I need.” Selecting the right friends and family to support you is integral to maintaining your new normal. Whether you connect with a group of other breast cancer survivors or sit down with close friends to ask if they are able to help, this will ensure that you have the tan­gible and emotional support you need along the way. Choose individuals who can truly support you, and try not to pursue those who have a nega­tive attitude or can’t be there for you in the way you need them to be.

There’s no place like home.
Dorothy’s ultimate goal was to get home to the people and things that she valued most. Likewise, your new normal should incorporate the people and val­ues that give your life a sense of meaning or purpose. In the beginning of the film, Dorothy had become dis­pleased with life on the farm and decided to run away from her situation. As was true for Dorothy, it often takes a life-altering event for us to realize what is truly important in our lives. Focusing on our values and setting goals that reflect them is a step toward creating a new normal that gives you a genuine sense of purpose.

After a diagnosis of metastatic breast cancer, your journey toward adopting a new normal gives you an opportunity to find strength within yourself as you adapt to changes you did not choose for your life. Setting goals that reflect your values and meet your needs, choosing friends who provide support and comfort, and taking time for enriching activities will help you feel more “at home” with your new normal.

♦ ♦ ♦ ♦ ♦

Neal Niznan is an oncology social worker in the Department of Radiation Oncology at the Hospital of the University of Pennsyl­vania in Philadelphia, PA, and he maintains a private psychotherapy practice for indi­viduals, couples, and families.

This article was published in Coping® with Cancer magazine, May/June 2014.

A Conversation with Oscar-Winner
and Two-Time Cancer Survivor Kathy Bates

by Jessica Webb Errickson

Celebrity Cancer Survivor


(© Warner Bros. Entertainment Inc.)

From Broadway to the big screen, veteran actress Kathy Bates has captivated audiences and critics alike with her genre-defying talent. Though she didn’t star in a hit movie until age 42, the old saying “good things come to those who wait” rang true for Kathy, as her portrayal of hammer-wielding psychopath Annie Wilkes in the 1990 film adaptation of Stephen King’s Misery garnered critical acclaim, winning Kathy an Oscar for Best Actress. Since rocketing into the spotlight, she’s racked up a mile-long list of acting credits, including lead and supporting roles in Fried Green Tomatoes, Dolores Claiborne, Titanic, and Midnight in Paris, as well as the NBC television drama Harry’s Law and the hit FX series American Horror Story, to name only a few.

For an A-list celebrity of Kathy’s caliber, privacy is hard to come by. Walk past any magazine stand and you’ll see cover after cover splashed with stories focusing in on stars’ per­sonal lives. Cue the media’s collective surprise when Kathy revealed in 2009 that she had silently fought ovarian cancer – more than five years earlier.

Having just signed on to appear in the movie Little Black Book, Kathy some­how managed to avoid media attention as she endured a complete hysterectomy and nine rounds of chemotherapy. Only the people closest to her knew her secret. But several years later, a fellow cancer survivor inspired the actress to come clean about her experience.

“Seeing [breast cancer survivor] Melissa Etheridge in concert with her bald head, wailing on her electric guitar, she was a force to be reckoned with,” Kathy recalls. “I realized it wasn’t necessary to hide. Nobody should be ashamed to have cancer.”

With this revelation in mind, when a CT scan in 2012 revealed a tumor in her left breast and something suspicious in the right, Kathy didn’t hold back, boldly announcing via Twitter that she had been diagnosed with breast cancer and was recovering from a double mastectomy.

Cancer-free and working hard as ever, having recently wrapped filming for the movie Boychoir (due out later this year) and signed on for the next installment of American Horror Story, the two-time survivor candidly shares with Coping magazine the details of her cancer journey and offers a message of comfort and support for her fellow cancer survivors.

Coping magazine: Emotionally, what were some of the more difficult things you had to face going through treatment and during recovery?
Kathy Bates: After my hysterectomy, I went to work on a film as soon as I got out of the hospital. I was lucky that I had someone to do my makeup and hair every day. But when the shoot was over, I had to do that myself. I’m not much on wearing makeup anyway, so that was a real chore, especially when I was feel­ing weak. I was so pale, and I had no eyebrows. It sounds like a silly thing, but I had to work at looking good so I could feel good about going out in public. After the first couple rounds of chemo, I began to feel very tired, so I stopped working and just focused on getting well.

With breast cancer, it was a much more emotional experience for me. My TV show [Harry’s Law] got cancelled because our audience was “too old,” and then my breasts got cancelled. I felt old and unwanted.

Celebrity Cancer Survivor

Kathy Bates in character as the evil Madame Delphine LaLaurie on the FX series American Horror Story: Coven
© Michele K. Short/FX

What made you decide to undergo a double mastectomy?
When my oncologist called with the news that I had breast cancer, I didn’t miss a beat. I said, “Take ‘em both off.” I then spent two weeks looking at all my options to make an informed rather than an emotional decision, but I de­cided to go with my instincts. I had seen my mother and my niece, who both had breast cancer, go through it with one breast removed. They always seemed to struggle with posture and brassieres. I didn’t want to worry about getting cancer in the other breast. I wanted to be free.

Have you experienced any lasting side effects?
My surgeon removed quite a few lymph nodes under my arms, but thankfully I only have mild lymphedema. While you’re dealing with the cancer, that’s what you’re focused on, so lymphedema often isn’t talked about until well after surgery, and sometimes not at all. People with lymphedema can be frightened to discover that they will have to deal with this condition for the rest of their lives. I still require treatment for the lymph­edema to keep my arms from swelling. Dr. Emily Iker of the Lymphedema Center in Santa Monica, CA, has been treating me regularly. I also need to wear compression sleeves on airplanes, and sometimes I wear them while driving long distances.

How has being a two-time cancer survivor affected your career?
You know, it doesn’t come up a lot. On American Horror Story last year, we were doing a trick shot through my right arm and my waist, focusing on my hands. There was a shadow on the side of the frame, and it turned out to be my “breast.” I said to the director, “Look, I can take this out. It isn’t real.” He was a bit embarrassed, but I assured him it wasn’t a problem. I went to a corner, pulled out the prosthesis, and we got the shot.

On the red carpet recently, some­one asked me if I could have any magical power, what would it be. When I said I wanted to have the power to cure cancer, the interviewer’s mike dropped about a foot, and out of the corner of my eye, I saw the camera sag on the camera­man’s shoulder. It just made me laugh. Nobody likes to talk about cancer.

What one good thing has come from your cancer experience?
I recently had an opportunity to have breast reconstruction, but at the last minute I decided I was feeling so good that I didn’t want to go back to surgery, to bed rest, to being on pain medication. I realized that I already had what I wanted most, which was to be happy, have energy, work, be with friends, and live life.

What advice would you give to people recently diagnosed with cancer?
It’s no picnic, but it’s not necessarily a death sentence either. Go through the initial panic, and when that dies down, focus. Listen to your doctors, and ask questions; the more you know, the better. But stay off the Internet at night worry­ing. Rest instead. Be good to yourself.

Use your chemo time to visualize yourself becoming healthy, no matter how silly the fantasy may seem. The rest of the time, try not to dwell on can­cer. You are not your cancer. It doesn’t define you. You can decide who you want to be.

On the positive side, cancer can be a wake-up call. Take the opportunity to enjoy life and be a kinder person. You’re still at the party, so have a good time until last call.

♦ ♦ ♦ ♦ ♦

This article was published in Coping® with Cancer magazine, May/June 2014.

Cancer Survivors to Celebrate Life on National Cancer Survivors Day – Sunday, June 1, 2014


Inspiration image

On Sunday, June 1, 2014, cancer survivors across the globe will unite to show the world what life after cancer looks like. This unique celebration will mark the 27th annual National Cancer Survivors Day. Thousands of people in hundreds of communities across the U.S. and abroad will hold celebrations on this day to honor cancer survivors and to show that there is life after a cancer diagnosis – and it’s something to celebrate.

National Cancer Survivors Day is an annual worldwide Celebration of Life. It is the one day each year that we come together to honor everyone who is living with a history of cancer – including America’s 14 million cancer survivors. “A ‘survivor’ is anyone living with a history of cancer – from the moment of diagnosis through the remainder of life,” according to the National Cancer Survivors Day Foundation, administrator for the celebration.

NCSD provides an opportunity for cancer survivors to connect with other survivors, celebrate milestones, and recognize the healthcare providers, family, and friends who have supported them along the way. It is a day for cancer survivors to stand together and show the world what life after cancer looks like.

“Sometimes people have very negative ideas of what life after cancer looks like,” says Foundation spokesperson, Laura Shipp. “But the reality is that more people are living longer and better quality lives after cancer than ever before. These survivors are showing us that life after cancer can be meaningful, exciting, and filled with joy.

“National Cancer Survivors Day is an opportunity for cancer survivors to come together and celebrate this new reality in cancer survivorship. There is life after cancer. It may not be the same as before cancer, but it can be beautiful, rewarding, and sometimes even better than before. And that’s something to celebrate.”

NCSD activities will be as diverse as the communities where the events are being held and will include parades, carnivals, walks, races, art exhibits, health fairs, inspirational programs, and more. There will be laughter and tears, shouts of joy and moments of quiet reflection, hope for the future and strength to endure today, and maybe even a little music and dancing.

The National Cancer Survivors Day Foundation is encouraging everyone to participate in their community’s event. To locate the one nearest you, check with your local cancer treatment center, hospital, or American Cancer Society office. Or you can host an event of your own. The NCSD website, ncsd.org, has everything you need to plan a successful NCSD celebration.

NCSD started in the United States in 1987 and is now celebrated worldwide in countries including Canada, Australia, India, South Africa, Greece, Great Britain, Spain, and Nigeria, according to Shipp.

The nonprofit National Cancer Survivors Day Foundation provides free guidance, education, and support to hundreds of hospitals, support groups, and other cancer-related organizations that host National Cancer Survivors Day events in their communities. The Foundation’s primary mission is to bring awareness to the issues of cancer survivorship in order to better the quality of life for cancer survivors.

Cancer survivors may face physical, emotional, social, and financial challenges as a result of their cancer diagnosis and treatment. Many are confronted with limited access to specialists, a lack of information about promising new treatments, inadequate or no insurance, difficulty finding employment, and psychosocial struggles.

“To say that cancer is challenging is an understatement,” says Shipp. “But it is a challenge that millions of people – 14 million in the U.S. alone – are overcoming. The NCSD Foundation hopes that through National Cancer Survivors Day, we can not only bring awareness to the issues survivors face but also honor for the courage and strength of all those who are living with a history of cancer.”

The National Cancer Survivors Day Foundation is encouraging a greater commitment to resolving quality of life issues for cancer survivors. “More resources, research, and increased public awareness are needed to improve the quality of life of cancer survivors,” says Shipp. “Because of advances in modern medicine, cancer survivors are now living much longer after diagnosis. However, long-term survivorship poses its own unique challenges. We need to do a better job of addressing the hardships survivors face beyond treatment.”

Leading up to the event, the Foundation urges everyone – cancer survivors and supporters alike – to show the world what life after cancer looks like. The following are suggested posts for your social media sites.

On Facebook: Let’s show the world what life after cancer looks like! Celebrate life on National Cancer Survivors Day - Sunday, June 1. facebook.com/CancerSurvivorsDay

On Twitter: Let’s show the world what life after cancer looks like! Celebrate life on National Cancer Survivors Day, June 1. #NCSD2014 @SurvivorsDay

About the National Sponsors:
National Cancer Survivors Day 2014 is sponsored nationally by Bristol-Myers Squibb and Coping with Cancer magazine, with support from Amgen, Astellas, Genentech, Millennium: The Takeda Oncology Company, and Teva Oncology.

♦ ♦ ♦ ♦ ♦

Partners in Survival

When a Woman You Love Has Breast Cancer

by Marc Heyison

Author of Article photo

Marc Heyison

“Your mother has breast cancer.” These frightening words were spoken to me in 1992. Today my mom has been cancer-free for almost 22 years. Her courage inspired me to become an advocate in the fight against breast cancer, with a mission to educate and empower men to be effective caregivers when breast cancer strikes a loved one.

I want to offer you some tips on how to support the woman in your life who is going through her own battle with breast cancer, whether she be your mother, sister, or significant other. While I can’t give you the answers to all the questions flooding your mind, I can offer the insights I have gathered from my own experience and from men I’ve spoken to across the country who are in similar situations as you.

Stand by her side.
Each family’s situation is unique. What works for one family may not work for yours. Your family dynamics will dictate your path and how best to navigate it. The first step is making sure your loved one with breast cancer knows that you are by her side. She needs to know that you love her, you love her, and you love her some more. Show her that you are navigat­ing this crisis with her the whole way through. Your support will improve her quality of life and give you both a semblance of control over an uncontrollable situation.

Have conversations with your loved one early on, and continue to have them often to find out how you can support her as her needs change.

Maintain open and honest communication.
A big part of sup­porting the woman in your life who is battling breast cancer is being open and honest with her. This allows you to connect with her and reinforces that you are there for her. The two of you are partners in the breast cancer journey. And any good partnership requires effec­tive communication. I encourage you to start sharing your feelings with one another, even your fears, which are normal and valid. Have conversations with your loved one early on, and continue to have them often to find out how you can support her as her needs change. Ask her how you’re doing as a caregiver, and ask what else you can do to provide support. Don’t be afraid to let her know your needs, too, in an open, honest, and appropriate manner. After all, you can’t help each other if you don’t know what the other needs.

Don’t forget to take care of yourself.
While you’re caring for your loved one with breast cancer, be sure to continue taking care of your own physical and emotional health. Exercise, eat right, and above all, find a healthy way to express your emotions. Just as you would go to the doctor to fix a broken bone, it’s important to reach out to talk to someone if you’re struggling emotionally. This is a sign of strength, not weakness.

Guys, I know that this is scary stuff. But committing to do what­ever it takes to support the woman you love through breast cancer reinforces that you are in this together and you’re not going anywhere.

♦ ♦ ♦ ♦ ♦

Marc Heyison is the president and founder of the nonprofit organization Men Against Breast Cancer (MenAgainstBreastCancer.org, twitter.com/MABCcares) and author of It’s Not Rocket Science: A Guy’s Blueprint to Caregiving.

This article was published in Coping® with Cancer magazine, March/April 2014.

Surviving the Emotional Roller Coaster of Cancer

by Anis Rashid, MD

Wellness image

Living with cancer is like being on a roller coaster ride, one that affects not only your physical health but also your emotional and spiritual well-being. A variety of emo­tions may surface as you go through each phase of the ride – from that first big hill of your initial diagnosis to the ups and downs of active treatment to the unexpected twists and turns of survivorship.

Everyone’s situation is different, but after a cancer diagnosis, it’s common for anxiety to remain high for the next few weeks. During this difficult period, you may experience feelings of fear, powerlessness, uncertainty, and a lack of knowledge about the disease.

As you learn more details about your cancer, you are flooded with volumes of information and face difficult treatment decisions. You may feel overwhelmed and fear that you’re losing control of your life, your job, and your relation­ships. You may lose sleep, as well as your appetite.

Some of the common side effects of chemotherapy, such as fatigue and loss of appetite, are similar to those of depression.

Author of Article photo

Dr. Anis Rashid

Once treatment begins and your initial anxiety starts to subside, you may be sidelined by treatment-related side effects. Cancer treatments can leave you feeling fatigued, and chemotherapy-induced nausea and vomiting can further reduce your appetite, causing you to lose weight. You may worry that you are being a burden on your family and friends, which may lead you to be­come socially withdrawn and possibly even depressed.

Navigating life with cancer isn’t easy. But the good news is that with the aid of cognitive-behavioral therapy, medication (if needed), and support from your family, friends, and faith, you’ll be better prepared to manage these difficult emotions.

Seek Out Help
Some of the common side effects of chemotherapy, such as fatigue and loss of appetite, are similar to those of depression. A mental health provider can evaluate your symptoms and correctly diagnose you with a mood or anxiety disorder if you have one. Then, cognitive-behavioral therapy and prescribed medications can help you cope.

You may reach a point when you feel like you just don’t care anymore. This emotional numbness is alarming and needs attention. Let someone know if you’re feeling this way. Close moni­toring, medication, and psychological support from a mental health provider, as well as your family and friends, are important at this point.

Find Meaning
When diagnosed with a life-threatening illness, it’s not uncommon for a person’s faith to falter. During your cancer experience, you may find yourself searching for mean­ing in life and going through a phase of spiritual distress. If this is the case, it may be helpful to visit with a chap­lain. Taking some time to redefine your values and roles in life can also bring peace to a troubled mind.

Take Back Control
Once you achieve remission, you might expect to return to your pre-cancer state of emotional well-being, but this isn’t always the case. Instead, you may find yourself struggling with the fear of recurrence. Even a simple cough or minor abdominal pain may trigger this fear. Continued mental health assistance can help you manage these fears. Once you learn to take back control of your life by being proactive about your mental health, you can begin your path to emotional recovery.

Cancer can be a wild, twisting roller coaster ride that turns your life upside down. But with support from your family and friends and the guidance of men­tal health professionals, you’ll be better equipped to strap yourself in and hang on for the ride.

♦ ♦ ♦ ♦ ♦

Dr. Anis Rashid is an associate professor of Psychiatry at The University of Texas MD Anderson Cancer Center in Houston, TX.

This article was published in Coping® with Cancer magazine, March/April 2014.

The Language of Comforting

What to Say (and What Not to Say) to Someone Facing Cancer

by Val Walker

Wellness image


(Photo by NSP Images / Bigstock.com)

It can be hard to find the right words to say to comfort someone coping with cancer. At times, we might even avoid contact completely because we fear saying the wrong thing. Here are some suggestions for what to say – and what not to say – to a loved one, friend, or coworker facing cancer.

Author of Article photo

Val Walker

 

The most important things you can offer someone going through cancer are your presence, empathy, patience, reliability, sincerity, love, and uninterrupted attention. Good listening is more than just hearing words. Silence your phone, and don’t text, check messages, or do anything else when you’re listening – multitasking is not comforting. Listen with your heart, and tune in to what the person is truly saying.

♦ ♦ ♦ ♦ ♦

Val Walker, a rehabilitation counselor and grief consultant, is the author of The Art of Comforting: What to Say and Do for People in Distress. Keep up with Val at ComfortingInAction.com.

This article was published in Coping® with Cancer magazine, March/April 2014.

Diagnosis: Prostate Cancer

Let’s Talk about the Side Effects

by Mark A. Moyad, MD, MPH

Author of Article photo

Dr. Mark Moyad
(Photo by University of Michigan Photo Services)

If you’ve been diagnosed with prostate cancer and have ques­tions about treatment-related side effects, you’ve come to the right place. Here, we’ll review common side effects from some of the conventional prostate cancer treatments, as well as what can be done to alleviate them or reduce their impact.

Depression and Mood Changes
Simply being diagnosed with cancer and going through any treatment can be a challenge, physically and mentally. Therefore, it is important to discuss mental health before, during, and espe­cially after prostate cancer treatment of any kind. Whether you are waiting for your next PSA test result, trying to get into a clinical trial, or experiencing a new side effect, cancer can be stressful.

Prescription medications are avail­able and effective for treating depression. The most common medication classes for depression are known as selective serotonin reuptake inhibitors (SSRIs) and serotonin-norepinephrine reuptake inhibitors (SNRIs). More­over, research shows that exer­cise may play a role in preventing depression, and in individuals on antidepressant med- ication, exercise may improve the efficacy of the medication. Talk to your doctor about your options.

Erectile Dysfunction and Loss of Libido
Erectile dysfunction is the inability to achieve or maintain an erection adequate for sexual activity or intercourse, while a loss of libido simply means feeling uninterested in sexual activity. Most prostate cancer treatments have the ability to cause some degree of erectile dysfunction or libido problems. In general, localized prostate cancer treatment (surgery, radiation, cryotherapy) has traditionally been associated with erectile dysfunc­tion, and androgen deprivation therapy (ADT) or hormone manipulation has been associated with a loss of libido.

Simply being diagnosed with cancer and going through any treatment can be a challenge, physically and mentally.

Erectile dysfunction can occur days, weeks, or months after prostate cancer treatment. Some doctors encourage men to use a variety of erectile dysfunction treatments (pills, pumps, etc.) soon after prostate cancer treatment to help reduce the risk of future erectile prob­lems. This is called penile rehabilitation. Making some lifestyle changes can also be beneficial. Exercising, maintaining low blood pressure and cholesterol, and losing weight can all help to improve blood flow to the penis.

Incontinence
This is a partial or complete loss of urinary control, also known as leakage and dribbling. Pros­tate cancer treatments such as surgery, radiation, and cryosurgery are the more common causes of incontinence, but the prevalence of this side effect has decreased dramatically over the years. Today, only a small percentage of men experience incontinence that requires a pad after treatment.

There are many options available for preventing and treating incontinence, including Kegel exercises, which you can do before and after treatment. These exercises involve strengthening the pelvic muscles by tightening the muscles of the pelvis or buttocks as if you were stopping and starting the urine flow. Regular practice of Kegel exer­cises may reduce leakage or correct it permanently, but the results may vary from individual to individual. On aver­age, these exercises should be repeated at least several times a day for several weeks or months.

The opinions of doctors on the importance and frequency of Kegel exercises and on other incontinence treatments after prostate cancer treat­ment can vary significantly. Keep in mind that special undergarments, briefs, pads, pills, inserts (catheters), injections, biofeedback, and even surgery are all viable options for managing and treat­ing mild to severe incontinence.

Penis and Scrotum Shrinkage
If the nerve bundles that run along the prostate and help to control erections become injured or less active, a small change in length or width of the penis can occur. Additionally, male hormone helps main­tain the size of the genital area, so a reduction in testosterone can potentially reduce penis and scrotum size.

Any treatment that may affect male hormone levels or the nerves near the prostate could potentially affect penis size. Therefore, most prostate cancer treatments, from surgery to radiation to ADT, could have this impact.

The “use it or lose it” phenomenon of the human body can help prevent this problem. Talk to your doctor about regularly using erectile dysfunction treatment methods in order to maintain nerve stimulation and penis size. Pills, injections, pumps, and other methods of improving erectile function can also help prevent size reduction of the genital area. Talk to your doctor about your options.

♦ ♦ ♦ ♦ ♦

Dr. Mark Moyad works in the Department of Urology at the University of Michigan Health System in Ann Arbor, MI, and is the Jenkins/Pokempner Director of Preventive & Alternative Medicine. Adapted with permission from Promoting Wellness for Prostate Cancer Patients: A Guide for Men and Their Families, fourth edition, by Mark A. Moyad, MD, MPH, copyright © 2013 by Spry Publishing.

This article was published in Coping® with Cancer magazine, March/April 2014.

What Cancer Means to Me Now

by Patricia Prijatel

I sometimes play the “what if” game. What if I had never moved to Iowa? What if I had more kids? What if I had been born rich? What if I never had cancer?

Nothing good ever comes from play­ing that game, and adding the cancer card doesn’t make it any more fulfill­ing or fun. I have no idea how my life would have been different without cancer. I do know that I am a different person from who I was before I got sick, and I like this person better. She has a much broader view of what life means than she used to.

I am more introspective, more un­derstanding, more thoughtful. I was OK in these areas before, but I feel cancer added another layer to my per­sonality, an ability to look deeper, to care more about others, to see what I had been blind to before – the fact that my life is good and it is up to me to keep it that way and, perhaps, try to make it better.

I will never consider cancer a gift, although others say they see it that way. I do have to acknowledge that it has made me live a more rewarding life. I wish I could have done that on my own, without this scare, but it didn’t happen that way.

Cancer was not a blessing, but it did help me see the blessings that surround me.

Cancer was not a blessing, but it did help me see the blessings that sur­round me – my family and friends, my career, my mind, my overall health. I eat healthier, I exercise more purposefully, I do yoga, I meditate. My husband, Joe, and I found a new church and, through it, have become a part of a community that makes me think about small, meaningful moments, big re­sponsibilities, and how I live my life as a good person. I drink less. I see my acupuncturist regularly, just because she calms me so much.

That’s another thing; I feel so much calmer than I ever have in my life. I get a sense of calm through meditation and prayer, by talking with good friends and family, and by taking deep breaths. I get there by looking at the beauty around me and just enjoying it.

Three years after my diagnosis, my first grandchild, Tarin Gram, was born. Eighteen months later, we welcomed his brother, Eli Finn. I am so grateful that I have seen the birth of these two beautiful little boys, and I plan to be around to see them grow up. I’ve hap­pily returned to the classroom part time, and I lead several writing work­shops, so I am once again in the midst of students.

All is well now. But I really wish my hair had stayed curly.

♦ ♦ ♦ ♦ ♦

Patricia Prijatel is a triple-negative breast cancer survivor and an E.T. Meredith Distinguished Professor Emerita at Drake University in Des Moines, IA. This article is adapted from her book Surviving Triple-Negative Breast Cancer, which is available on amazon.com. Check out Patricia’s blog at HormoneNegative.blogspot.com.

This article was published in Coping® with Cancer magazine, March/April 2014.

Eat Well. Be Well.

The Scoop on Overcoming Barriers to Good Nutrition

by Mary-Eve Brown, RD, LDN, CSO

Wellness image

When you’re being treated for cancer, it can be difficult to get the nutrition you need. Side effects of the disease and its treat­ment can interfere with your ability to eat well. However, research has shown that people who maintain their weight and strength during treatment are better able to handle treatment-related side effects and have an overall better quality of life. If you’re having trouble eating well during treatment, consider the fol­lowing strategies for overcoming the barriers to good nutrition.

Reduced Appetite
When your appe­tite is low, it may be easier for you to eat smaller, more fre­quent meals. Your body requires more protein while you’re re­ceiving cancer treatment, so be sure to include a source of protein in each meal. Some high-protein foods to consider are nonfat or reduced-fat milk, yogurt, soy, eggs, nuts, beans, fish, poultry, and beef.

When you don’t have much of an appetite, sometimes drinking can be easier than eating. All caffeine-free fluids are hydrating, so by drinking nourishing, nutrient-rich beverages, you’re getting nutrition plus hydration – an added benefit. Try vegetable juices, fruit and vegetable juice blends, smoothies, shakes, creamy or blended bean-based soups, and soy or dairy milk, all of which contain needed calories, protein, vitamins, and minerals.

Eating well is an important part of feeling well.

Author of Article photo

Mary-Eve Brown

Mouth Sores
When you’re experi­encing painful mouth sores, you’ll want to eat foods that are soft, moist, and at room temperature or colder, like avocados, cooled soups, yogurt, cottage cheese, applesauce, hummus, mashed beans, mashed potatoes, melons, bananas, and eggs.

Nausea
Eating small portions of cold or room-temperature foods will help keep you from being overwhelmed by food smells that might exacerbate your nausea. Avoid greasy, fried, spicy, and sweet foods. Instead, eat bland dishes, such as pasta with olive oil, broth-based soups, sherbet, yogurt, or baked potatoes topped with cheese. Drinking ginger tea, a natural nausea remedy, can also be helpful. Boil a teaspoon and a half of peeled and grated ginger root in two cups of water for ten min­utes, let cool, and enjoy.

Fatigue
To conserve your energy, choose foods that require little chewing, like pudding, yogurt, eggs, hummus, and smooth peanut butter. Keeping foods on hand that require little to no prep work can also help you conserve your energy. Stock up on foods that are ready to cook, frozen meals, and indi­vidually portioned foods. If possible, ask friends and family to help you shop for groceries and prepare meals when your energy is low.

Eating well is an important part of feeling well. If you’re still experiencing barriers to eating well and getting the nutrition you need, consider seeking out a registered dietitian in your area who can individualize an eating plan to meet your needs.

♦ ♦ ♦ ♦ ♦

Mary-Eve Brown has been a registered dietitian with the Academy of Nutrition and Dietetics for more than 20 years. She is also a board-certified specialist in oncology with the Academy, and has been an outpatient oncology dietitian at the Johns Hopkins Sidney Kimmel Compre­hensive Cancer Center in Baltimore, MD, for more than 13 years.

This article was published in Coping® with Cancer magazine, March/April 2014.

What Breast Cancer Survivors Need to Know about Osteoporosis & Vitamin D Deficiency

by Nancy Waltman, PhD, APRN-NP

Wellness image

Milk and other dairy products are great sources of calcium, which is essential for strong bones.

Osteoporosis is a major health concern for postmenopausal women, and breast cancer survivors are at even greater risk for developing the condition. Here’s why: Breast cancer treatment can involve blocking the body’s production of estrogen. This is necessary because estrogen can drive cancer cell growth. However, estrogen also promotes bone health, so a drop in estrogen levels increases a woman’s risk for developing osteoporosis. The following are steps you can take to reduce that risk.

Ask your doctor about bone mineral density (BMD) testing.
All premenopausal women with cancer treatment-induced menopause, postmenopausal women receiving estrogen-blocking drugs (such as aromatase inhibitors), and all women over 65 should undergo BMD testing. BMD test results diagnose both early bone loss and osteoporosis, allowing you to address the issue before it becomes more serious.

Make sure you’re getting enough calcium and vitamin D.
Calcium and vitamin D are essential for strong bones. Calcium is the “building block” of bone, and vitamin D helps to absorb the cal­cium you ingest so it can be used by the bone.

Author of Article photo

Dr. Nancy Waltman

Women should be getting 1200 mg of calcium daily, either through their diet or with the help of a supplement. Milk and dairy products are good sources of calcium, but you may need to take a calcium supplement, depend­ing on how much calcium you’re getting from your diet. For reference, an eight-ounce glass of milk contains 300 mg of calcium.

Many breast cancer survivors have vitamin D deficiencies, which increases their risk for bone loss. To find out whether you have a vitamin D deficiency, your doctor can perform a test to deter­mine the amount of vitamin D in your blood. The best sources of vitamin D are fish (such as salmon), vitamin D-fortified milk, and sunlight, but most breast cancer survivors should be taking vitamin D supplements daily. Talk with your doctor to determine your appro­priate daily dosages of both calcium and vitamin D supplements.

Make positive lifestyle changes.
Excessive use of alcohol, tobacco, and caffeine; chronic stress; an unhealthy diet; and systemic inflammation can increase your risk of osteoporosis. Mak­ing some simple lifestyle changes to decrease these risk factors can help lessen your chance of bone loss.

Engage in regular weight-bearing and resistance exercises.
All adults should do 150 minutes of weight-bearing exercises (such as walking or jogging) per week and resistance exercises (such as lifting weights) twice weekly. Weight-bearing and resistance exercises can reduce your risk of osteoporosis be­cause increased muscle strength puts greater demands on bones, resulting in stronger bones and reduced bone loss. Exercise also improves balance, thereby reducing your risk of falling, which can result in fractures.

Take bisphosphonate medications as prescribed.
Bisphosphonates, such as alendronate, risedronate, and ibandro­nate, are relatively safe and are effective in both maintaining and building bone mineral density. Ask your doctor if you should be taking bisphosphonates.

As a breast cancer survivor, you are a member of a very special sisterhood of women who are tough, resilient, and able to take on any challenge that comes their way. One ongoing challenge for you will be to maintain the health of your bones, but it’s certainly a doable one.

♦ ♦ ♦ ♦ ♦

Dr. Nancy Waltman is a professor at the University of Nebraska College of Nursing in Omaha, NE. She has conducted research on vitamin D and exercise to promote bone health in breast cancer survivors for more than 15 years.

This article was published in Coping® with Cancer magazine, March/April 2014.

Hope for the Future

Preserving Fertility in the Face of Cancer

by Laxmi A. Kondapalli, MD, MSCE

Knowledge image

With cancer survival rates steadily increasing, what was once considered a “terminal illness” now allows people to imagine a life after cancer with expectations beyond survival. However, some of the new life-saving treatments contributing to increased survival can negatively affect fertility, causing delays in child­bearing or even compromising a person’s ability to have children in the future. Fortunately, over the last several decades, the emergence of the medical discipline of oncofertility and the development of new fertility preservation techniques have made the dream of building a bio­logical family a reality for many cancer survivors. With this in mind, it’s impor­tant to discuss with your oncologist the possibility of infertility and ask about your fertility preservation options as early in the treatment planning process as possible.

How does cancer treatment affect fertility?
Women are born with all the oocytes (eggs) they will have in their lifetime. A woman’s ovary con­tains thousands of follicles, called the ovarian reserve, and each follicle contains a single egg. During each menstrual cycle, a group of immature follicles begins to grow, but only one goes on to fully develop and release its egg during a process called ovulation. The number of follicles in the ovarian reserve naturally declines with age, but cancer treatments like chemotherapy and radiation can destroy the follicles in the ovary, accelerating the natural decline of the ovarian reserve. As a result, some women may face temporary or early menopause.

For women who have gone through puberty, the established methods for fertility preservation are embryo and oocyte banking.

Author of Article photo

Dr. Laxmi Kondapalli

Some chemotherapy drugs only affect developing follicles and the eggs inside them. Therefore, a woman may stop her menstrual cycle during treatment, but because she still has im­mature follicles in her ovarian reserve, she may start having her period again when treatment ends. However, other kinds of chemotherapy, especially alkylating agents, can also damage the immature follicles that are resting in the ovary. Once these follicles are destroyed, women cannot make new ones. Consequently, these therapies can cause early menopause in young women or even delayed puberty in girls. Further, in addition to damaging the follicles, radiation to the abdomen or reproductive organs can damage the uterus, which may make it difficult to carry a healthy pregnancy.

A man’s fertility depends on his ability to make healthy sperm. Cancer treatments, including chemotherapy, radiation, and surgery, can affect a man’s sperm and cause infertility. In fact, these treatments may affect not only the amount of sperm that a man can produce but also the quality of the sperm. In addition to having a low sperm count, having slow moving or abnormal sperm can affect a man’s fertility.

Discuss with your oncologist the possibility of infertility and ask about your fertility preservation options as early in the treatment planning process as possible.

What fertility preservation options are available?
For women who have gone through puberty, the established methods for fertility preservation are embryo and oocyte banking, or cryo­preservation. Both embryo and egg banking require women to take hor­monal injections to stimulate the ovaries to produce multiple mature eggs over the course of one to two weeks. These hormone injections may not be appro­priate for women with certain types of cancer, so it’s important to ask your doctor if this is an option for you. The process is closely monitored through blood tests and a series of pelvic ultra­sounds. When the follicles reach a certain size, an egg retrieval procedure is performed, often in a doctor’s office with minimal anesthesia. The mature eggs collected during the procedure can be frozen individually and stored for future use, or they can be fertilized with a partner’s or donor’s sperm to form embryos, which also can be frozen and stored to achieve a pregnancy in the future. Once the egg retrieval is completed, a woman can begin her cancer treatment.

If a female is too young or is not a candidate for egg or embryo bank­ing, she may consider ovarian tissue cryopreservation, an investigational procedure by which the outer layer of the ovary, which contains immature follicles, is surgically removed and then frozen and stored. This ovarian tissue can be thawed and transplanted back into the woman’s body to restore fertility, or individual ovarian follicles can be grown in a petri dish.

For women receiving abdominal or pelvic radiation, a minor surgical procedure called ovarian transposition can be performed to move the ovaries outside the field of radiation.

The best way to preserve a man’s fertility is to collect a semen sample prior to radiation or chemotherapy. In some cases, a surgical procedure is needed to collect sperm directly from the testes. Sperm can be frozen and used in the future for intrauterine insemination or in vitro fertilization. Even if a man’s sperm count is low or there are other concerns, banking sperm before starting treatment is a good back-up plan in case his fertility is affected by his cancer treatment.

Not all cancer treatments affect fer­tility the same way for everyone. It’s important to talk with your doctor about how your course of treatment might affect your fertility. If you’ve already started treatment, keep in mind that some of these fertility options may still be available even after cancer treatment. Additionally, there are many other ways to start a family, such as by using donor eggs, embryos, or sperm. Surrogacy or adoption may also be feasible options. Consider meeting with a reproductive endocrinologist who specializes in fertil­ity issues to help you navigate your many options for parenthood after cancer.

♦ ♦ ♦ ♦ ♦

Dr. Laxmi Kondapalli is an assistant professor in the Division of Reproductive Endocrinology and Infertility and director of the Oncofertility Program at the Univer­sity of Colorado in Denver, CO.

For more information on cancer and fertility, visit ARM.ColoradoWomensHealth.com, MyOncofertility.org, SaveMyFertility.org, and Livestrong.org/we-can-help/fertility-services.

This article was published in Coping® with Cancer magazine, March/April 2014.

8 Rules for Keeping Your Sanity
While Coping with Cancer

by Jane Loeb Rubin

Inspiration image

As a four-year primary peri­toneal cancer survivor and a fifteen-year breast cancer survivor, I am often asked how I’ve kept my head on straight when there seems to be so much fear associ­ated with cancer. Drawing from some great advice from my husband, David, as well as my physicians, nurses, rabbi, children, and coworkers, I have come up with eight basic rules for keeping sane while coping with cancer.

1 Make sure you’re comfortable with your medical team.
It’s up to you to make sure you’re getting the best care possible. Research what’s available as far as treatment centers, doctors, and clinical trials. Don’t be afraid to ask questions or to seek a second (or third) opinion. Once I felt reassured that I had the best possible care plan in place, I was able to put my worry away.

2 Simplify.
Dealing with cancer can be overwhelming and emotionally taxing, especially with all the decisions you’re facing. When emotions begin to run high, just simplify. Engage in activities that calm your nerves and provide reprieve from stress. For me, this usually involves taking a scenic walk, reading, playing with my grand­children, or watching a good movie.

3 Take things one step at a time.
Navigating cancer care is like driving the California freeway system. There are so many roads you can take that it’s easy to feel lost. It’s important to stay in the moment instead of getting bogged down trying to plan for every possible outcome.

My mantra is a signal to my brain to quit freaking out.

4 Develop a mantra to deal with fear and anxiety.
Mine is “Don’t look down.” Early in the diagnostic period when I was especially nervous about an upcoming CT scan, my hus­band suggested that I think about the things I was planning to do after the scan and that I, like a tightrope walker, “don’t look down.” Now when I have lab work and tests, I try to remember that the results are out of my hands, and even if they aren’t ideal, I have a great medical team assembled to care for me. Some people find meditation or prayer to be helpful, but for me, my mantra is a signal to my brain to quit freaking out, get the test over with, and move on.

5 Love yourself.
Cancer isn’t a pun­ishment for anything you have or have not done. Most of us try to live healthy lives, but sometimes we get sick. That’s life. Try not to beat yourself up about it. Treasure the things you like about yourself, and above all be kind to yourself. I love to treat myself to the occasional massage to relax my body and improve my state of mind.

6 Don’t take on cancer alone.
The company of a support group, friends, and family can be reassuring. When I was writing my memoir, I had to call upon my relatives and friends to help me remember the details of my journey that I had forgotten. Reaching out to my loved ones provided the added benefit of companionship when I needed it most.

7 Find your funny bone.
We’ve all heard the saying “Laughter is the best medicine.” This is especially true when things are looking grim. Each time I visit the infusion lab, I rate the nurses by how uncomfortable the needle stick is on a scale from 1 to 10. After a few appointments, the nurses picked up on my system, and they now look forward to hearing how they scored. We always end up laughing, no matter how much the needle pinched.

8 Do something!
I’ve found that the best way to feel empowered is to get out there and do something. Within weeks of my diagnosis, I compiled a bucket list. My first challenge was to learn photography. Surprisingly, I have become quite good and am now the designated photographer for family events. I also have always had a yearn­ing to travel, so in the past four years, my husband and I have traveled the world, from Hawaii to Israel and many places in between. Living your bucket list will make you feel happier and more fulfilled. But be warned; it is very addictive.

♦ ♦ ♦ ♦ ♦

Two-time cancer survivor Jane Rubin is director of neuroscience for Atlantic Health System in Summit, NJ, and author of Almost a Princess: My Life as a Two-Time Cancer Survivor. Learn more about Jane at AlmostAPrincess.com.

This article was published in Coping® with Cancer magazine, March/April 2014.

The Symptoms and Side Effects of
Multiple Myeloma

and What You Can Do about Them


Photo by Cancer Type

When you’re going through treatment for multiple myeloma, listen to your body. Keep a journal of how you feel physically and emotionally. Keeping notes can help you keep track of how you’re doing over time and of symp­toms or side effects that may come and go. This can help you work closely with your doctor to manage the side effects that you experience from mul­tiple myeloma or its treatment, and ensure that your questions are answered.

Pain
Pain can result from the myeloma itself or from nerve damage caused by the disease or its treatment. It can also occur after a bone marrow biopsy. Let your healthcare team know how you feel so they can suggest ways to relieve or reduce your pain.

Think of your pain in terms of a 10-point scale, with no pain having a score of 0 and extreme pain having a score of 9 or 10. You’ll also want to track the location of the pain, its fre­quency and duration, the type of pain it is (Is it burning or stabbing? Sharp or dull?), and what makes the pain change (Does medication relieve the pain?).

Some people get pain relief from complementary medical techniques such as Qi Gong or acupuncture. Talk with your doctor before considering this type of pain-relief strategy. You may also benefit from relaxation strategies, such as deep and slow breathing, meditation, or hypnosis. Ask your healthcare team for recommendations; many treatment facilities have these resources on site. If you’re feeling depressed about your pain, talk with an oncology social worker or an experienced psychologist.

Bone Health
Bone weakness is a common problem for people with mul­tiple myeloma. Regular physical fitness, including daily walks, yoga, or exercise that is more strenuous (if comfortable and approved by your doctor) will help to keep bones strong and help you feel less frail.

Because previously healthy cells can usually repair themselves after chemotherapy ends, many side effects of chemotherapy are temporary and can be managed.

Bisphosphonates, such as pamidro­nate (Aredia) and zoledronic acid (Zometa), are commonly used drugs that work to maintain bone strength by slowing the way multiple myeloma cells dissolve and weaken bones. Treatment with bisphosphonates helps to prevent further bone damage; however, bisphos­phonates have been found to cause potentially severe dental problems. It’s important to inform your dentist about your use of bisphosphonates and to have a dental exam before starting these drugs. Maintaining good oral health while using these drugs is also important. If a tooth or gum infection occurs, your doctor may want to stop bisphosphonate treatment.

Anemia
Myeloma and its treatment can lead to anemia, which means that your red blood cells aren’t carrying enough oxygen through your body. This makes you feel very tired. Other symptoms of anemia include shortness of breath, feeling your heart pound, feeling dizzy or faint, or having diffi­culty concentrating.

If you’re concerned about anemia, there are medications that can help, or sometimes a blood transfusion is recommended. Your healthcare team will routinely assess if you are experi­encing a low red blood cell count through blood tests.

Infections
People with multiple myeloma may experience very low white blood cell counts due to the dis­ease and its treatment, making them more susceptible to infections. Your healthcare team may advise you to stay away from crowds and people with colds or other contagious diseases. If an infection develops, it can be seri­ous and should be treated promptly.

Kidney Problems
Some people with multiple myeloma may develop kidney problems due to the disease, treatment for the disease, or a combination of both. The kidneys help regulate the body’s hydration and water balance and are responsible for getting rid of the body’s waste. When the kidneys can no longer do this, excess fluid can build up in tissues (edema) and you may notice swollen feet or ankles, or you may be short of breath if fluid builds in the lungs. If kidney problems are severe, you may need dialysis, which artificially removes waste and excess water from the blood.

A person with serious end-stage kidney problems may need a kidney transplant. This is a very challenging process for someone whose immune system is compromised from multiple myeloma. You and your doctor should discuss the potential benefits and the risks of a kidney transplant if this is warranted.

Too Much Calcium in the Blood
When calcium leaves the bones and enters the bloodstream due to multiple myeloma, you may experience many troublesome side effects. You may lose your appetite or feel nauseated, rest­less, or confused. A high calcium level can also make you very tired, weak, dehydrated, and thirsty. If you have a high level of calcium in your blood, you will be asked to drink a lot of fluids and take medications that lower calcium levels in your blood. These things can relieve your discomfort.

Amyloidosis
Some people with myeloma may develop amyloidosis, which is the collection of abnormal proteins in tissues of the body. For example, proteins can build up in the heart, caus­ing chest pain and swollen feet. There are drugs to treat amyloidosis, as well as supportive measures that may help.

Side Effects of Chemotherapy
Side effects from chemotherapy often result from damage to healthy cells. Some examples include damage to the cells in your mouth (resulting in mouth sores), your hair follicles (resulting in hair loss), and the cells in your gastro­intestinal tract (resulting in vomiting, diarrhea, and constipation). Because previously healthy cells can usually repair themselves after chemotherapy ends, many of these side effects are temporary and can be managed.

Every drug causes a unique set of side effects. Talk with your oncology nurse about the side effects you may experience based upon your treatment plan. If you are enrolled in a clinical trial, the research nurse will talk with you about side effects. Ask for infor­mation about the best way to manage potential problems even before they begin so you can feel prepared and avoid difficulties.

Side Effects of Stem Cell Transplant
There are several potential risks from a major procedure such as a stem cell transplant, but there are also many longer-term benefits. Talk with your doctor and nurse about what you should expect from the procedure, how to pre­pare for it, what recovery will be like, and what side effects to plan for.

♦ ♦ ♦ ♦ ♦

Reprinted with permission from Frankly Speaking About Cancer: Multiple Myeloma © 2013 Cancer Support Community. For more information, visit CancerSupportCommunity.org.

This article was published in Coping® with Cancer magazine, January/February 2014.

Commit to Quit

Make a Resolution to Stop Smoking for Good

by Danielle Peereboom, MPH, Jody Nicoloso, BA, and Frank Leone, MD, MS

Photo by Cancer Type

Many smokers who have been diagnosed with cancer continue to smoke, though they may not understand why. After all, they are well aware of the dangers of smoking and may have even experienced them first-hand. Is this the situation you’re finding yourself in? Has your family pleaded with you to quit, even given you incen­tives or made threats? Have you ever wondered why you don’t have the will­power to just stop already? The answer can be found by examining the addictive effect of nicotine on the brain.

Take notice of when you smoke, and make slight modifications to your routines surrounding those times.

Author of Article photo

Danielle Peereboom

Nicotine acts as an imposter “safety signal” to the basic survival area of the brain. As a result, the absence of nico­tine in the addicted brain translates to a threat to survival, which creates a compulsion to smoke. So even though you keep telling yourself to quit smok­ing, your addicted brain keeps telling you to pick up that cigarette. In the fight between logic and instinct in the brain, instinct usually wins.

The good news, however, is that there are effective ways to turn down the vol­ume on your brain’s instinct messages.

Author of Article photo

Jody Nicoloso

Talk to your doctor about nicotine replacement therapy and medication.
Most people with cancer who smoke at the time of their diagnosis attempt to quit without formal treatment, but studies show that only 3 to 5 percent of smokers can effectively quit cold turkey. Luckily, a variety of nicotine replacement options have been proven to be safe and effective in helping peo­ple gradually quit smoking, including over-the-counter cessation aids (gums, lozenges, patches) and prescription medications (inhalers, nasal sprays). Medication to reduce the desire to smoke is also available and can work in combination with nicotine replace­ment therapy. Talk to your doctor about which options might be best for you and whether you should combine therapies to maximize effectiveness.

Author of Article photo

Dr. Frank Leone

Get support from family and friends.
Your loved ones may not know how to best support you; they may fear that the things they say will make you feel ashamed rather than supported. Let them know what they can do to encourage you. Ask your relatives and friends who smoke not to smoke in front of you and not to give you cigarettes. You can get additional support online (SmokeFree.gov), at a class, or through your state’s Quitline (1-800-784-8669).

Examine your routines and identify triggers.
Our days are filled with sig­nals telling us how to act and respond in certain situations. The end of a meal can signal time for a smoke. Having a cup of coffee can be the cue to light up. Even just waking up in the morning can be a trigger if a morning smoke was part of your daily routine. Take notice of when you typically smoke, and make slight modifications to your routines surrounding those times. Hold the cigarette in the opposite hand, sit in a different spot on the patio when you smoke, or try keeping your cigarettes in different places from normal. You can even change the order of your rou­tines. This will help desensitize your brain to those triggers. Even small changes in routines can lead to big success in the quitting process.

Prepare, prepare, prepare.
Come up with a detailed action plan of how you will deal with triggering situations. Practice it over and over in your head, and don’t be afraid to seek the help of a counselor in planning and implement­ing your strategy. For example, place your cessation aid of choice in strategic locations so you can use it when you anticipate a trigger or promptly after a craving arises.

The first step to quitting smoking is to understand that quitting is a process, not a single pass-or-fail test. This means that quitting re­quires a plan that leaves room for both setbacks and the development of coping skills along the way. With the help of health profes­sionals, your support system, and effective medica­tion, you can kick the habit for good.

♦ ♦ ♦ ♦ ♦

Danielle Peereboom and Jody Nicoloso coordinate public health initiatives at the Comprehensive Smoking Treatment Program at the University of Pennsylvania in Phila­delphia, PA. Dr. Frank Leone is an associate professor of medicine and program director of the Comprehensive Smoking Treatment Program at the University of Pennsylvania.

This article was published in Coping® with Cancer magazine, January/February 2014.

Addressing Sexual Recovery after Prostate Surgery

by Victor Hola, RN

Wellness image

Most men undergoing surgery to remove their prostate will experience difficulty getting an erection for varying lengths of time after surgery. In order to restore sexual vitality, two main areas need to be addressed. The first is largely physical (but can be influenced by psychologi­cal factors) – regaining the ability to have and maintain an erection. The second can have both physical and psychological factors – recovering the desire for sexual activity, or sexual libido. The road to sexual recovery is not always an easy one, but with time, effort, and a little bit of patience, success is possible.

The Meds A man’s erections may not return for up to three years after prostatectomy, and in some cases, they may never return to their previous level of function­ing. However, this does not mean that erec­tions can’t be helped along. Oral medications such as Viagra, Levitra, Staxyn, and Cialis can be used to produce an erection or to enhance pleasure during sexual activity. Similarly, medications such as Edex and Caverject can be injected into the shaft of the penis with a tiny needle in order to facilitate an erection. Another option is a small suppository – about the size of a ball­point pen tip – that is placed into the penile urethra, which, like the injec­tion, can produce an erection within 15 minutes.

You may benefit from meeting with a sexual therapist or counselor to determine whether psychological reasons are causing erectile dysfunction and low libido.

Author of Article photo

Victor Hola

If you and your doctor decide that any of these medicines is appropriate for you, you will need to experiment in order to determine the right dosage. If the dosage isn’t strong enough, you may not achieve a full erection. On the other hand, if the dosage is too strong, you may experience side effects, such as low blood pressure, fainting, and painful erections.

The Pump If you have a history of cardiac conditions and are unable to try erectile medications, a vacuum erection pump is an option you can explore. The pump is a plastic tube that fits over the flaccid penis and creates a vacuum that brings blood into the penis, causing it to swell and become erect. Once erect, a rubber ring is placed at the base of the penis, acting as a dam to keep the penis full of blood and erect. This ring may be worn for up to 30 minutes, and can be left on during intercourse.

The Sex Drive No two men are alike in their level of libido. A man’s libido can be affected by both psycho­logical and physical factors. If you’re experiencing loss of sexual desire after prostatectomy, help first comes in the form of a comprehensive physi­cal by your doctor. Blood tests and physical assessments can reveal whether there is a physical cause to your low desire. Then, you may want to consider meeting with a sexual therapist or counselor to determine whether psychological factors are causing erectile dysfunction and low libido.

The best thing you can do to recover sexually after having a prostatectomy is to be open to trying new things. Eventually you will find what works best for you and your partner. After all, human sexuality is a beautiful part of life – a part of life that prostate can­cer survivors and their partners deserve to experience.

♦ ♦ ♦ ♦ ♦

Victor Hola is a registered nurse in the Department of Urology at the University of Michigan Cancer Center in Ann Arbor, MI. In addition, he is an AASECT-certified sexual counselor, as well as a certified sexual educator.

You can find a certified sexual counselor or therapist in your area at AASECT.org.

This article was published in Coping® with Cancer magazine, January/February 2014.

Know Your Options for Treating Colorectal Cancer


Photo by Cancer Type


(Photo by Burlingham / Shutterstock.com)

Treatment options and recommendations for colorectal cancer depend on several factors, includ­ing the type and stage of cancer, possible side effects, and your preferences and overall health. The following treatments are the standard of care for colorectal cancer. When making treatment plan decisions, you might also consider taking part in a clinical trial.

Surgery
Surgery is the removal of the tumor and surrounding tissue during an operation. This is the most common treatment for colorectal cancer and is often called surgical resection. Part of the healthy colon or rectum and nearby lymph nodes will also be removed.

Some people may be able to have laparoscopic colorectal cancer surgery. With this technique, several viewing scopes are passed into your abdomen while you are under anesthesia. The incisions are smaller and the recovery time is often shorter than with standard colon surgery. Laparoscopic surgery is as effective as conventional colon surgery in removing the cancer.

Chemoradiation therapy is often used in rectal cancer before surgery to avoid colostomy or reduce the chance that the cancer will recur.

Less often, a person with rectal cancer may need to have a colostomy. This is a surgical opening, or stoma, through which the colon is connected to the abdominal surface to provide a pathway for waste to exit the body; such waste is collected in a pouch worn by the individual. Sometimes, the colostomy is only temporary to allow the rectum to heal, but it may be permanent. With modern surgical techniques and the use of radiation therapy and chemotherapy before surgery when needed, most people treated for rectal cancer do not need a permanent colostomy.

Many people need to retrain their bowel after surgery, which may take some time and assistance. You should talk with your doctor if you do not re­gain good control of bowel function.

Radiation therapy
Radiation therapy is the use of high-energy X-rays to de­stroy cancer cells. It is commonly used for treating rectal cancer because this tumor tends to recur near where it originally started. A radiation therapy regimen usually consists of a specific number of treatments given over a set period. Radiation treatment is usually given five days a week for several weeks and may be given in the doctor’s office or at the hospital.

External-beam radiation therapy uses a machine to deliver X-rays to where the cancer is located. For some people, specialized radiation therapy techniques, such as intraoperative radiation therapy (a high, single dose of radiation therapy given during surgery) or brachytherapy (placing radioactive “seeds” inside the body), may help get rid of small areas of tumor that could not be removed during surgery. In one type of brachytherapy with a product called SIR-Spheres, tiny amounts of yttrium-90 (a radioactive substance) are injected into the liver to treat colorectal cancer that has spread to the liver when surgery is not an option. While limited information is available about how effective this approach is, some studies suggest that it may help slow the growth of cancer cells.

For rectal cancer, radiation therapy may be used before surgery to shrink the tumor so that it is easier to remove, or after surgery to destroy any remain­ing cancer cells, as both have worked to treat this disease. Chemotherapy is often given at the same time as radia­tion therapy (called chemoradiation therapy) to increase the effectiveness of the radiation therapy. Chemoradia­tion therapy is often used in rectal cancer before surgery to avoid colos­tomy or reduce the chance that the cancer will recur. One study found that radiation therapy plus chemother-apy before surgery worked better than the same radiation therapy and chemo­therapy given after surgery. The main benefits included a lower rate of the tumor coming back in the area where it started, fewer people who needed permanent colostomies, and fewer problems with scarring of the bowel in the area where the radiation therapy was given.

Chemotherapy
Chemotherapy is the use of drugs to kill cancer cells, usually by stopping the cancer cells’ ability to grow and divide. Systemic chemotherapy is delivered through the bloodstream to reach cancer cells throughout the body. A chemotherapy regimen usually con­sists of a specific number of cycles given over a set period. Chemotherapy for colorectal cancer is usually injected directly into a vein, although some chemotherapy can be given as a pill. You may receive one drug at a time or combinations of different drugs at the same time.

Chemotherapy may be given after surgery to eliminate any remaining cancer cells. For some people with rectal cancer, the doctor will give chemotherapy and radiation therapy before surgery to reduce the size of a rectal tumor and reduce the chance of cancer returning.

Systemic chemotherapy is delivered through the bloodstream to reach cancer cells throughout the body.

Currently, several drugs are approved by the U.S. Food and Drug Administra­tion to treat colorectal cancer in the United States. Your doctor may recom­mend one or more of them at different times during treatment. These drugs include fluorouracil (5-FU, Adrucil), capecitabine (Xeloda), irinotecan (Camptosar), oxaliplatin (Eloxatin), bevacizumab (Avastin), cetuximab (Erbitux), panitumumab (Vectibix), and ziv-aflibercept (Zaltrap).

The medications used to treat cancer are continually being evaluated. Talking with your doctor is often the best way to learn about the medications prescribed for you, their purpose, and their potential side effects or interactions with other medications.

Targeted Therapy
Targeted therapy is a treatment that targets the cancer’s specific genes, proteins, or the tissue environment that contributes to cancer growth and survival. This type of treat­ment blocks the growth and spread of cancer cells while limiting damage to normal cells.

Studies show that not all tumors have the same targets. To find the most effec­tive treatment, your doctor may run tests to identify the genes, proteins, and other factors in your tumor. As a result, doctors can better match each person with the most effective treatment when­ever possible. In addition, many research studies are taking place to find out more about specific molecular targets and new treatments directed at them. These drugs are becoming more important in the treatment of colorectal cancer.

Anti-Angiogenesis Therapy
Anti-angiogenesis therapy is a type of targeted therapy. It is focused on stopping angiogenesis, which is the process of making new blood vessels. Because a tumor needs the nutrients found in blood vessels to grow and spread, the goal of anti-angiogenesis therapies is to “starve” the tumor. Bevacizumab is a type of anti-angiogenesis therapy called a monoclonal antibody. When given with chemotherapy, bevacizumab increases the length of time people with advanced colorectal cancer live. In 2004, the FDA approved bevaci­zumab along with chemotherapy for the first-line treatment of people with advanced colorectal cancer. Studies have shown it is also effective as second-line therapy along with chemotherapy. Ziv-aflibercept is another type of anti-angiogenesis therapy that is used along with FOLFIRI chemo­therapy as a second-line treatment for metastatic colorectal cancer. In addition, the drug regorafenib (Stivarga) was approved in 2012 for people with metastatic colorectal cancer who have already received certain types of chemotherapy and other targeted therapies.

Epidermal Growth Factor Receptor Inhibitors
An EGFR inhibitor is another type of targeted therapy. Researchers have found that drugs that block EGFR may be effective in stopping or slowing the growth of colorectal cancer. Cetux­imab and panitumumab are monoclonal antibodies that block EGFR. Cetuximab is an antibody made from mouse cells that still has some of the mouse struc­ture. Panitumumab is made entirely from human proteins and is less likely to cause an allergic reaction than cetuximab.

Studies show that cetuximab and panitumumab do not work as well for tumors that have specific mutations to a gene called KRAS. The American Society of Clinical Oncology released a provisional clinical opinion recom­mending that everyone with metastatic colorectal cancer who may receive anti-EFGR therapy, such as cetuximab and panitumumab, have their tumors tested for KRAS gene mutations. If a tumor has a mutated form of the KRAS gene, ASCO recommends against the use of anti-EFGR antibody therapy. Furthermore, the FDA now recommends that both cetuximab and panitumumab only be given to people who have tumors with non-mutated, or wild type, KRAS genes.

Palliative Care
In addition to treat­ment to slow, stop, or eliminate the cancer, an important part of cancer care is relieving a person’s symptoms and side effects. This approach is called palliative or supportive care, and it includes supporting an individual with his or her physical, emotional, and social needs at any stage of illness. Palliative treatments vary widely and often include medication, nutri­tional changes, relaxation techniques, and other therapies. You may also re­ceive palliative treatments similar to those meant to eliminate the cancer, such as chemotherapy, surgery, and radiation therapy. Before treatment begins, talk with your healthcare team about the possible side effects of your specific treatment plan and your sup­portive care options. During and after treatment, be sure to tell your doctor or another healthcare team member if you are experiencing a problem so it is addressed as quickly as possible.

♦ ♦ ♦ ♦ ♦

Reprinted with permission from Cancer.Net © 2014 American Society of Clinical Oncology. All rights reserved.

This article was published in Coping® with Cancer magazine, March/April 2014.

Coping® does not endorse or recommend any particular treatment protocol for readers, and this article does not necessarily include information on all available treatments. Articles are written to enlighten and motivate readers to discuss the issues with their physicians. Coping believes readers should determine the best treatment protocol based on physicians’ recommendations and their own needs, assessments and desires.

Camp Kesem

Where Magic Happens


Knowledge image

Camp Kesem is by big kids for little kids whose parents have cancer. Anchored in a network of free summer camps, Camp Kesem provides a peer-based support system for children affected by a parent’s cancer. Led by the passionate efforts of college students across the country, Camp Kesem offers what these kids need most – support, courage, empathy, and fun – as they face realities no child should have to face.

More than three million kids in the United States live with a parent who has cancer, and Camp Kesem recognizes and embraces this often-overlooked population of children. Because they don’t appear sick, their needs often go unnoticed and they suffer quietly, which can lead to academic, social, emotional, and developmental problems.

Knowledge image

Founded at Stanford University in 2000, Camp Kesem has grown rapidly since its establishment. Existing in 27 states nationwide, Camp Kesem’s 54 college chapters will serve more than 3,500 children ages 6 through 16 this summer.

Camp Kesem’s summer camps provide a unique, compassionate envi­ronment where kids can just be kids. Throughout the academic year, campers and their families are invited to seasonal reunions where they can reconnect with their peers and receive additional support resources on a national and regional level.

Through Camp Kesem, college students and counselors-in-training vol­unteer their time to learning leadership skills and receive year-round training to ultimately organize and run their own camp. Additionally, Camp Kesem en­gages alumni, community leaders, and campers’ families through advisory boards, alumni associations, and its board of directors.

Knowledge image

“To me, Camp Kesem is a home away from home, and the people are like my family. Because we have all been through tough times, we can relate to each other on a whole other level, and we have created such unexplainable bonds,” says one camper. “Camp Kesem is a safe place to get away for a while and talk about all the things that have been bothering you, but it is also a place to just have fun and enjoy the week with such amazing people. Camp Kesem has changed my life. I honestly don’t know where I would be if I had never joined the Kesem family!”

♦ ♦ ♦ ♦ ♦

For more information on Camp Kesem, including camp schedules, locations, and applications, visit CampKesem.org. Find Camp Kesem on Facebook (facebook.com/CampKesem), and on Twitter and Instagram (@CampKesem).

This article was published in Coping® with Cancer magazine, March/April 2014.

Cancer Survivors to Celebrate Life on National Cancer Survivors Day – Sunday, June 1, 2014


Inspiration image

From family members to close friends, everyone knows someone whose life has been touched by cancer. On Sunday, June 1, 2014, thousands of people around the world will unite to observe the 27th annual National Cancer Survivors Day®. Hundreds of communities across the U.S. and abroad will hold celebrations on this day to honor cancer survivors and show that there is life after a cancer diagnosis – and it’s worth celebrating.

National Cancer Survivors Day is a cherished annual worldwide celebration of life. It is the one day each year that we pause to honor everyone who is living with a history of cancer – including America’s nearly 14 million cancer survivors. “A ‘survivor’ is anyone living with a history of cancer – from the moment of diagnosis through the remainder of life,” according to the National Cancer Survivors Day Foundation.

NCSD provides an opportunity for cancer survivors to connect with other survivors, celebrate milestones, and recognize the healthcare providers, family, and friends who have supported them along the way. It is a day for cancer survivors to stand together and show the world that life after a cancer diagnosis can be meaningful, productive, and even inspiring.

NCSD activities will be as diverse as the communities where the events are being held and will include parades, carnivals, walks, races, art exhibits, health fairs, inspirational programs, and more. There will be laughter and tears, shouts of joy and moments of quiet reflection, hope for the future and strength to endure today, and maybe even a little music and dancing.

The National Cancer Survivors Day Foundation, administrator for the celebration, is encouraging everyone to participate in their community’s event. To locate the one nearest you, check with your local cancer treatment center or hospital. Or you can host an event of your own. The NCSD website, ncsd.org, has everything you need to plan a successful NCSD celebration. “When most people hear the word ‘cancer,’ they automatically think the worst,” says Foundation spokesperson, Laura Shipp. “But the truth is that more people are living longer and better quality lives after cancer than ever before. National Cancer Survivors Day is an opportunity for these cancer survivors to come together and celebrate this new reality in cancer survivorship. There is life after cancer. And that’s something to celebrate.”

NCSD started in the United States in 1987 and is now celebrated worldwide in countries including Canada, Australia, India, South Africa, Greece, Saudi Arabia, Italy, and Malaysia, according to Shipp. The nonprofit National Cancer Survivors Day Foundation provides free guidance, education, and networking support to hundreds of hospitals, support groups, and other cancer-related organizations that host National Cancer Survivors Day events in their communities. The Foundation’s primary mission is to bring awareness to the issues of cancer survivorship in order to better the quality of life for cancer survivors. Cancer survivors may face physical, emotional, social, and financial challenges as a result of their cancer diagnosis and treatment. Many are confronted with limited access to specialists, a lack of information about promising new treatments, inadequate or no insurance, difficulty finding employment, and psychosocial struggles.

“To say that cancer is challenging is an understatement,” says Shipp. “But it is a challenge that millions of people – 14 million in the U.S. alone – are overcoming. Though life may not look the same after a cancer diagnosis, these survivors are showing us that life after cancer can be rewarding, exciting, and filled with joy.”

The National Cancer Survivors Day Foundation, along with the NCSD 2014 national sponsors Bristol-Myers Squibb and Coping with Cancer magazine, is encouraging a greater commitment to resolving quality of life issues for cancer survivors. “More resources, research, and increased public awareness are needed to improve the quality of life of cancer survivors,” says Shipp. “Because of advances in modern medicine, cancer survivors are now living much longer after diagnosis. However, long-term survivorship poses its own unique challenges. We need to do a better job of addressing the hardships survivors face beyond treatment.”

To find out more about National Cancer Survivors Day, visit ncsd.org.

Leading up to the event, the Foundation urges everyone – cancer survivors and supporters alike – to spread the message that there is life after cancer, and it's something to celebrate. The following are suggested posts for your social media sites.

On Facebook: You can live a fulfilling life after a cancer diagnosis. Just ask the millions of people who have survived it. Celebrate life on National Cancer Survivors Day - Sunday, June 1. facebook.com/CancerSurvivorsDay

On Twitter: You can live a fulfilling life after cancer. Just ask the millions of people who've survived it. Celebrate life! #NCSD2014 @SurvivorsDay

About the National Sponsors: The National Sponsors for National Cancer Survivors Day 2014 are: Bristol-Myers Squibb, bms.com, and Coping with Cancer, copingmag.com.

♦ ♦ ♦ ♦ ♦

Looking Your Best When You’ve
Lost Your Locks

Advice from Beauty Expert David Babaii


Knowledge image

At an early age, world-renowned celebrity hairstylist David Babaii encountered a deep passion and love for hairdressing. Quickly, his imaginative hair creations gained him worldwide notoriety, allow­ing him the opportunity to work within the world of haute couture with design­ers, fashion magazines, and the world’s top models. A Look Good Feel Better featured beauty expert, David’s passion for hairdressing has also led him to share some of his best advice for women coping with hair loss as a side effect of cancer treatment.

During chemotherapy, many women experience hair thinning and hair loss. What is your recommendation for the best way a woman can camouflage spots where her hair is thinning?
Since this is such a difficult time for women, both physically and mentally, I like to place more emphasis on some of their other assets. I might mention they play up their eyes or lips to draw attention away from what they are going through and seeing in a mirror. If they have a love for jewelry, scarves, or hats, I use this to help them create a new look that will make them feel beautiful and not put such an importance on the hair.

Many women opt to wear a wig during chemotherapy treatment. What are a few things women should look for when picking a ’do?
I love the scenes from Sex and the City when Samantha went through her chemo. She wore a different wig for each scene. The color, the cut, and the style didn’t matter; she was determined to look fab­ulous. This opened the door for many women to do the same and not settle for one style. I think women should experi­ment and try various styles, colors, and cuts. Feeling good about how you look is always good medicine.

Often during chemotherapy, women keep their hair shorter. What are some fun and easy ways to style short hair?
Short hair has so many benefits and makes its own style statement. Women can look fresh and beautiful with short hair. I always make my clients feel sexy and gorgeous by showing them various ways to wear their hair, along with the right styling products. My favorite way to wear short hair is naturally textured, almost as if you just woke up. To change your style, I recommend wearing hair accessories, such as headbands or a thin scarf, and letting some soft wisps of hair show through.

Wigs make it easy to change your hair color on a daily basis. What colors do you think look the best on brunettes, blondes, and redheads?
There are so many color choices when it comes to wigs today, but women on chemotherapy need to shy away from some cool tones and instead look toward shades that will brighten their skin tones. At times, chemo can rob a woman’s skin tone of its vibrancy; the right color wig can help correct that. Their bodies endure a great deal during these treat­ments, so any color that makes them feel or look better is the way to go when selecting a wig.

How do you recommend women keep their newly growing hair healthy after completing chemotherapy treatment?
It is important for them to have a good hair- and scalp-care routine. This starts with a gentle shampoo and conditioner, along with a leave-in treatment to properly treat the scalp and hair while maintaining the balance and condition. Next, they’ll need regular trims to cut off any split or dry ends and to help maintain their hairstyle.

Sometimes after chemotherapy, women’s hair grows back gray or a different color than they are used to. How do you suggest women use hair color to fix this problem?
Yes, this is very true. Plus straight hair often grows back curly, coarse, and thicker. This is certainly an adjustment for many women who have already had to endure many physical changes due to cancer treatments. If a woman would like to correct her hair color after treat­ments are over, she should first consult with her oncologist to make sure she is ready to have her hair colored. Then, as with any color consultation, her skin tone and eye color play an important role in deciding on a hair color, along with her lifestyle. I would also use an ammonia-free hair color since it will be gentler on the scalp and the hair.

♦ ♦ ♦ ♦ ♦

Reprinted with permission from LookGoodFeelBetter.org, copyright © The Personal Care Products Council Foundation.

This article was published in Coping® with Cancer magazine, March/April 2014.

7th Heaven Alum and Hodgkin Lymphoma Survivor Barry Watson

Reflects on More Than a Decade of Survivorship

by Jessica Webb Errickson

Celebrity Cancer Survivor


(Photos on this page courtesy of UP TV)

Barry Watson has enjoyed a long and successful television career, having starred opposite Christina Applegate in ABC’s Samantha Who? and playing a recurring role in the final season of the popular CW series Gossip Girl. He’s shown off his acting chops in movies of all genres as well, including Teaching Ms. Tingle, Boogeyman, and most recently, UP TV’s original movie Far From Home. But the role Barry is probably most known for is that of Matt Camden, the eldest of the Camden clan on the now-syndicated hit series 7th Heaven.

Barry landed the role that launched him into household-name territory in 1996, but by 2002, as his contract with the long-running family drama was near­ing its expiration, the 28-year-old actor was contemplating his next career move. He wouldn’t see it coming, but that same year, a diagnosis of Hodgkin lymphoma would force him to push his acting career aside in order to focus on his health. Now, after more than a decade of remission, Barry reflects on his can­cer journey and how it feels to have snagged the role of a lifetime – survivor.

Barry got the first hint that all was not well while visiting New York to promote his film Sorority Boys. “I just remember being so tired,” he recalls in an interview with Coping magazine. “I was kind of certain that something was going on with my body.”

A couple of months later, Barry discovered a lump in his neck, leading him to see a doctor to identify exactly what was causing his symptoms. He was soon diagnosed with stage IIB Hodgkin lymphoma.

"I was ready to do whatever I needed to do to get the cancer out of my body."

Celebrity Cancer Survivor


Without hesitation, he found an oncologist with an optimistic approach and dove headfirst into treatment, which consisted of chemotherapy every two weeks for six months. “I was ready to do whatever I needed to do to get the cancer out of my body,” Barry asserts.

As the chemotherapy took its physical toll, Barry kept his spirits high, drawing inspiration from a fellow cancer survivor he met at his first treatment.

“I was really nervous, and I was really scared, but I was sitting next to this guy who had the best attitude out of everybody else in the room. He was making me laugh, and he made me feel really relaxed,” Barry shares. “Every time I went in for treatment after that, as much as it was a drag and it sucked and it hurt, I just tried to have a really good attitude and, hopefully, express that attitude to other people around me.”

Though he wasn’t feeling up for taking on any acting roles, Barry kept busy by accepting a behind-the-scenes job as part of 7th Heaven’s writing staff. “I didn’t think I was going to feel like it – and I didn’t half the time,” Barry con­cedes, “but having that normalcy was really good for me.”

Barry maintained a positive attitude as he fought to get back to the life he knew before cancer, and just three months into treatment, his doctors told him that the chemo was working even better than anticipated. In fact, they could no longer see any signs of cancer. “That news really made the last three months of chemotherapy a lot easier,” he says.

Barry completed his last treatment in October 2002, and he has been cancer-free since. With more than a decade of survivorship under his belt, Barry’s sunny outlook on life is brighter than ever.

“I don’t worry about the little things so much anymore,” Barry says of his post-cancer life. “Especially now that I have kids – my kids have really changed everything for me.”

Having chosen not to bank his sperm before treatment, there was a point in Barry’s life when he didn’t know if having children would ever be in the cards for him. That is, until his oldest son, Oliver, came along, followed by Felix, and most recently, his daughter, Clover Clementyne.

“I try not to let the stupid little things take away from the beautiful things that I have going on in my life – [my part­ner] Natasha, my kids,” he continues. “I see life a little brighter than I used to. Every color is a little more vibrant.”

Looking back on his journey as a whole, Barry says he wouldn’t change a thing. “I wish I didn’t have to go through it,” he clarifies, “But there’s a big part of me that’s glad that I went through this experience because it’s made me who I am now, which is, hopefully, a better human being, a better dad, maybe even a better actor.”

♦ ♦ ♦ ♦ ♦

Beginning in April, you can catch Barry in a recur­ring role on the third season of the CW series Hart of Dixie, premiering Friday, March 21, 2014, at 9/8c.

This article was published in Coping® with Cancer magazine, March/April 2014.

A Playlist for Healing

by Dawn McDougal Miller, MME, MT-BC, FAMI

Wellness image

Music can be a wonderful sup­portive tool for people with cancer. In fact, many cancer survivors say that listening to music while they’re receiving chemotherapy or radiation therapy changes the entire feeling of the room from clinical and impersonal to comfortable, relaxing, and healing.

When working with cancer survivors, music therapists often use a concept called the iso principle. Using this principle, a therapist plays music that matches a person’s initial mental or physical state, then gradually changes the tempo and beat of the music to ease the person toward their desired emo­tional state. But you don’t have to be a music therapist to make use of the iso principle. If a music therapist isn’t avail­able at your cancer center, you can still create a healing environment with mu­sic by making your own iso playlists.

Fast-to-Slow Playlist
When you’re feeling stressed or anxious or experi­encing pain, you may not be able to listen to slow, relaxing music. So the first few songs on your fast-to-slow iso play­list should have strong, steady beats, with tempos of approximately 120 beats per minute. These should be “feel good” songs that you know well and enjoy – music that makes you want to dance.

Next, gradually slow things down by adding medium-tempo songs to the playlist. As you listen to these slightly slower songs, you may notice your breath­ing and thoughts beginning to slow down and your muscles starting to relax.

When listening to your fast-to-slow playlist, your body, mind, and spirit will engage with the fast, rhythmic music, and then gradually become more receptive to relaxation with the slow, soothing music.

Author of Article photo

Dawn McDougal Miller

Finally, add several relaxing, slow-tempo (50 – 70 beats per minute) songs to the playlist. As you listen to these songs, take deep breaths and feel the tension in your body melt away. When listening to your fast-to-slow playlist, your body, mind, and spirit will engage with the fast, familiar, rhythmic music, and then gradually become more re- ceptive to relaxation with the slow, soothing music.

Slow-to-Fast Playlist
If you’re ex­periencing fatigue and would like to have more energy, you can use the iso prin­ciple to create a slow-to-fast iso playlist. The process is similar to that of creating a fast-to-slow playlist, but in reverse. Begin the playlist with slow music to match your current, low-energy state. Then add songs that gradually increase in tempo and have stronger beats. This slow-to-fast iso playlist may help to energize you.

Mood-Elevating Playlist
A slow-to-fast tempo playlist can also be helpful in lifting your spirits if you’re feeling down. Start the playlist with slow, sad ballads that will give you a chance to express your feel­ings. (Sometimes we all need to have a good cry.) Then select songs with in­creasingly positive messages and upbeat tempos. Include songs that have a spe­cial meaning to you and help you feel supported.

Make Your Playlists in Advance
Ideally, you should make your playlists in advance so they’re ready for you to listen to anytime you need them. You may even want to ask a family member or friend who understands your music preferences to create an iso playlist for you. A typical iso playlist should last about 20 to 40 minutes. However, a lon­ger playlist lasting one or two hours may be helpful at times.

Background Music or Headphones?
In the treatment setting, if you want to be able to converse freely with your healthcare team, you can play your music through a device with a speaker. This way, the music becomes part of the healing environment in the room.

If you’re experiencing extreme stress, anxiety, fatigue, or pain, you may want to listen to music through headphones, which will allow the mu­sic to be your sole focus. For example, if you’re anxious about an upcoming medical procedure, crank up the vol­ume (to a comfortable level) and fully immerse yourself in the music instead of focusing on the anxiety-provoking procedure. As your anxiety decreases, lower the volume a bit and allow your­self to relax.

Music can give you a sense of peace, keep you company, and foster deep breathing and relaxation. Listening to iso playlists is a low-cost, low-tech complement to cancer treatment that can support you through your journey, with no negative side effects.

♦ ♦ ♦ ♦ ♦

Dawn McDougal Miller is a board-certified music therapist and the music therapy in­ternship director at Park Nicollet Health Services in Minneapolis, MN. During her 27 years as a music therapist, Dawn has created several music therapy positions in hospitals and hospice programs throughout the Twin Cities.

For more information about music therapy, visit the American Music Therapy Association web­site, MusicTherapy.org.

This article was published in Coping® with Cancer magazine, January/February 2014.

Misunderstanding of Palliative Care Prevents People from Getting the Care They Need


Photo by Cancer Type

Palliative care’s association with end of life has created an “identity problem” that means the majority of people facing a serious illness do not benefit from treat­ment of the physical and psychological symptoms that occur throughout their disease, according to an article co-authored by palliative care experts at Harvard Medical School, Massachusetts General Hospital, the American Cancer Society, and Johns Hopkins University. The authors of the article, which appears in the New England Journal of Medicine, say palliative care should be initiated at the same time as standard medical care for people with serious illnesses, not brought up only if treatment has failed.

“Palliative care should no longer be reserved exclusively for those who have exhausted options for life-prolonging therapies.”

The authors say for palliative care to be used appropriately, the fundamental differences between palliative care and hospice care must be recognized, a dis­tinction that is not well known. In fact, 7 in 10 Americans describe themselves as “not at all knowledgeable” about palliative care, and many healthcare professionals believe it is synonymous with end-of-life care. While both hospice care and palliative care are intended to relieve suffering, hospice care provides care for people in the last phases of an incurable disease so that they may live as fully and comfortably as possible. Palliative care focuses on helping peo­ple get relief from symptoms caused by serious illness and is appropriate at any age or disease stage.

Another barrier to palliative care is the fact that policymakers have been reluctant to devote resources to initia­tives perceived to be associated with death and dying. The authors point to lower levels of government funding for palliative care research compared to funding for other specialties.

“The practice and policy behind palliative care must be considered inde­pendently from end-of-life care,” write the authors. “Palliative care should no longer be reserved exclusively for those who have exhausted options for life-prolonging therapies.”

The authors add that implementing earlier palliative care would not only improve quality of life but would also reduce spending and help people with advanced cancer clarify their treatment preferences. Evidence shows that people who receive palliative care early on even have better outcomes.

♦ ♦ ♦ ♦ ♦

This article was published in Coping® with Cancer magazine, January/February 2014.

Biking Back

by Gail Presnell-Jones

Inspiration image

I can’t be the only person in the world who was already at what they thought was the lowest point in their life when their cancer diagnosis came along. Surely I’m not the only survivor who had been waylaid by life: a job loss, financial troubles, death, divorce, or any combination of the mud the cosmos sometimes slings at us. There must be other people out there who were lying in the fetal posi­tion at the bottom of a well of shock and despair, crying “This cannot be my life” when the bottom dropped out and they plummeted to a new low of lows. I can’t be the only person who fought cancer and will never say “Well, in the end, it was a gift.”

When I received my last Herceptin injection, after 12 months of fighting stage II breast cancer, I walked out of the oncologist’s office and promptly found myself right where I’d been a year earlier – depressed. It’s easy to clear your mind of other troubles and focus on fighting a disease that demands so much of your energy. But not very many people talk about what happens after. After you’re declared cancer-free but still face other staggering life chal­lenges – only now you get to add the possibility of a recurrence to the mish-mash of your day-to-day existence. No one seems to talk about the diffi­culty of dragging yourself out of bed every morning, wondering if it’s even worth the effort.

I will never write a glowing treatise about how I am grateful I had cancer.

Inspiration image

Gail Presnell-Jones

I sometimes had periods of hope. I read magazines for inspiration, watched documentaries (often in my jammies in the middle of the afternoon), and searched online for other people’s stories. But that only made me feel worse. So many survivors, upbeat and smiling, saying how, in the end, their cancer was a blessing.

But I hated my life. Even more since I now got to add “cancer survivor” to my personal list of descriptors: unem­ployed, unemployable, broke, broken, hopeless.

It scared me when I started to forget the dynamic woman I had been before my world imploded. It scared me so much that I started to write down mem­ories. The stories of my dreams and goals and the gorgeous life I had once worked so hard to create. Writing filled the long afternoons of boredom and the evil ether of dark nights – half-awake, half-asleep, where every agony was magnified and every blessing forgotten.

Six months later, I stopped scribbling and realized I held a novel in bloom. I connected the dots, filled in the blanks, and then sat down and read my life through, crying … but smiling too.

The next week, I borrowed a friend’s bike and took off for a little spin around the neighborhood. It was a hot and humid day, and the scenery was uninspiring, but there was a breeze in my newly sprouted dark curly hair. (It used to be long and wheat colored – a visual confirmation that I was not the woman I used to be.) But the breeze did feel good.

And so I biked. Almost every day, I’d take off for an hour, and then an hour and a half, and then two hours. My hair grew longer, my shoulders bronzed, and my legs got stronger. I wrote a second book and started a third.

On a whim, I contacted a local news­paper to see if they would be interested in a food column. They accepted, and paid me $40 for my first article. I got highlights in my inky hair and looked – just a little bit – like me again.

I will never write a glowing treatise about how I am grateful I had cancer. I will never see the demolition of my old life as one door closing so that a window could open. I miss the old, carefree me, the naïve woman who somehow still believed that bad things only happened to other people. She was a giver of charity and sympathy, not a receiver.

But I did learn that I love to write, and biking makes me feel like I can fly. And that, I suppose, is a gift.

♦ ♦ ♦ ♦ ♦

Gail Presnell-Jones is a breast cancer survivor living in Valrico, FL.

This article was published in Coping® with Cancer magazine, January/February 2014.

A Recipe for Preventing Weight Loss during Treatment


Wellness image

The foods you eat when you are sick are often the best tolerated when you’re going through cancer treatment.

Many people with cancer experi­ence a loss of appetite and a decrease in food intake, which can result in significant weight loss. Pre­venting weight loss is important to help your body heal and recover from the side effects of cancer therapy.

Chemotherapy and radiation therapy are used to destroy cancer cells, but they may also damage normal cells in the process. Rebuilding these normal cells requires increasing your caloric intake and building up stores of good protein.

Preventing weight loss can also help to combat muscle-wasting, weakness, and fatigue and improve immune func­tion. Maintaining (or, if necessary, gaining) weight during treatment gives your body energy.

Being knowledgeable about how your cancer and treatment affects your body will help you maintain your weight and keep up your energy while undergoing treatment.

Serving Up Weight-Loss Prevention Strategies

Keep a list of what foods have an altered taste, and avoid those foods while on treatment.
Try foods that you never cared for in the past; these could become your new favorites.
Avoid warm meats, like steak; instead try cold meat, like roast beef.
Avoid the smells of cooking, if possible.
Try new or different foods, like smoked meat or fish, pickled eggs, or different ethnic cuisines.
If food tastes overly sweet, try adding acidic ingredients such as ketchup, hot sauce, relish, or a squeeze of lemon or lime.
If food tastes metallic, try eating with a plastic fork or spoon.
If food has no taste, try adding sauces, condiments, or spices.
Eat small portions, more frequently. Graze throughout the day instead of eating three large meals.
Stock up on “lunchbox” foods, such as fruit cups, yogurt or pudding cups, peanut butter crackers, dried fruits, and chips. These small self-contained portions are a convenient way to add in needed calories.
Keep small servings of ice cream, frozen yogurt, and bonbons in the freezer.
Serve a small portion on a large plate; it looks more appetizing than a large portion and may seem less challenging to finish.
Avocados, potatoes, pasta, and breads provide much-needed fat and calories.
Comfort foods are the best. The foods you eat when you are sick are often the best tolerated. For example, soups, toast, and sandwiches.

Successful weight-loss prevention requires that you eat foods that are high in protein and fat. High-protein foods include eggs, cheese, whole milk, fish, meat, poultry, and beans. Adding nonfat dry milk to soups and sauces is a great way to add protein without adding volume and making you feel full. High-protein, high-calorie snacks, like pudding, milk­shakes, and fruit smoothies, and meal replacement drinks or bars are great for helping prevent weight loss.

Adding fat to your diet can be as simple as adding butter or oil to your food; each tablespoon is approximately 100 calories. Peanut butter and mayon­naise are also high in fat and should be used freely. Remember, the time to go on a diet is not while undergoing can­cer treatment.

In addition to loss of appetite, taste alteration is one of the most common and vexing problems that people with cancer experience. In some cases, it can lead to significant weight loss.

Taste changes are unique to the indi­vidual experiencing them. Some people may taste food as overly sweet, metal­lic, or bland. The smell of certain foods may cause nausea or diminish your ap­petite. Identifying which foods or odors cause you the most trouble is a good first step in managing this symptom. Being flexible and willing to try different foods during this period of altered taste sensations will also help you to maintain your weight.

Many people with taste alteration and loss of appetite find that their ap­petites are best in the morning and worst between 4 p.m. and 8 p.m. Plan your meals accordingly. Breakfast may be the best time to eat meat and other high-protein food; dinner may not be. But you may be able to add a light snack late in the evening.

Remember, weight loss, taste altera­tions, and loss of appetite are biological phenomena linked to cancer and its treatment. They are not indicators of willpower and the will to live. Being knowledgeable about how your cancer and treatment affects your body will help you maintain your weight and keep up your energy while undergoing treatment.

♦ ♦ ♦ ♦ ♦

Excerpted with permission from The Lahey Clinic Guide to Cooking Through Cancer: 100+ Recipes for Treatment and Recovery, copyright © 2012 by The Lahey Clinic Sophia Gordon Cancer Center.

This article was published in Coping® with Cancer magazine, January/February 2014.

Dealing with Difficult Emotions after a Cancer Diagnosis

by Laura S. Porter, PhD

Wellness image

Scheduling some pleasurable activities into your day can have a powerful positive effect on your mood.

Finding out that you have cancer and then facing the often long, arduous course of cancer treat­ments can leave you feeling tired, cranky, scared, helpless, frustrated, blue, or all of the above. Everyone is different; some people sail through the experience with only mild bouts of worry or sadness while others struggle all the way through. Most people, however, land somewhere in the middle. Wherever you are on the spectrum, you may find the following suggestions helpful for managing the emotional challenges of cancer.

Recognize that negative feelings are normal.
When you’re going through a difficult experience, there will be times when you feel less than cheerful. Hav­ing negative feelings doesn’t mean that you’re weak or pessimistic – it means that you are human. Some people worry that admitting they’re having negative feelings will derail their progress, think­ing that in order to fight cancer, they must always remain positive. While it’s true that a positive outlook can be help­ful when facing a serious illness, both negative and positive emotions are nor­mal and valid. Trying to avoid negative feelings, or criticizing yourself for hav­ing them, will likely make you feel worse in the end. Instead, try to honor those feelings and find a way to express them.

Confide in a loved one.
Survivors are sometimes reluctant to talk with their loved ones about their worries be­cause they don’t want to burden them. However, research shows that open communication is beneficial for both survivors and for their loved ones. It’s particularly helpful if your loved ones can listen to how you’re feeling without trying to reassure you or solve the problem (not always an easy task). Be direct and tell your loved ones what you need, and encourage them to share their concerns with you as well. When you’re honest about your feelings, you and your loved ones are better able to provide each other with support.

Author of Article photo

Dr. Laura Porter

Accept help.
When coping with an illness, many people find it difficult to accept help from others. If you’re used to being the caregiver, it can be difficult to find yourself on the receiving end. But when you allow others to help, you provide them with a valuable gift. Think of it this way: By receiving, you are also giving. So try to relax and enjoy the generosity of others.

Manage troublesome side effects.
Pain, fatigue, and sleep difficulties often go hand-in-hand with depression and other negative emotions. Talk with your doctor if you’re experiencing these or other troubling side effects. There may be medications that can help. Comple­mentary therapies such as yoga and meditation, as well as light exercise, may also provide relief.

Take a break from cancer.
Between your medical appointments and keeping up with your everyday responsibilities, it’s often hard to find time to do the things that you enjoy. Scheduling some pleasurable activities into your day can have a powerful positive effect on your mood. Think about the little things that give you pleasure; they may be as sim­ple as walking the dog, sitting on your porch and enjoying a cup of coffee, or watching a good movie. Try to immerse yourself in the activity and enjoy it to its fullest. You may even want to ask a friend or family member to join you so you can enjoy their company as well.

Keep your healthcare providers in the loop.
You may think that they’re too busy or that it’s not their job to talk with you about your feelings. On the contrary, your doctors and nurses are concerned about your physical and emotional health. They can provide valuable support and resources, but they can’t help you if they don’t know what you need. More important, if you’re experiencing severe psychologi­cal distress that’s interfering with your ability to take care of yourself, or if you’re having thoughts of suicide, it is critical that you talk to your doctor right away.

There are many ways to care for your emotional health. The important thing is to communicate with your healthcare providers and find the strate­gies that best help you cope with the emotional impact of cancer.

♦ ♦ ♦ ♦ ♦

Dr. Laura Porter is a clinical psychologist and associate professor of psychiatry and behavioral sciences at Duke University Medical Center in Durham, NC.

This article was published in Coping® with Cancer magazine, January/February 2014.

When Fear Pushes You, Push Back

4 Tips for Gaining Perspective on Life’s Greatest Hindrance from a Cancer-Surviving Marine


Inspiration image

Jay is one of three people to swim from Alcatraz Island to San Francisco with his hands and feet tied.

What if you could overcome your fears? What would you do, and how different would your life be?

“Most people have no idea what they’re capable of; I think they’re al­most trained by fear to not attempt the amazing things they dream of. But I’m living proof – if you can overcome fear, you can overcome almost anything,” says Jay Platt, whose feats include swim­ming across the Mississippi River while handcuffed, shackled, and blindfolded. Jay was living his dream as a U.S. Marine when a cancer syndrome called von Hippel Lindau (VHL) exploded like a bomb on his life. It caused tumors in his brain and on his spine, as well as kidney cancer and the loss of his left eye. “I was mad at the world, and maybe part of me was afraid of the fact that I would be considered a handicapped person,” says Jay.

After a personal journey of accep­tance, however, Jay set out to rebuild himself physically, mentally, and spiri­tually, and to challenge himself by setting demanding physical goals. De­spite being told that his future would be considerably dimmer than his past, he went on to accomplish feats that many world-class athletes wouldn’t even consider. Along with his record-breaking Mississippi River swim, he swam from Alcatraz Island to San Francisco, CA, with his hands and feet tied, and he hiked the 2,100-mile southbound Appalachian Trail.

When you realize it’s not all about you, the annoying voice that tells you to be afraid begins to shrivel and loses its poison.

Inspiration image

Jay Platt

Jay shares four strategies that have helped him overcome fear and anxiety in order to rebuild his body, mind, and spirit.

♦ Focus on the joys in life.
When you realize it’s not all about you, the annoy­ing voice that tells you to be afraid begins to shrivel and loses its poison. While still reeling from his diagnosis and its effects on his life, Jay heard the carefree laughter of a severely handicapped girl being pushed in her wheelchair by her mother. “‘Listen to the birds, Momma,’ I heard her say – she was just so happy to experience that simple pleasure,” Jay says. “That, more than anything, sent me on a posi­tive path.”

♦ Prepare spiritually.
Just as Jay trains physically for his feats, he finds it es­sential to work out spiritually in order to stand up to the fear and anxieties that life’s trials bring. To that end, he surrounds himself with positive mes­sages and positive people.

♦ Use setbacks as a motivator.
When something bad happens, one of the most common responses is fear – fear that it will happen again, fear that you’re less than you used to be, and just plain irrational fear. Jay always knew he’d be a Marine; when he was forced to retire early due to his health, he had to recalibrate his entire life. “One of my favorite quotes is ‘What are you doing now?’ It doesn’t matter what you used to be,” he says. Jay is always looking forward to achieving his next goal.

♦ Remember a greater good.
When he started experiencing complications from VHL, which first manifested in his left eye, Jay promised God that he’d devote his life to others if he got through the scare. He has kept that promise – his Appalachian Trail hike alone raised more than $100,000 for charity. “Staying true to a promise might be the most emotionally solid aid to overcoming fear,” Jay says.

♦ ♦ ♦ ♦ ♦

Jay Platt is the subject of the documentary Living Unstoppable (LivingUnstoppable.com). The proceeds from his adventures and sales of his documentary benefit non­profit organizations, including the VHL Alliance.

This article was published in Coping® with Cancer magazine, January/February 2014.

Managing Incontinence for Men with Cancer


Prostate Cancer Image

If you have problems with incontinence, let your doctors know. You might feel embarrassed talking about this, but remember this is a common problem.

When you lose control of your urine or have leaking or drib­bling, it’s called urinary incontinence. A lot of men have incontinence after treatment for prostate cancer, but it can happen after being treated for other cancers too. If you have this problem, you are not alone. Urinary incontinence might only last a short time. In time, the muscles that control the passing of urine may get strong enough to control urination again. But incontinence can also be a long-term side effect of cancer treatment. Be sure to talk to your doctor if you are having trouble controlling your urine. There are ways to help.

Sometimes incontinence is caused by more than one problem. Your doctor will ask you questions and order tests to learn what’s causing your incontinence. Knowing your type of incontinence will help you and your doctor find the best way to manage it.

Types of Incontinence
The three most common types of incontinence are:

♦ Stress incontinence
This is the most common type of incontinence after pros­tate surgery. It happens when the muscle that squeezes the urethra to keep urine in the bladder is weak or damaged, or the nerves that help the muscle work have been damaged. (The urethra is the tube that carries urine from the bladder out of the penis. The muscle that squeezes to close it is called the urethral sphincter.)

Stress incontinence may cause you to leak urine when you cough, laugh, sneeze, lift heavy objects, or exercise. You may sleep through the night without having to get up to go to the bathroom, but leak when you get up in the morn­ing. Going to the bathroom more often is a way to handle stress incontinence.

♦ Overflow incontinence
When the bladder does not empty well and the amount of urine made is more than it can hold, it’s called overflow inconti­nence. Signs of overflow incontinence may be getting up often during the night to go to the bathroom, taking a long time to urinate, or having a weak, drib­bling stream with little force.

You may pass small amounts of urine but not feel empty. Or you may feel like you have to go to the bathroom but can­not. It may cause you to leak urine throughout the day. Overflow inconti­nence is usually caused by a blockage or narrowing caused by scar tissue. It also may happen when the bladder muscle cannot squeeze well enough to get all the urine out.

Incontinence products, such as pads worn under your clothing, are available to help keep you active and comfortable.

♦ Urge incontinence
Urge incontinence may be called overactive bladder. It’s when the bladder muscle contracts too often, usually suddenly and without warning, and you cannot control it. In this type of incontinence, even a small amount of urine in the bladder can trig­ger a strong need to pass urine. Because you cannot hold a normal amount of urine, you go to the bathroom a lot and may wet yourself if you don’t get there right away. You might feel as if you have a weak bladder, or that liquids go right through you. You might even wet the bed at night. This may be caused by a prostate infection or irritation from radiation therapy.

Treatment for Incontinence
If you have problems with incontinence, let your doctors know. You might feel em­barrassed talking about this, but remember this is a common problem. Your treat­ment will depend on the type and cause of the incontinence and how bad it is.

Doctors who treat men with cancer, especially those who treat prostate can­cer, should know about incontinence and be able to suggest ways to help, such as:

♦ Kegel exercises to help strengthen your bladder muscles. These exercises involve tensing and relaxing certain pelvic muscles. Not all doctors agree about their usefulness or the best way to do them, so ask your doctor about doing Kegels before you try them.

♦ Catheters to collect urine may help. One option is a rubber sheath called a condom catheter that can be put over the penis to collect urine in a bag. For some types of incontinence, self-catheterization may be an option. To do this, you put a thin tube into your urethra to drain and empty the bladder at regular times. Most men can learn this safe and usually painless technique.

♦ Compression (pressure) devices can be placed on the penis for short periods of time to help keep urine from coming out.

♦ Medicines to help the muscles of the bladder and the muscles that control urine flow. Most of these medicines affect either the muscles or the nerves that control them. These medicines work best for urge incontinence.

Surgery may be used to correct long-term incontinence. Blockages may be removed. Material such as collagen may be injected to tighten the muscle that controls urine flow. If incontinence is bad and not getting better, an artificial muscle controlled by a scrotal pump can be implanted to squeeze the urethra, or a small device called a urethral sling may be implanted to press the urethra against the pubic bone. Ask your doc­tor if these treatments might help you.

♦ Incontinence products, such as pads worn under your clothing, are available to help keep you active and comfortable. Adult briefs and undergarments are bulkier than pads but provide more pro­tection. Bed pads or absorbent mattress covers can also be used to protect the bed linens and mattress.

When choosing incontinence prod­ucts, keep in mind the following checklist. Some of these questions may not be important to you, or you may have others to add.

  • How much does the product hold or absorb? How long will it protect me?
  • Can it be seen under my clothing?
  • Is it disposable? Reusable?
  • How does it feel when I move or sit down?
  • Which stores near me carry the prod­ucts? Are they easy to get?
  • How much will it cost? Does my insurance help pay for these products?

Even if your incontinence cannot be completely stopped, it can still be helped. You can learn to manage and live with it so you can do the things you want and need to do.

More Help
You can also follow some simple precautions that may make incon­tinence less of a problem. For example:

Empty your bladder before bedtime or before strenuous activity.
Avoid drinking too much fluid, particu­larly drinks with caffeine or alcohol and citrus juices, which can irritate the blad­der and make you have to go more often.
Because fat in the abdomen can push on the bladder, losing weight sometimes helps improve bladder control.
Quit smoking to reduce coughing and bladder irritation caused by tobacco use.
Talk to your doctor about all medi­cines, vitamins, herbs, and supplements you’re taking. Some may affect urine control.

Fear, anxiety, and anger are com­mon feelings for people dealing with incontinence. Fear of having an acci­dent may keep you from doing the things you enjoy most – taking your grandchild to the park, going to the movies, or playing a round of golf. You may feel isolated and embarrassed. You may even avoid sex because you are afraid of leakage.

Incontinence is more than a physical problem. It can disrupt your quality of life if it’s not managed well. There is no one right way to cope with incontinence. The challenge is to find what works for you so you can return to a normal daily life. Talk with your doctor about the best ways to manage your incontinence. Get the help you need.

♦ ♦ ♦ ♦ ♦

You may find it helpful to talk with other men who are dealing with incontinence. Ask your doctor or nurse, call the American Cancer Society at (800) 227-2345, or search for resources on the ACS website, cancer.org., to see if any support groups meet in your area. You might also find other men to talk with online on ACS’s Cancer Survivors Network at csn.cancer.org.

Reprinted by the permission of the American Cancer Society, Inc., from cancer.org. All rights reserved.

This article was published in Coping® with Cancer magazine, January/February 2014.

Annual Report to the Nation on the Status of Cancer Shows a Decrease in Overall Cancer Deaths


Photo by Cancer Type

The Annual Report to the Nation on the Status of Cancer has shown that death rates for lung cancer, which accounts for more than one in four cancer deaths, are dropping at a faster pace than in previous years. The report was coauthored by researchers from the National Cancer Institute, the American Cancer Society, the Centers for Disease Control and Prevention, and the North American Association of Central Cancer Registries.

The larger drop in lung cancer deaths is likely the result of decreased cigarette smoking over many years, and is now being reflected in incidence rates and mortality trends. The lung cancer death rate decline, as well as declines in colorectal, breast, and prostate cancer death rates, has also helped drive de­creases in death rates for all cancer types combined. The decreased death rates for these four cancers accounted for more than two-thirds of the overall reduction in cancer death rates from 2001 through 2010. However, the Re­port, published online in the journal Cancer, showed that, in this 10-year period, death rates increased for some cancers, including cancers of the liver and pancreas, cancers of the uterus in women, and melanoma of the skin and cancers of the soft tissue in men.

“More and more Americans are win­ning the battle against cancer and are living long, healthy, and productive lives.”

“Cancer rates are edging down for both new cases and for deaths, which is definitely good news,” notes NAACCR director Betsy Kohler. “But there are still too many cancer types that require a rededication of effort to help get those rates reversed so that we’re showing real progress for all forms of cancer.”

The special feature of this year’s Report highlights the prevalence of other disease conditions in people with cancer over 65 years of age, as well as how these conditions affect survival. Studying comorbid conditions (two or more med­ical conditions occurring at the same time in one individual) is especially important because cancer is primarily a disease of aging, and the prevalence of comorbidi­ties also increases with age. The Report shows that one-third of people in this study population have comorbidities (with a higher frequency of comorbidi­ties in people with lung or colorectal cancer) and that survival is influenced by the presence of other medical conditions as well as the type of cancer, stage at diagnosis, and a person’s age.

“More and more Americans are win­ning the battle against cancer and are living long, healthy, and productive lives,” says CDC director Tom Frieden, MD. “However, cancer patients with underlying health conditions, such as diabetes, have special challenges. It’s critical for healthcare providers to have the full picture of their patients’ health so they can provide the best treatment possible for the patient overall, and for their cancer.”

♦ ♦ ♦ ♦ ♦

This article was published in Coping® with Cancer magazine, January/February 2014.

Art Washes Away the Dust of Everyday Life

by Emily-Kate Niskey

Inspiration image

Emily-Kate drew this self-portrait while she was undergoing breast cancer treatment.

When my breast cancer journey led me to a bilateral mastec­tomy and reconstruction, I knew recovery would be difficult. But I thought to myself, “I can handle it; I have a high threshold for pain. And emotionally, I’ll be fine. No big deal. I wanted new boobs anyway!” However, after the first few days at home, I was overcome with waves of emotional and physical pain. When my big sister asked how I was doing, I told her that I was just sleep deprived. Seeing right through my non­chalant front, she told me that it was OK to be upset, that I needed to let it out. So I started doing what I’ve always done when things are bothering me – I started drawing.

Pablo Picasso once said, “Art washes away from the soul the dust of everyday life.” For me, this quote rings true. Art is an escape that takes me away from my present, my past, and my future. When I draw, I don’t think about breast can­cer; I simply live in the moment. Drawing has helped me express my feelings and push through the pain.

Inspiration image

Emily-Kate Niskey

With my first post-cancer drawing, a sad version of myself with a pained look on my face and holes in my body forming the shape of a heart where my breasts once were, I began sobbing as my pencil flew frantically across the paper. After that, every time I was feel­ing physical or emotional pain, I would pull out my pencils and draw. Not only was this great emotional therapy for me, but I soon realized that I was also exercising my arms and fingers. (And it was a lot more rewarding than walking my fingers up and down a wall as my doctor had suggested.)

The pain and discomfort I experi­enced during my breast cancer journey resulted in many sleepless nights spent filling the pages of my sketchbooks. Any time I had to go to the hospital, I made sure the first things I packed were my sketchbook and pencils. During longer hospital stays, doctors, nurses, and orderlies would check in to see my latest drawing.

Drawing is what helped me get through breast cancer. If you’re struggling with pain, sadness, or worry during your can­cer journey, find an outlet that washes away the dust of your everyday life, something that takes you away from it all. Whether you draw a picture, make a collage, or sing at the top of your lungs, just do something that makes you happy.

♦ ♦ ♦ ♦ ♦

Emily-Kate Niskey is a breast cancer survivor living in Las Vegas, NV. She is working on publishing a book of her drawings and thoughts from the sketch­books she filled during her breast cancer journey. You can check out Emily-Kate’s blog at MyVigorLifestyle.com/blog.

This article was published in Coping® with Cancer magazine, January/February 2014.

ASCO’s Latest “Top Five” List Details Cancer Tests and Treatments That Are Routinely Performed Despite Lack of Evidence


The American Society of Clinical Oncology has issued its second “Top Five” list of opportunities to improve the quality and value of cancer care. Published in the Journal of Clinical Oncology, the list was released as part of the ABIM Foundation’s Choosing Wisely campaign to encourage conver­sations between physicians and cancer survivors and is aimed at curbing the use of certain tests and procedures that are not supported by clinical research. The “Top Five” list includes the fol­lowing recommendations:

1 Don’t give a person starting on a chemotherapy regimen that has a low or moderate risk of causing nausea and vomiting antiemetic drugs intended for use with a regimen that has a high risk for this effect.

Different chemotherapy treatments produce side effects of variable sever­ity, including nausea and vomiting, and many medications have been developed to help control these side effects. When successful, these medications can help people avoid hospital visits, improve quality of life, and lead to fewer changes in the chemotherapy regimen.

In recent years, new drugs have been introduced to help manage the most severe and persistent cases of nausea and vomiting that result from certain chemotherapy regimens. ASCO recom­mends the use of these drugs be reserved only for people taking chemotherapy that has a high potential to produce severe or persistent nausea and vomit­ing, as they are very expensive and not without their own side effects. For people receiving chemotherapy that is less likely to cause nausea and vomit­ing, there are other effective antiemetic drugs available at a lower cost.

2 Don’t use combination chemo­therapy instead of single-drug chemotherapy when treating an individual for metastatic breast cancer unless that person needs urgent symptom relief.

While combination chemotherapy (chemotherapy with multiple drugs) has been shown to slow tumor growth in people with metastatic breast cancer, it has not been proven to improve sur­vival over single-drug chemotherapy, and it often produces more frequent and severe side effects, worsening a person’s quality of life. Therefore, as a general rule, ASCO recommends giving chemotherapy drugs one at a time in sequence, which may improve a person’s quality of life and does not typically compromise overall survival. Combination therapy may, however, be useful and worthwhile in situations where the cancer burden must be reduced quickly because it is accompanied by significant symptoms, such as pain and discomfort, or is immedi­ately life threatening.

3 Avoid using advanced imaging technologies – PET, CT, and radionuclide bone scans – to monitor for a cancer recurrence in people who have finished initial treat­ment and have no signs or symptoms of cancer.

Evidence shows that using PET or PET-CT to monitor for cancer recur­rence in individuals who have completed treatment and have no signs of disease does not improve outcomes or survival. These expensive tools can often lead to false positive results, which can cause a person to have additional unnecessary or invasive procedures or treatments or be exposed to additional radiation.

4 Don’t perform PSA testing for prostate cancer in men with no symptoms of the disease when they are expected to live less than 10 years.

Men with medical conditions or other chronic diseases that may limit their life expectancy to less than 10 years are unlikely to benefit from PSA screening. Studies have shown that in this population, PSA screening does not reduce the risk of dying from prostate cancer or of any cause. Furthermore, such testing could lead to unnecessary harm, including complications from unnecessary biopsy or treatment for cancers that may be slow-growing and not ultimately life threatening. How­ever, for men with a life expectancy of greater than 10 years, ASCO has previously recommended that physi­cians discuss with these men whether PSA testing for prostate cancer screen­ing is appropriate.

5 Don’t use a targeted therapy intended for use against a spe­cific genetic abnormality unless a person’s tumor cells have a specific biomarker that predicts a favorable response to the targeted therapy.

Targeted therapy can significantly benefit people with cancer because it can target specific pathways that can­cer cells use to grow and spread, while causing little or no harm to healthy cells. The individuals who are most likely to benefit from targeted therapy are those who have a specific biomarker in their tumor cells that indicates the presence or absence of a specific ab­normality that makes the tumor cells susceptible to the targeted agent.

Compared to chemotherapy, the cost of targeted therapy is generally higher, as these treatments are newer, more expensive to produce, and under patent protection. In addition, like all anticancer therapies, there are risks to using targeted agents when there is no evidence to support their use because of the potential for serious side effects or reduced efficacy compared with other treatment options.

♦ ♦ ♦ ♦ ♦

For more information on ASCO’s “Top Five” list and the Choosing Wisely campaign, visit asco.org/topfive.

This article was published in Coping® with Cancer magazine, January/February 2014.

Breast Cancer & Your Genes

What Women Need to Know about Genetic Testing for Hereditary Breast Cancer

by Kimberly I. Muse and Jennifer K. Litton, MD

Breast Cancer image

Genetic test results can affect the entire family.

Breast cancer affects approximately 232,340 women per year. Most breast cancers have various contributing factors, such as age, reproductive and menstrual history, certain changes found in the breast tissue, hormonal factors, and family history. However, about 5 to 10 percent of breast cancer cases are hereditary.

What causes hereditary cancer?
It’s all in the genes! Genes are in every cell of our body. They come in pairs – one from mom, one from dad. BRCA1 and BRCA2 genes are responsible for the majority of inherited breast cancer cases. If one of these genes has an in­herited change or mutation, it can cause an increased risk of breast cancer or other cancers. Common characteristics of hereditary breast cancer can include cancer diagnosed at age 50 or younger, multiple relatives diagnosed with simi­lar types of cancer, individuals with two primary cancers (such as breast and ovarian cancer), male breast can­cer, and Ashkenazi Jewish (Central/ Eastern European) ancestry.

Genetic causes of breast cancer can be inherited from either the maternal or the paternal side of the family. Therefore, family history is a very important tool used to determine those individuals who may possess a genetic cause of cancer.

How can I find out about my family’s history of cancer?
The simplest way to get information about your family’s history of cancer is to talk to your relatives about their health. Family gatherings are a good time to discuss your family’s health history. Obtaining medical records or death certificates for deceased family members can provide additional family history information.

Author of Article photo

Kimberly Muse

Some family members may be hesi­tant to share personal information. It may help to explain why you are gathering this information; however, some rela­tives still may choose to keep their health information confidential. You may have some family members you do not know or have lost touch with. This is relatively common, so try not to get discouraged. Even limited information is helpful. A little information is better than no information at all.

I’ve gathered my family history. What should I do next?
To have your family history evaluated, you may consider genetic counseling. A genetic counselor is a healthcare professional trained in interpreting family and medi­cal histories to assess the chance that you or your family could have a heredi­tary condition that causes a higher risk for cancer. He or she will help you understand your own risk and identify the most appropriate genetic testing for you. Although the most common genes associated with hereditary breast cancer are the BRCA1 and BRCA2 genes, other genes may cause hereditary breast cancer and can be associated with other cancer risks. If your cancer is found to have a genetic cause, you are at increased risk for additional cancers.

Author of Article photo

Dr. Jennifer Litton

Genetic test results can affect the entire family. Other family members may decide to be tested to determine if they have the gene mutation too. Indi­viduals and families with a history of hereditary cancer have several medical choices, including increased screening and surveillance and preventive surger­ies to reduce the chances of cancer. If a genetic cause of cancer is not identified but there is still a significant history of cancer in your family, at-risk family members still have options for increased screening and prevention.

Whether you’ve recently been diag­nosed with breast cancer or you’re a long-term breast cancer survivor, genetic counseling and genetic testing may be right for you. If you think you have a hereditary cancer, speak with your fam­ily members to gather family history information. Meet with a genetic coun­selor or other healthcare provider to have your family history evaluated. Prepare to discuss the benefits and limitations of genetic testing and the implications for your family members. It is never too late to become proactive against cancer in your family.

♦ ♦ ♦ ♦ ♦

Kimberly Muse is a genetic counselor in the Department of Breast Medical Oncology at the University of Texas MD Anderson Can­cer Center in Houston, TX. She works with Dr. Jennifer Litton, assistant professor in the Department of Breast Medical Oncol­ogy, in the High Risk Genetics Clinic and the Clinical Cancer Genetics Program.

This article was published in Coping® with Cancer magazine, January/February 2014.

Get through Cancer the “Write Way”

by Judith Kelman

Wellness image

Cancer is complicated. Every survivor, every disease, every outcome is unique. The same holds true for coping strategies – you have to find what works best for you. There is no single right way to cope with cancer. However, the “write way” is worth exploring.

Writing has been shown to reduce stress, increase feelings of well-being, and enhance self-esteem. Studies have found that people who write about tough experiences feel more in con­trol, more confident, and better able to move on. This is true for people with a lifelong love of writing, as well as for those who are filled with dread at the prospect of writ­ing down their innermost thoughts.

Writing doesn’t have to be difficult. I’ve had people regale me for hours with enchanting stories and then declare, “I can’t write.” You may be thinking the same thing. But you can write. You already have the words, the ideas, and the experiences. The only thing left is to figure out how to draw them out of your mind and put them to paper (or computer). It’s simpler than it sounds. You just need to build a writing habit. Here are a few ways to get started:

♦ Keep a journal. Write in it every day, even if it’s just a few words or for just a few minutes. By looking back at these entries, you can track your progress through treatment and beyond and appreciate how far you’ve come and how much you’ve learned along the way.

By looking back at your journal entries, you can appreciate how far you’ve come and how much you’ve learned along the way.

Author of Article photo

Judith Kelman

♦ Write “Morning Pages.” Julia Cameron, author of The Artist’s Way, encourages people to fill three pages with whatever pops into their mind first thing in the morning, before they’re fully awake and under more conscious (and self-conscious) control. Try it.

♦ Write a letter to your cancer. Say anything you wish. Anything.

♦ Write to stay in touch. Keeping up with friends and family can be tax­ing, especially when you’re busy or stressed. You may find it less tiresome to update your supporters through email or social media, or even by starting a blog. A blog enables you to share what you’ve learned with people all over the world; many survivors find comfort, inspiration, and enlightenment through the blogs they follow. If you’d like to give blogging a try, you can find many tools online to help you get started.

♦ Practice prompt writing. A prompt is anything that induces writing – a question, a suggestion, an image, an object. Search online for “writing prompts” and you’ll find an endless selection. Some classics include “Write the story of your name,” “Write about your childhood kitchen,” and “If you could be anybody, who would you be and why?” To take the pressure out of prompt writing, remember that there are no wrong answers. Limit your writing to four or five minutes, and don’t worry about grammar or punc­tuation. Just write.

Once you’re more comfortable with writing, you can branch out in any way you choose. Try your hand at writing a poem or a screenplay. Start that novel you’ve had trapped in your head. Pen letters to people you love. Or simply continue writing in the notebook you keep on your bedside table, inscribing thoughts to be read only by you.

Through writing, you may discover a talent you didn’t know you had. But, more important, you will find your voice and learn a new way of express­ing yourself. Give it a try. The “write way” of coping with cancer might be just right for you.

♦ ♦ ♦ ♦ ♦

Judith Kelman is an award-winning author and founder and team leader of Visible Ink, a therapeutic writing pro­gram for cancer survivors at Memorial Sloan Kettering Cancer Center in New York, NY. Learn more about Visible Ink at mskcc.org/VisibleInk.

This article was published in Coping® with Cancer magazine, January/February 2014.

I Live on the Edge

by Doris Zughoul

 
Inspiration image

I live on the edge.
Not in some risky, romantic sort of way,
not like a sky diver or a race car driver.
Not even like a mountain climber.
Cancer puts me on the edge,
for I am a survivor.
I know the reality of life and death.
I live on the edge.
It’s really not so bad.
So many live
without really living at all.
But I look around
at miniscule moments of meaning.
A smile, a kind word,
shining summer sunlight,
lingering lilac fragrance.
Powerful, adrenaline-pumping
spontaneous opportunities.
I live on the edge.

♦ ♦ ♦ ♦ ♦

Doris Zughoul is a stage IIIA breast cancer survivor living in Chicago, IL.

This article was published in Coping® with Cancer magazine, January/February 2014.

Living with Diabetes and Cancer

by by Sonali N. Thosani, MD, and Victor R. Lavis, MD

Knowledge image

Nearly 26 million people in the United States are living with diabetes. Of those 26 million people, 7 million don’t know they have it. An even greater number, 79 million people have a condition called pre-diabetes, which means they are at a very high risk of developing diabetes.

The Basics of Diabetes
Blood glucose, or blood sugar, is what pro­vides your body with energy. Your body gets glucose from the foods you eat. You need an adequate amount of glucose in your blood to stay healthy, but if too much glucose is present, your body releases insulin, a hormone produced by the pancreas, to regulate glucose levels in the blood. If your blood glucose level stays too high for too long, your body can lose the ability to deliver insulin effectively. This puts you at risk for developing diabetes.

Diabetes in People with Cancer
For a person with diabetes, a cancer diag­nosis and certain cancer treatments can affect diabetes control. In addition, it’s possible for a person diagnosed with cancer who did not previously have diabetes to develop secondary diabetes, a condition caused by elevated blood glucose due to cancer treatments. You are at higher risk of developing secondary diabetes if you are undergoing chemotherapy treatment, have had your pancreas removed, are using a feeding tube, or have taken high dosages of steroids. Other factors can contribute to high blood glucose as well, includ­ing the cancer itself, uncontrolled pain, decreased physical activity, and physi­cal or emotional stress.

Sometimes a person who did not have diabetes prior to their cancer diagnosis will develop secondary diabetes, a condition caused by elevated blood glucose due to cancer treatments.

Author of Article photo

Dr. Sonali Thosani

Signs and Symptoms of Diabetes
People with high blood glucose often experience excessive thirst, frequent urination, blurry vision, and sudden weight loss. If you’re receiving chemotherapy and begin to have these symptoms, you should tell your doctor and have your blood glucose level checked. If you have a history of diabetes, it is important to check your blood glucose level during chemotherapy and to alert your doctor if you develop these symptoms or if your blood glucose is elevated.

Risks and Complications
If you have diabetes and your blood glucose level is not controlled, you are at increased risk of heart attack, stroke, and other complications, such as kidney failure, blindness, the need for amputations, and nervous system damage.

If you have secondary diabetes, the short-term increase in blood glucose may not contribute to long-term complica­tions. However, if your blood glucose level is high, your cancer treatment may have to be put on hold until your blood glucose is back under control. Short-term complications of secondary diabetes include infections and dehydration.

Author of Article photo

Dr. Victor Lavis

Treating, Managing, and Monitoring Diabetes
If you have diabetes, you need to have your cholesterol levels and blood pressure monitored. You should also undergo annual screening for diabetic eye and kidney disease.

Oral medications are available to treat diabetes, but you will need to take into consideration how their side effects might affect your cancer treatment. If your blood glucose level remains high despite the use of oral medications, you may be started on insulin therapy. This is usually temporary; however, some people may need to continue insulin therapy indefinitely to maintain good blood glucose control.

Your doctor may monitor your dia­betes control through the hemoglobin A1C test. This blood test determines your average blood glucose level over a three-month period. But for some people, especially those who have recently re­ceived a blood transfusion, this test is ineffective. Therefore, it’s important to learn how to check your blood glucose level at home using a glucose meter. Your doctor may advise you to check your glucose level before or after meals, and will use this information to decide if any changes need to be made in your course of treatment.

You may also need to adjust your diet and activity level to help manage your blood glucose. Your doctor or nurse can give you more specific recommen­dations, but adopting these healthy habits can help keep your blood glucose level in check:

  • Exercise at least 30 minutes a day.
  • Eat a diet rich in fresh fruits and vegetables.
  • Limit your carbohydrate intake.
  • Decrease saturated fats in your diet.
  • Avoid sugar-sweetened beverages.

Managing diabetes while living with cancer can be challenging. It requires coordination and communication among you and your healthcare team. But get­ting your diabetes under control is necessary for receiving the treatment you need for your cancer.

♦ ♦ ♦ ♦ ♦

Dr. Sonali Thosani is an assistant professor in the Department of Endocrine Neoplasia and Hormonal Disorders at the University of Texas MD Anderson Cancer Center in Houston, TX, with clinical interests in the management of steroid-induced hyper-glycemia in people with cancer. Dr. Victor Lavis is a professor in the Department of Endocrine Neoplasia and Hormonal Disorders at MD Anderson, with clinical interests in the management of diabetes and hyperglycemia in people with cancer.

Visit the American Diabetes Association website, diabetes.org, for more information about manag­ing and monitoring diabetes, along with a variety of diabetes-friendly recipes and other resources.

This article was published in Coping® with Cancer magazine, January/February 2014.

I’m Outshining Ovarian Cancer

by Karen Ingalls

Inspiration image

Leading up to my cancer diagnosis, I noticed that I had gained a few pounds and developed a protruding stomach, both of which were unusual for me since I had always bordered on being underweight. But I never considered these changes to be anything other than normal postmenopausal aging. When I continued to gain weight, I began an aggressive exercise and weight-loss program.

Fast forward to three months later when a CT scan revealed a very large tumor in my left lower abdomen. I sched­uled an appointment with a gynecologic oncologist for the next day, and a week later, I had a hysterectomy and colon resection that confirmed I had a rare, aggressive form of ovarian cancer – malignant mixed Müllerian tumor.

An important lesson I learned early in life is the beauty of the soul outshines any negative experience, including cancer.

The word cancer elicits fear in most everyone, yet often the things we fear are never quite as great as the fear itself. At a young age, I learned that attitude, acceptance, and determination are the keys to facing fear and healing the body, mind, and spirit. So when facing the challenge of cancer, I stayed positive – learning, growing, and putting my best healing efforts forward – the whole way through. I did not focus on being cured of the cancer; rather I focused on living my life with dignity and learning all I could from my new role as a woman with cancer.

Like many others traveling this road, I have experienced valleys and mountaintops, darkness and sunshine. I don’t know what the future holds for me, but I have learned a lot about my­self and have met some incredible people along the way. The challenge of ovarian cancer was an opportunity for me to become a better person. My life is far richer now, and my mission is to spread the word about this disease. I truly see each moment as a gift that is not to be taken for granted but lived to its fullest with love. An important lesson I learned early in life, which was reinforced with the challenge of ovarian cancer, is the beauty of the soul outshines any nega­tive experience, including cancer.

♦ ♦ ♦ ♦ ♦

Karen Ingalls is an ovarian cancer survivor living in Central Florida. She is the author of Outshine: An Ovarian Cancer Memoir (OutshineOvarianCancer.com), a volunteer with the Ovarian Cancer Alliance of Florida and Women for Hospice, a public speaker, and an advocate for ovarian cancer aware­ness. Karen blogs about health and wellness, relationships, spirituality, and cancer at OutshineOvarianCancer.blogspot.com.

This article was published in Coping® with Cancer magazine, January/February 2014.

Confronting Cancer as a Couple

by Sandra Bernstein, MSN, RN, CS, LMFT

Wellness image


(Photo by Blend Images / Shutterstock.com)

No one plans for cancer. It drops in suddenly, affecting not only your life but also the lives of everyone who cares about you, especially your spouse or partner. While each couple’s experience is unique, it’s com­mon for the predictability of daily life to be replaced with uncertainty. Whether cancer requires little change in your daily life for a short period or many changes that need to be accommodated over the long haul, change is inevitable. These changes can add stress to your relationship, but they also can create opportunities to deepen your connection.

Communicating Your Feelings
Good communication is essential for coping with cancer as a couple. However, fear and uncertainty often lead to a “con­spiracy of silence” where, in an attempt to protect each other, partners hide their concerns and feelings. This can cause isolation when they need each other’s support the most. In some cases, rather than actually listening to each other, couples will try to read each other’s minds. They assume they know how their partner feels, and then they act according to those assumptions.

Plan for cancer-free date nights, and engage in activities you enjoy doing together.

Author of Article photo

Sandra Bernstein

Using mindful communication con­cepts can help the two of you establish open communication. Set aside time to talk about your situation with the goal of trying to understand each other’s feel­ings. Listen with a sense of curiosity, reflecting back what you hear, and ac­knowledge your partner’s feelings and take in what he or she has said before you respond, even if you disagree. Don’t immediately try to fix things or offer reassurance, even when the feelings being expressed are scary or hard to hear. In­stead, ask “How can I be here for you?” Don’t get caught up in planning your response while your partner is talking, and don’t switch speakers until the first person feels understood. Repeat this process for each person in turn.

Try taking three relaxation breaths together when you first sit down to talk, as speakers switch, or if one or both of you become anxious or angry. It can be helpful to agree that either partner can call for a “time-out” if they feel emo­tions are getting out of control.

Make a point to discuss what the cancer diagnosis means to your relation­ship early on. Do you want to change your priorities and goals? What are your thoughts on making healthcare decisions, telling others about the diagnosis, and asking for help? What roles can each person play in the family? Who will be the researcher, the decision maker, the caretaker?

Once you know what treatment will entail, set up a planning meeting with your partner. Determine what adjust­ments might need to be made in daily routines and household tasks, and de­cide how you will get to treatment and doctors’ appointments. Identify resources and people who can help. Recognize that your needs might vary over the course of treatment, and any plans you make now need to be flexible.

Nurturing Your Relationship
Side effects of cancer treatment can affect sexual intimacy in many ways – fatigue and changes in sexual function in par­ticular. If you’re experiencing physical side effects, talk with your doctor about ways to maintain sexual health and functioning. It’s important to remem­ber that there is more to intimacy than intercourse; cuddling and touching are valid ways of maintaining an intimate connection. Make time to nurture this part of your relationship.

Additionally, it’s important to continue to have a relationship as a couple outside the cancer experience. Plan for cancer-free date nights, and engage in activities you enjoy doing together. Get creative – maybe it’s time to break out old board games or learn a new skill together.

A unique way to stay connected is by keeping a couple’s journal. You can use it to make note of things you want to discuss or do, share how you’re feel­ing, or share inspirational quotes. This journal doesn’t have to be limited to cancer issues; it can be a lovely way to share all aspects of your lives together.

♦ ♦ ♦ ♦ ♦

Sandra Bernstein is a family therapist in Montgomeryville, PA, a support group facilitator at the Cancer Support Commu­nity of Philadelphia, and a cancer survivor.

This article was published in Coping® with Cancer magazine, January/February 2014.

Your Guide to Making Prostate Cancer Treatment Decisions

by Steven Lamm, MD, Herbert Lepor, MD, and Dan Sperling, MD

Prostate Cancer Image

Ultimately, you are responsible for your own healthcare. Your doctor is, of course, an important part of figuring out health problems and helping you treat them, but when it comes to decision making and fol­lowing through on treatment and care, the buck stops with you.

A diagnosis of cancer is overwhelm­ing, and it can be tempting to sit back in shock and let your doctor take control. But this is where your partnership is even more critical. Finding the right treatment for your prostate cancer isn’t about looking at cancer cells under a microscope and then applying a treat­ment algorithm. It’s about looking at you as a whole person – your family, job, likes and dislikes, habits, personality, culture – and then finding the treatment that will work best to maintain both your health and your happiness.

Talking to Your Doctor
Full disclosure and open communication are important when working with your doc­tor to treat your prostate cancer. That means frank discussion about your sexual performance and habits, your emotional well-being, and other poten­tially sensitive topics. Remember that the patient-doctor relationship is highly confidential, and having these conver­sations will lead to better care for you.

The best treatment for your cancer is one that will prolong your life without damaging your overall quality of life. This will be different for every man based on his personal circumstances and the specific characteristics of the prostate cancer itself. A full and frank discussion with your doctor is the best way to determine what course of treatment is right for you.

Author of Article photo

Dr. Steven Lamm

A Treatment Team
While a urolo­gist typically diagnoses prostate cancer, your treatment may involve a number of other specialists, including a radiation oncologist, an interventional radiologist, and others. All the physicians involved with your prostate cancer care can and should coordinate treatment and records among themselves.

It’s important to let your urologist know about any other chronic health conditions for which you are being treated. Likewise, you should make sure your other doctors are aware that you are being treated for prostate cancer. Sometimes, treatment and medicines for one health condition can interact with those for another, so sharing your cancer care and health information is important.

Author of Article photo

Dr. Herbert Lepor

Second Opinions
It’s important that you are confident in your prostate cancer treatment decision. If you’re uncom­fortable or still have questions after you’ve had a full consultation with a doctor, you need to get a second opinion for your own peace of mind. Realize that the second opinion may be differ­ent from the first, which might trigger the need to seek a third opinion. But at the end of the day, you need to be at peace with the decision you make.

Because different specialists focus on different types of prostate cancer treatment, it is helpful to visit different doctors to learn more about your options when you are not sure which path to take. For example, a urologic surgeon can offer the most insight into prostate sur­gery, a radiation oncologist can tell you all about radiation therapy, and an inter­ventional radiologist can explain MRI and prostate ablation. Each of these spe­cialists is very comfortable and confident in their own treatment protocol. The best-case scenario is to find a practice or prostate cancer center where these different specialists work collaboratively with one another to provide you with integrated care.

Author of Article photo

Dr. Dan Sperling

The “Art” of Prostate Cancer Treatment
Prostate cancer is unique in that there is almost as much “art” to appropriate diagnosis and treatment as there is science. The science tells us what types of cancers are more likely to be aggressive and what percentage of men may benefit from a certain kind of treatment. But it doesn’t give us the full picture of what the right choice is for you as an individual.

From screening to treatment, one size certainly does not fit all in prostate can­cer. Every cancer is biologically different, and every man has different personal needs for treatment, based on his health, age, lifestyle, and emotional needs. Looking at all of these factors is the best way to determine what is right for you.

Finding Your Treatment Path
Treatment for prostate cancer runs the gamut from surgical removal to a “wait, watch, and see” approach of scheduled screenings and careful observation. To help determine the best treatment path for you as an individual, you and your doctor should consider the following:

♦ Age A 50-year-old man usually has very different personal and health needs than an 80-year-old man. For men in the very late years of life, surgery or other invasive treatments for prostate cancer will do little to prolong their lives and can instead cause harm.

♦ Health status If you have other seri­ous health conditions, they should be taken into consideration when choosing your prostate cancer treatment. Your doctor should explain how your overall health would be affected by various treatment choices. For example, men with pre-existing bowel diseases such as ulcerative colitis, diverticulitis, or Crohn’s disease would be poor candi­dates for radiation therapy.

♦ Psychological impact Your emotional well-being is just as important as your physical health. Some men find it dif­ficult to cope with a treatment path where cancer is left in the prostate and monitored. Others may have extreme anxiety and depression around the idea of sexual or urinary side effects from surgery. Minimizing stress around pros­tate cancer treatment is an important part of a person’s overall health.

♦ Individual needs and lifestyle Jobs, family dynamics, finances, sexual activ­ity, personal passions – each of these should be taken into consideration when choosing an appropriate prostate cancer treatment. As you and your doctor dis­cuss the side effects and outcomes of different treatments, think about how they would affect the way you actually live your life.

In an ideal world, your doctor would discuss all of these factors with you in detail to help guide your treatment choice. But with the time and schedul­ing pressures of the typical doctor’s office visit, things can get overlooked. Write a list of questions you have before the ap­pointment and bring it along, with a pen to take notes. You may also want to bring a spouse or sig­nificant other as a second set of ears. And remember, in the vast majority of cases, there is no rush to come to a decision as you sit in your doctor’s office hearing your options for the first time. If you need time to contemplate your choices and discuss them with family, take it.

♦ ♦ ♦ ♦ ♦

Dr. Steven Lamm is the director of the Men’s Health Center at New York University’s Langone Medical Center in New York, NY, and a practicing internist. Dr. Herbert Lepor is the Martin Spatz Chairman of the Depart­ment of Urology and the director of the Smilow Comprehensive Prostate Cancer Center at NYU Langone Medical Center. Dr. Dan Sperling is the medical director at the Sperling Prostate Center in New York, NY.

Excerpted with permission from Redefining Prostate Cancer: An Innovative Guide to Diagnosis and Treatment by Steven Lamm, MD, Herbert Lepor, MD, and Dan Sperling, MD, © 2013 by Spry Publishing.

This article was published in Coping® with Cancer magazine, January/February 2014.

The Fashionista Fights Again

by Jennifer Pellechio-Lukowiak

Inspiration image

In April 2007, I was a 38-year-old working mom who had just received a shocking diagnosis of stage II breast cancer. After enduring a lumpectomy and 14 months of chemo, radiation, and adjuvant therapy, my inter­rupted life was finally getting back on track. I was enjoying my job at a fashion company, and the book I had written about being young and fighting breast cancer was doing well. As I reached my five-year survival mark, my doctors were starting to use the other C word: cured. But life is full of surprises, extreme highs, and extreme lows, and sometimes they all occur within the same week.

My routine breast MRI was coming up, and honestly, I wasn’t even worried. For the past five years, my team of doctors had diligently checked me every six months.

A few days after the MRI, I awoke to the news that my regional newspaper had published an article about my book. That was one of the “highs.” Just one day later, however, the “low” would rear its very ugly head.

My breast surgeon called the next evening. She said the MRI showed a suspicious growth in my right breast, the same breast that had can­cer five years prior. She wanted to biopsy the growth immediately.

Cancer? Again? This doesn’t happen five years later, does it? My head was spinning. I had done everything I was supposed to do. I had fought through my cancer treatments. I had adopted a healthier lifestyle; I was more conscientious of what I ate, and I exercised regularly. I was supposed to be done with cancer.

Nothing bad can happen in a shoe closet, right?

Inspiration image

Jennifer Pellechio-Lukowiak

I was at work when I received the phone call with the biopsy results, the call I had been dreading. I scurried into our shoe sample closet to take the call. I needed a private place to talk. For a woman, is there a better place to be than a shoe closet? Nothing bad can happen in a shoe closet, right?

Nestled between some seriously adorable peep-toes and killer stilettos, I placed my coffee mug beside my open note­pad. As soon as our hellos were out of the way, my doctor said she was sorry. She knew this was going to be very difficult for me to hear, but yes, I did have breast cancer. Again.

“Are you freaking kidding me!?” I gasped into the phone, shaking with disbelief. Eloquent, I know.

I shut the door to the shoe closet, turned the lights off, and sat on the floor for an hour. I needed time to process the information. When I eventually emerged, I decided to finish out the day at work. I had to keep busy.

Later that evening, my surgeon, Dr. Negin Griffith, and I put together a plan of action, which allowed me to feel a little more in control of this out-of-control situation. We de­cided my best option was an immediate double mastectomy followed by a DIEP flap reconstruction.

When I met with my oncologist, I could tell he was stunned by the news. He reviewed the reports and quickly surmised that this was not my old cancer resurfacing but a brand new cancerous growth with different properties. He agreed with my breast surgeon’s strategy of surgery first. Then, once I healed, I would start chemo. Again.

I was ready for the surgery in every way possible: physi­cally, mentally, and emotionally. And once the 14-hour surgery was over, I awoke with a profound sense of relief. I felt like I had finally slayed the beast. I spent six weeks recovering, slowly regaining my strength and acclimating myself to my newly reconstructed breasts, flat tummy, and fresh scars, and then began my second tour of duty in Chemoland.

As my second bout with cancer comes to an end, I’m feeling good. The hardcore chemo is finished, but I will remain in treatment for the next several months. I will also undergo surgery to create my new nipples. Technically, I don’t need them, but I like to think of them as jewelry, the accessory that completes the look – and I’m all about accessorizing.

Just as I had the first time around, I continue to count my blessings. I remind myself that I got through this before and I’ll get through it again. I am now twice as fearless. I am twice as tough. I am a two-time survivor.

♦ ♦ ♦ ♦ ♦

Jennifer Pellechio-Lukowiak is a two-time breast can­cer survivor and author of Does This Outfit Make Me Look Bald? How a Fashionista Fought Breast Cancer with Style. Learn more about Jennifer and her book at TheFashionistaFights.com.

This article was published in Coping® with Cancer magazine, January/February 2014.

The Art of Living in the Present

by Katherine Easton, LCSW, OSW-C

Wellness image

Living with cancer often defines how we view not only our lives and our health but also our future. To focus on the future is natural for all of us, as we plan and organize our thoughts and actions about what will happen tomorrow, next week, next month, or even years from now. How­ever, people living with cancer may find themselves constantly worried about their future – how they will look or feel, whether their cancer will come back, whether they will be able to en­joy certain special occasions, whether they will be able to reach their goals and dreams.

These worries are often dictated by a voice that dwells inside our heads. This internal narrator guides our life experience, helping us interpret the world and our relationship to it. It in­fluences how we think and feel about our life as we are living it. Unfortu­nately, for many of us, this inner voice sometimes refuses to quiet and be­comes an obstacle to experiencing moments of stillness, relaxation, and contentment. It won’t allow us to just be.

The best way to quiet this voice is to reach a state of relaxation and be present in each moment. The ability to live and think in the present is com­monly referred to as mindfulness.

With principles found in Buddhism, mindfulness not only is a way to awaken our minds and be present in the here and now; it is also a philosophy of living and being. It teaches us how to live moments in each day, instead of focusing on what lies ahead. The challenge of living mindfully is recog­nizing that, in this one moment, you are carrying within you all your hopes and fears, pain and pleasure, joy and grief. Living mindfully requires that you fully immerse yourself in the pres­ent moment, experiencing the thoughts and feelings that are passing through you right now.

Living mindfully requires that you fully immerse yourself in the present moment, experiencing the thoughts and feelings that are passing through you right now.

Author of Article photo

Katherine Easton

So how do you learn to live in the present? It takes practice and a commit­ment of time and energy. Here are some ways you can practice living mindfully:

  • Pay careful attention to what you’re experiencing through listening and looking, observing rather than thinking.
  • Learn some focused breathing tech­niques, which allow you to feel how your body moves, how it inhales and exhales.
  • Practice mindfulness meditation or gentle yoga.
  • Awaken your senses by trying some­thing new and taking the time to notice with fresh eyes how the experience makes you feel.
  • Find time each day for quiet moments of peace. Clear your mind of that nagging inner voice.
  • Refrain from judging your interactions and experiences with others.
  • Avoid striving. Just be; don’t try to do. Constantly being “results driven” causes us to lose sight of life’s simple pleasures.
  • Come to terms with your life, even difficult experiences and deep regrets. Once you fully experience the emo­tions brought on by negative events, you can begin to accept them, which will bring you to a deeper understand­ing of yourself.
  • Let go. Many people have a hard time letting go of negative feelings or of the need to be in control of every aspect of their life. Only you can decide to be at peace with your life. Letting go allows you to love fully and deeply and to appreciate the joy of just being alive in the moment.

Facing cancer mindfully requires that you alter the normal course of how you view your life and its meaning. Through mindfulness, you may find room to grow in strength and wisdom as you focus on the here and now rather than on the past or the future. In the words of author Eckhart Tolle in The Power of Now: “Life is now. There was never a time when your life was not now, nor will there ever be.”

♦ ♦ ♦ ♦ ♦

Katherine Easton is a certified oncology social worker with Atlanta Cancer Care, which is affiliated with Northside Hospital Cancer Institute, in Atlanta, GA. She provides support and advice to cancer survivors in an outpatient medical oncology setting.

This article was published in Coping® with Cancer magazine, January/February 2014.

Got Chemo Brain?

by Karen Syrjala, PhD

Knowledge image

A harsh irony is sometimes involved in moving on after cancer treatment. Having emerged from the darkness of a life-threatening disease, you may now find yourself in a haze of cognitive problems known collectively as chemo brain.

Common words and familiar names are on the tip of your tongue but you just can’t spit them out. Keys, cell phones, and remote controls are misplaced. Dis­tractions derail the simplest train of thought and interfere with completing everyday tasks. The world you knew and the life you had before cancer may feel out of focus – even out of reach.

But there is good news for survivors struggling with chemo brain. Not only has research confirmed what survivors have been reporting all along – that chemo brain, despite some lingering skepticism, is real – but we now know that the symptoms of chemo brain are largely temporary for most people, and there are proven ways of coping with them.

Use helpful memory tools.
Imple­menting some simple memory-boosting strategies into your routine will make your life easier if you’re dealing with chemo brain. For example, carry a note­book, smartphone, or tablet with you to keep track of all your appointments, lists, errands, and other tasks. Put every­thing you want to remember in it, and always keep it in the same place – in your handbag or backpack is ideal. Then be sure to leave that handbag or backpack in the same place every day – perhaps in a basket by your front door. Anything you want to take with you when you leave the house goes in the basket as well: keys, items to return, your wallet, etc.

It’s been proven that exercise is good for the mind. Set aside 30 minutes for your brain and body five days a week.

Author of Article photo

Dr. Karen Syrjala

If you regularly forget to do some­thing, put a sticky note in a place where you will always see it. For example, if you forget to take medication at night but you always remember to brush your teeth, keep your medication by your toothbrush and put a sticky note in front of it that says medication. It’s also help­ful to repeat aloud anything you want to remember. Mental rehearsal can make it easier for the information to stick.

You may want to try computer pro­grams that are designed to improve memory and attention span. It is not yet known if they can help cancer survivors combat chemo brain, but they certainly can’t hurt. So go ahead and try the ones that interest you.

Take care of your physical health.
It’s been proven that exercise is good for the mind. Set a goal of at least 150 min­utes of moderate-intensity exercise per week. Start slowly and gradually build up to your goal. Engaging in regular exercise will increase blood flow to your brain, help stabilize your emotions, boost your confidence, and lessen your fatigue.

You also should develop good sleeping habits, as getting a good night’s sleep can help boost your memory and con­centration. Eating healthy foods is beneficial as well.

Make lifestyle adjustments.
Take a close look at your lifestyle, and make adjustments that will help you cut through the fog of chemo brain. Do your most intense mental work during the time of day when you are most alert. Pace your daily expectations and scheduling to make each day’s demands match your abilities as they are right now, not as you want them to be. Schedule down­time; meditate, walk, or rest to let your brain recover from intense work and to consolidate learning. Incorporate sim­ple habits into your routine like leaving your keys in the same place every day or always doing regular tasks in the same order so they become second na­ture, and save the heavy thinking for when you need it most. Eliminate dis­tractions so you can concentrate on one task at a time. Turn off your radio, TV, computer, and phone, and close the door when you need to focus.

Remind yourself that it’s fine to do things differently than you used to; what counts is accomplishing what needs to be done, not how you do it. Breathe deeply, relax, and give yourself a break when you feel frustrated. These life­style changes will eventually become your new lifestyle, one geared toward minimizing the disruptions caused by chemo brain.

Face your feelings.
If you’re experiencing depression, feeling frustrated, fearful, or angry, or going through other mood disturbances, get help. These kinds of feelings can complicate mem­ory problems. Tell your doctor if you’re experiencing these feelings and ask for guidance, seek out counseling, and take any other steps needed to manage your mood.

Remember that you’re a survivor.
Even if chemo brain is interfering with your memory, always keep one thing firmly in mind: You’ve already made it this far against a life-threatening chal­lenge, and you can keep going. The symptoms of chemo brain should pass with time. Go easy on yourself and take heart – you’re a cancer survivor. You can survive and thrive through this too.

♦ ♦ ♦ ♦ ♦

Dr. Karen Syrjala is codirector of the Fred Hutchinson Cancer Research Center Survi­vorship Program, director of Biobehavioral Sciences, and a member of the Clinical Re­search Division at Fred Hutchinson Cancer Research Center in Seattle, WA.

This article was published in Coping® with Cancer magazine, November/December 2013.

Cancer-Free

by Sylvia Solomon

 
Inspiration image

Cancer has taught me to be free
To count my blessings and
Don’t worry about tomorrow
Tomorrow will take care of itself.

Cancer has taught me to be strong
Your life has meaning and purpose
Inspire others to greatness
Keep encouraging along the way.

Cancer has taught me to smile
Learn to laugh at myself and others
Life is too short
Take the time to smile.

Cancer has taught me to have joy
Joy in living
Joy in giving
Joy in the time I have on earth.

Cancer has taught me to love
Love myself and the world
From my heart to yours
I send my love.

♦ ♦ ♦ ♦ ♦

Sylvia Solomon is a colon and breast cancer survivor living in Raleigh, NC, and author of Ma-Sect To Me.

This article was published in Coping® with Cancer magazine, January/February 2014.

Learning to Advocate for Yourself

to Get the Support You Need through Cancer

by Irene Goss-Werner, MSW, LICSW

Knowledge image

Communicating your needs when you have cancer may seem straightforward, but for many people, self-advocacy can be daunting. However, once you learn some basic self-advocacy skills, you’ll find that communicating your needs to your medical team, partner, family, friends, or colleagues will allow others to be involved in your care in the ways you want them to be. By using the follow­ing purposeful, thoughtful approaches to communication, you’ll be better able to let others know what is and is not helpful, while enabling yourself to set limits and more easily express your concerns.

Clarify what you need.
Don’t assume that others will automatically know what you need. Your support system may be unsure of what is most helpful to you. They also may be strug­gling with the desire to be supportive while respecting your privacy. Thus, your specific input can provide needed clarification for those who want to help. You can give concrete suggestions for how a person can help, such as doing your grocery shopping, preparing or delivering meals, driving your children to and from school, or helping take care of your pet. If you find comfort in the attentive presence of a friend, you might simply suggest that person drop by for a visit. Additionally, it’s important to clarify your needs to your medical team, as they need to know what is most helpful to you in order to optimize your care.

Have your feelings heard.
Commu­nicating your feelings is a positive way to relate with others, opening a window to your innermost self. This can be a stepping-stone toward resolving unmet or unidentified needs. However, some­times when you’re trying to express your feelings, a well-intentioned friend may focus on problem-solving and making recommendations rather than being a truly attentive listener. You might find yourself teaching others when you simply need an ear to listen instead of practical assistance. Having your feelings genuinely heard by an­other provides validation and a witness to what you’re experiencing.

If you find comfort in the attentive presence of a friend, you might simply suggest that person drop by for a visit.

Author of Article photo

Irene Goss-Werner

Give yourself permission to ask for help.
You may be concerned that if you ask for help, others will see you as a burden and will feel overwhelmed or uncomfortable. Perhaps before your diagnosis, you often fulfilled the role of caregiver and you now feel that you are disappointing those you once provided care for by being unable to maintain that role. You may feel guilty or worry you’re acting selfishly, but those close to you likely understand and genuinely want to help you. Letting people know some of your concrete needs gives them the opportunity to actively participate in this experience with you, which may in turn help them better cope with your situation, as they will know they are making a differ­ence. Framing a request can take a range of forms, such as “I wonder if it would be possible for you to …” or “You know I am so used to being inde­pendent that asking for help is difficult, but it would be helpful if you …”

One person doesn’t have to meet all of your needs.
It may be most com­fortable and productive to allow more than one person to help out. However, identifying a point person to function as the main com­municator among your support sys­tem who will organize tasks and schedules can be useful. While this type of resource may not be an option, be receptive to those who are available and who want to be involved in helping you through this time.

Set limits.
As you focus on pro­moting self-care, be intentional about setting limits. For example, watch the length of time you spend talking on the phone, entertaining visitors, working on the computer, or doing household tasks. Your support system may not realize your level of fatigue or dimin­ished stamina, so it’s important to let them know when you need to rest.

Advocating for yourself in this way may feel awkward or uncomfortable at first, but keep trying. You’ll find that clear, concise communication is the best way to get the support you need.

♦ ♦ ♦ ♦ ♦

Irene Goss-Werner is a clinical social worker in the Gynecologic Oncology program at Dana Farber/Brigham and Women’s Cancer Center in Boston, MA.

This article was published in Coping® with Cancer magazine, January/February 2014.

How Is Chronic Myeloid Leukemia Treated?


Knowledge image

Treatment options and recommen­dations for people with chronic myeloid leukemia depend on several factors, including the phase of the disease, possible side effects, and your preferences and overall health. Take time to learn about your treatment options, and be sure to ask questions about things that are unclear. Also, dis­cuss the goals of each treatment with your doctor and ask what you can expect while receiving the treatment.

Targeted Therapy
Targeted therapy is a treatment that attacks the cancer’s specific genes, proteins, or the tissue environment that contributes to cancer growth and survival. This type of treat­ment blocks the growth and spread of cancer cells while limiting damage to normal cells.

Not all cancers have the same targets. To find the most effective treatment, your doctor may run tests to identify the genes, proteins, and other factors involved in your leukemia. As a result, doctors can better match each indi­vidual with the most effective treatment whenever possible.

For CML, the target is the unique protein called the BCR-ABL tyrosine kinase enzyme. There are five drugs, called tyrosine kinase inhibitors or TKIs, currently used to target tyrosine kinase enzymes for CML: imatinib (Gleevec), dasatinib (Sprycel), nilotinib (Tasigna), bosutinib (Bosulif), and ponatinib (Iclusig). All five drugs can stop the BCR-ABL enzyme from working, which causes the CML cells to die quickly.

To find the most effective treatment, your doctor may run tests to identify the genes, proteins, and other factors involved in your leukemia.

People receiving a TKI should have regular check-ups to see how well the treatment is working. Sometimes, a tyro­sine kinase drug stops working and the CML develops resistance to it. Resis­tance can occur if a person does not take his or her medication regularly, as pre­scribed. Even if the medication is taken correctly, CML may become resistant to TKIs, so it’s important to receive regular monitoring with cytogenetic testing, fluorescence in situ hybridiza­tion (FISH) testing, or polymerase chain reaction (PCR) testing to deter­mine how well the drug is continuing to work. If the medication you start with stops working, the dose may be increased or a different tyrosine kinase drug may still be effective.

Chemotherapy
This type of treat­ment is the use of drugs to kill cancer cells, usually by stopping the cancer cells’ ability to grow and divide. In sys­temic chemotherapy, the drugs travel through the bloodstream to reach cancer cells throughout the body. A chemo­therapy regimen usually consists of a specific number of cycles given over a set period. You may receive one drug at a time or combinations of different drugs at the same time.

 

A drug called hydroxyurea (Hydrea, Droxia) is often given to lower the number of white blood cells until the definite diagnosis of CML is made. Given in capsule form, this drug works well to return blood cells to normal levels within a few days or weeks and reduce the size of the spleen, but it does not reduce the percentage of cells with the Philadelphia chromosome and does not prevent blast crisis (when more than 30 percent of the cells in the blood or bone marrow are immature white blood cells) alone. Although hydroxyurea has few side effects, most people newly diagnosed with chronic phase CML receive imatinib or other tyrosine kinase inhibitors as soon as possible.

In 2012, the drug omacetaxine mepe­succinate (Synribo) was approved by the FDA for people with chronic or accelerated phase CML that is not responding to a TKI. Omacetaxine is given by injection under the skin daily for seven to fourteen days.

Stem Cell Transplantation
A stem cell transplant is a medical procedure in which bone marrow that contains leukemia is replaced by highly special­ized cells called hematopoietic stem cells that develop into healthy bone marrow. Hematopoietic stem cells are found both in the bloodstream and in the bone marrow. Before recommend­ing transplantation, doctors will talk with you about the risks of this treat­ment and consider several other factors, such as your type of leukemia, results of any previous treatment, and your age and general health.

There are two types of stem cell trans­plantation: allogeneic and autologous. A person undergoing an allogeneic transplant receives cells from another person, whereas a person undergoing an autologous transplant receives his or her own stem cells. Only allogeneic transplants are used to treat CML. In both types, the goal of transplantation is to destroy cancer cells in the marrow, blood, and other parts of the body and allow replacement blood stem cells to create healthy bone marrow. In most stem cell transplants, a person receives high doses of chemotherapy, radiation therapy, or both to destroy as many cancer cells as possible.

Immunotherapy
Also called biologic therapy, immunotherapy is designed to boost the body’s natural defenses to fight the cancer. It uses materials made either by the body or in a laboratory to improve, target, or restore immune system function. Interferon (Roferon-A, Intron A, Alferon, Infergen) is a type of immunotherapy. It can reduce the number of white blood cells and some­times decrease the number of cells that have the Philadelphia chromosome. Interferon therapy was the primary treat­ment for chronic phase CML before the targeted therapy imatinib became avail­able. A clinical trial showed that imatinib worked better to treat CML than inter­feron, with fewer side effects. Therefore, interferon is no longer recommended as the first treatment for CML.

Palliative Care
In addition to treat­ment to slow, stop, or eliminate the disease, an important part of care is relieving symptoms and side effects of CML and its treatment. This approach is called palliative or supportive care, and it involves addressing your physi­cal, emotional, and social needs at any stage of illness.

In addition to treatment to slow, stop, or eliminate the disease, an important part of care is relieving symptoms and side effects of CML and its treatment.

Palliative treatments often include medication, nutritional changes, relax­ation techniques, and other therapies. You may also receive palliative treat­ments similar to those meant to eliminate the leukemia, such as chemotherapy, surgery, and radiation therapy.

Before treatment begins, talk with your healthcare team about the possible side effects of your specific treatment plan and your supportive care options. During and after treatment, be sure to speak up if you’re experiencing a prob­lem so it can be addressed as quickly as possible.

Recurrent CML
It is not yet proven whether imatinib, dasatinib, or nilotinib, or the newer drugs bosutinib, ponatinib, or omacetaxine, can cure CML. A remis­sion (when leukemia cannot be detected in the body by cytogenetic testing and there are no symptoms) can be tempo­rary or permanent. This uncertainty leads to many survivors feeling worried or anxious that the leukemia will come back. While many remissions are per­manent, understanding the risk of recurrence and your treatment options may help you feel more prepared if the leukemia does return.

If the leukemia returns despite the original treatment, it’s called recurrent leukemia. When this occurs, you will undergo another cycle of testing to learn as much as possible about the recur­rence, including whether the leukemia is in a different phase. After testing is finished, you and your doctor will talk about your treatment options. Often the treatment plan will include therapies such as targeted therapy, chemotherapy, and immunotherapy, but they may be used in a different combination or given at a different dose than the first time you were treated. Your doctor may also suggest clinical trials that are studying new ways to treat your type of recur­rent leukemia.

People with recurrent leukemia often experience emotions such as disbelief or fear. If you experience these emotions, you should talk with your healthcare team about your feelings and ask about support services to help you cope.

Refractory CML
If the leukemia does not respond to treatment, it is called refractory leukemia. People with this diagnosis are encouraged to talk with doctors who are experienced in treating this type of leukemia, because there can be different opinions about the best treatment plan. You might consider seeking a second opinion before start­ing treatment so you are comfortable with the treatment plan chosen. Sup­portive care will be important to help relieve symptoms and side effects.

For most people, a diagnosis of re­fractory leukemia is very stressful and, at times, difficult to bear. People with refractory leukemia and their families are encouraged to talk about their feel­ings with doctors, nurses, social workers, or other members of the healthcare team. It may also be helpful to talk with others with the same diagnosis, including through a support group.

♦ ♦ ♦ ♦ ♦

Reprinted with permission from Cancer.Net © 2013 American Society of Clinical Oncology. All rights reserved.

This article was published in Coping® with Cancer magazine, November/December 2013.

Coping® does not endorse or recommend any particular treatment protocol for readers, and this article does not necessarily include information on all available treatments. Articles are written to enlighten and motivate readers to discuss the issues with their physicians. Coping believes readers should determine the best treatment protocol based on physicians’ recommendations and their own needs, assessments and desires.

Know Your Options for Starting a Family after Cancer

by Sarah C. Hessler, MD, and Aimee Seungdamrong, MD

Wellness image

The ability to start a family is now a possibility for increasing numbers of women and men after cancer treatment. If you’ve been wondering whether you’ll be able to have children after chemotherapy or radiation, you’ll be pleased to know that, thanks to advances in the field of reproductive assistance and fertility preservation, you do have several options to consider.

For Women
If your ovaries and uterus are still functioning after com­pleting chemotherapy or radiation treatments, you can likely become pregnant without assistance. However, some women experience early meno­pause or a decrease in fertility caused by cancer treatments. This is where fertility preservation comes into play.

Fertility preservation options for women include freezing fertilized embryos or unfertilized eggs for future use, with embryo freezing being the most effective method. To do this, mature eggs are taken from your ovaries after a 10- to 14-day course of injectable medications. This is usually done prior to starting chemotherapy or radiation. The eggs are then fertilized in a labora­tory with your partner’s or a donor’s sperm to form embryos, which are frozen for future use. When you’re ready for pregnancy, the embryos are thawed and placed in your uterus.

Fertility preservation allows a woman to freeze her eggs or embryos for future use.

Author of Article photo

Dr. Sarah Hessler

Some women choose to freeze their unfertilized eggs rather than embryos. With this method, the eggs are fertil­ized after they have been thawed, and then the resulting embryo is placed in your uterus.

One disadvantage of egg or embryo freezing is that the ovarian stimulation required for maturation of the eggs can take two to three weeks, possibly delay­ing cancer treatment. In addition, this stimulation can cause estrogen levels to rise up to10 times that of their natural levels. If you have an estrogen-sensitive tumor, this may increase your risk for tumor recurrence; therefore, you will need clearance from your oncologist before attempting this procedure.

Author of Article photo

Dr. Aimee Seungdamrong

An experimental option that avoids these high doses of medications and high levels of estrogen is in-vitro maturation. For in-vitro maturation, immature eggs are taken from the ovary, matured in a laboratory, and then frozen.

If you have not yet undergone chemo­therapy or radiation treatment, you have even more fertility preservation options, including shielding your ova­ries from radiation, surgically moving your ovaries out of the pelvic radiation field, and medically suppressing your ovaries prior to treatment, all of which may decrease your risk of premature ovarian failure.

Ovarian tissue freezing is an ex­perimental option that is best done prior to beginning chemotherapy or radiation to the pelvis. For this technique, ovar­ian tissue is removed from your body and frozen in small strips. These strips are later re-implanted into your body, where they can recover the ability to produce eggs. This method may not be appropriate for BRCA gene mutation carriers and women with leukemia, how­ever, as their ovarian tissue may contain cancerous cells. Studies are currently being conducted to develop other ways to obtain eggs from ovarian tissue without the need for re-implantation.

If your ovaries are not working well enough for you to conceive or produce eggs to freeze but your uterus is still functioning, you can use donor eggs to achieve pregnancy. For this technique, an embryo made by combining an egg from a healthy donor with your partner’s or a donor’s sperm is placed into your uterus. If you have lost the ability to carry a pregnancy due to pelvic radiation, hysterectomy, or another condition affecting your uterus, you might consider using a gestational carrier. A gestational carrier is a woman who will carry a pregnancy conceived using an embryo fertilized from one of your eggs or from a donor egg.

For Men
Chemotherapy and radiation treatments may affect a man’s sperm count. A semen analysis can evaluate your sperm count and motility. If you haven’t yet under­gone chemotherapy or radiation treatment, your sperm can be frozen for future use.

Sperm from just one ejaculate may be enough for several in-vitro fertilization cycles, as only one sperm is needed per egg. If very few sperm are present in your semen after cancer treatment, sperm can be surgically removed directly from one of your testicles. In cases where sperm production has declined sub­stantially, donor sperm can be used to fertilize your partner’s eggs.

With the wide variety of fertility-preservation options available to both men and women, many cancer survivors can look forward to build­ing a family after treatment. For those who are unable to or who choose not to utilize these therapies, adoption is still a viable option. Talk with your doctor before treat­ment begins to sort out your options and come up with a fertility preser- vation plan that works best for you.

♦ ♦ ♦ ♦ ♦

Dr. Sarah Hessler is a fellow at Rutgers New Jersey Medical School in Newark, NJ. Dr. Aimee Seungdamrong is a physician at University Reproductive Associates in Hasbrouck Heights, NJ, and an assistant professor in the department of Obstetrics, Gynecology, and Women’s Health at Rutgers New Jersey Medical School.

This article was published in Coping® with Cancer magazine, November/December 2013.

Coping® does not endorse or recommend any particular treatment protocol for readers, and this article does not necessarily include information on all available treatments. Articles are written to enlighten and motivate readers to discuss the issues with their physicians. Coping believes readers should determine the best treatment protocol based on physicians’ recommendations and their own needs, assessments and desires.

Swallowing Exercises Shown to Preserve Function in People with Head and Neck Cancer Receiving Radiation


Photo by Cancer Type

A study from UCLA’s Jonsson Com­prehensive Cancer Center has found that people with head and neck cancer receiv­ing radiation as part of their treatment were less likely to experience unwanted side effects such as worsening of diet, need for a feeding tube, or narrowing of the throat passage if they complied with a set of prescribed swallowing exercises during therapy.

The five-year study was led by Dr. Marilene Wang, JCCC member and professor-in-residence in the department of Head and Neck Surgery at UCLA’s David Geffen School of Medicine in Los Angeles, CA. The study was pub­lished in the journal Otolaryngology – Head and Neck Surgery.

Surgery and radiation have been the traditional treatments for head and neck cancer, but with the advent of improved and targeted chemotherapy, many types of this disease are treated with chemotherapy and radiation (chemoradiation) in the hope of preserv­ing the tissue and structure. Despite the sparing of critical tissue, however, pres­ervation does not always translate to normal, natural swallowing ability.

“The real benefit of this compliance is that patients benefit immediately after treatment and for a prolonged time afterward.”

Dr. Wang’s study was designed to evaluate the swallow preservation pro­tocol, in which survivors engaged in swallow therapy before, during, and after radiation treatment. The effectiveness of the swallow preservation protocol was measured by individuals’ continued abil­ity to swallow and how that affected their diets, whether they needed a feeding tube, and whether they developed nar­rowing of the throat, compared with a group of people who did not utilize the swallow preservation protocol.

Study participants’ swallowing abil­ity was assessed two weeks before their treatment. They were also given infor­mation about their cancer and what side effects they could expect, as well as an introduction of the swallowing exercise program. The exercises were designed to maintain the range of motion of mouth and neck muscles involved in swallowing and to counter the formation of excess tissue caused by the radiation, which contributes to loss of swallowing ability.

Among 85 participants, 57 completed the swallow preservation protocol and 28 did not. Swallow preservation exercises before and during radiation treatment appeared to maintain partici­pants’ ability to swallow. Those who completed the swallow preservation pro­tocol had a faster return to normal diet and prevented narrowing of the throat.

“Our results demonstrate that com­pliance with swallow therapy during radiation or chemoradiation treatment is beneficial to patients’ retaining their ability to swallow after treatment is over,” says Dr. Wang. “The real benefit of this compliance is that patients benefit immediately after treatment and for a prolonged time afterward.”

♦ ♦ ♦ ♦ ♦

For more information, visit American Academy of Otolaryngology-Head and Neck Surgery at entnet.org.

This article was published in Coping® with Cancer magazine, November/December 2013.

Dealing with “Cancer PTSD”

by Joanna Montgomery

Inspiration image


(Photo by Brooke Kelly Photography)

From the time I was diagnosed with cancer, an invisible count­down clock started ticking in the back of my head. I was told I’d need 24 rounds of chemotherapy to eradicate the cancer inside me. So from the very beginning, I thought of my life in terms of how many treatments I had left. Three treatments down, twenty-one to go.

Twelve down, twelve remaining.

Just eight more left. Then six. Then three.

One more treatment left. And then what? Everything would go back to the way it was before I was diagnosed?

Well, not quite. But I didn’t know that then.

At first, I felt a sense of accom­plishment and excitement with each treatment successfully in my rear-view mirror. However, as the end of treatment neared, I started feeling increasingly nervous.

You see, as unpleasant as chemo and radiation can be, there’s something comforting about being in treatment. There’s a strong sense of security that comes with being closely watched by medical professionals. In having a dedicated care team monitoring your blood, checking your vital signs, asking you questions, and listening to your thoughts and concerns. In walking into the cancer treatment center and being heartily greeted like Norm on Cheers. There’s a sense of community there that is warm and welcoming and safe.

Once you’re done with treatment, however, you’re often unceremoniously cut loose, the guard station abandoned.

As unpleasant as chemo and radiation can be, there’s something comforting about being in treatment.

I was a mixed bag of emotions on my last day of treatment. I felt relief at having finally completed six months of intensive intraperitoneal chemotherapy. But I also felt something else that day – uneasiness. Who now would be mind­ing the shop?

What I have learned in the year since my last infusion is that the end of treat­ment is not the end of cancer. Cancer will always be with me, even when there is no tangible evidence of disease. We are forever changed by our diagno­ses; we will never again be the same. We see our lives and relationships through a new filter.

Part of this has to do with the linger­ing side effects of treatment. I may never fully recover from the physical toll chemotherapy took on my body. And the changes I’ve experienced are not just physical. Cancer took an emo­tional toll on me as well. I now have what I call “cancer PTSD (post-traumatic stress disorder),” an underlying fear of recurrence. Every muscle spasm or un­explained twinge of pain causes me to wonder, “Is the cancer back?”

It turns out we’re all a little hyper-aware of our bodies post-treatment. And the periodic scans and blood work just serve to increase our anxiety at scan time. (I’m told that “scanxiety” never really goes away.) We ask ourselves, “What if?”

So how do we deal with cancer PTSD? How do we move on? For me, it’s about taking charge of the things I can control: eating a clean diet; get­ting plenty of exercise and learning to move again; and meeting my chemo side effects head-on with physical ther­apy, acupuncture, lymphatic drainage massage, and education. I’m doing everything I can to repair the damage done to my body and get stronger, making wellness a priority instead of a luxury.

So how do we deal with cancer PTSD? For me, it’s about taking charge of the things I can control.

My commitment to wellness and education also has included genetic counseling and testing to determine whether my siblings, my child, or I have a genetic predisposition for certain types of cancer. And it turns out that I do. I tested positive for the BRCA1 genetic mutation, and because I had already gone to battle with one form of pri­mary cancer and wasn’t interested in taking on another, I underwent a pro­phylactic bilateral mastectomy. It felt good to be doing something proactive rather than reactive this time.

While there is no doubt that cancer transforms us, making us a little skit­tish, there are things we can do to take control, to not feel so helpless. It’s all about controlling the things we can and letting go of those we can’t, taking each moment as it comes, and not “what-iffing” ourselves to death in the meantime. We’ve been given a second (or third or fourth) chance at life. Let’s make the most of it.

♦ ♦ ♦ ♦ ♦

During an emergency C-section, Joanna Montgomery’s doctor discovered a mass on her Fallopian tube that turned out to be stage IIIC gynecologic cancer. It was in this emotional maelstrom that Joanna began to chronicle her experiences of treat­ment, motherhood, and marriage in her blog, It’s Cancer, Baby. She has since become a regular contributor and columnist for the Huffington Post’s Healthy Living and CafeMom’s The Stir. She has appeared as a guest on Katie and participated in a 10-part mini-documentary series about her journey. Learn more about Joanna at HelloJoMo.com.

This article was published in Coping® with Cancer magazine, November/December 2013.

On the Line with Dr. Drew

Prostate Cancer from a Physician’s Point of View

by Jessica Webb Errickson

Celebrity Cancer Survivor

Board-certified internist, addic­tion medicine specialist, and TV and radio personality Dr. Drew Pinsky’s career has centered on helping others. He’s given relationship advice on his long-running radio show Loveline, helped people overcome addiction on VH1’s Celebrity Rehab with Dr. Drew, and he shares his insights into human behavior on HLN’s Dr. Drew On Call. Now after recovering from a radical prostatectomy, Dr. Drew is sharing his experience with prostate cancer to help other men facing the same diagnosis.

Dr. Drew was diagnosed with early-stage prostate cancer in 2011 after his wife urged him to see a doctor for a check-up. He learned that his PSA level had risen from a 1.5 to a 4 – still in the normal range but a significant jump none-the-less – and the central lobe of his prostate gland was slightly enlarged. His urologist initially began treating him for prostatitis (inflammation of the prostate), but Dr. Drew’s PSA remained elevated and his doctor began to suspect there might be more going on than just inflammation. So he ordered a biopsy to check for cancer.

All the while, Dr. Drew was think­ing that a biopsy was overkill. But his urologist’s intuition was spot-on, as the biopsy revealed a low-grade tumor. Dr. Drew had prostate cancer.

“When physicians get a diagnosis of cancer, it’s a little different. We know how to put it in the context of what kind of cancer we have.”

“My story is a good example of a physician’s judgment,” Dr. Drew tells Coping® magazine. “It was my inter­nist’s judgment or intuition that I should see the urologist. It was my urologist’s judgment that I should be biopsied. Based on current guidelines, they would have taken a much more conservative approach.”

With a family history of prostate cancer – his father and uncle both had the disease – Dr. Drew figured he would eventually come face to face with can­cer himself. But he didn’t expect it to happen to him in his early 50s. He cer­tainly found the diagnosis disturbing; however, as a doctor, he knew there was no need to go into panic mode.

“I guess when physicians get a diag­nosis of cancer, it’s a little different,” he explains. “We know how to put it in the context of what kind of cancer we have. I knew I could wait a while [to begin treatment], so I was planning to wait until I finished this incredible flurry of activity.”

Dr. Drew’s diagnosis came during what he considered one of the busiest periods of his life.

“I was doing the daytime show Lifechangers. I had just started work­ing at HLN. I was doing a season of Rehab with Dr. Drew,” he elaborates. “There was just so much going on.”

He and his doctor agreed to take the conservative path of active surveil­lance and monitor the tumor for growth rather than jump into treatment right away. But after a year of watchful waiting and two more biopsies, his doctor was no longer comfortable with the passive route. The tumor’s volume was becoming a concern, and he believed Dr. Drew’s prostate needed to be removed.

Trusting his doctor’s instincts and knowing that surgery was the best option for his particular case, Dr. Drew care­fully chose a surgeon and proceeded with radical robotic prostatectomy in July 2013.

Once again, he notes that his doctor’s judgment was on point, as his prostate was removed just before the cancer had a chance to spread.

“Lo and behold, there was a tiny tributary of tumor that was just within millimeters of the capsule,” he says. “You couldn’t see that on a biopsy.”

Overall, the surgery was a complete success, leaving Dr. Drew with no discernible side effects. And while he admits that recovery was brutal, he managed to get back to work only 10 days after the surgery.

Though he didn’t immediately go public with his cancer diagnosis, Dr. Drew always knew he would ultimately share his story.

“My whole reason for being in the media is to help people with things like this,” he says, “but I wanted to make sure it was a good story before I came out with it.”

Now that he is sharing his story, Dr. Drew’s goal is to reduce men’s anxieties about prostate cancer – from anxiety about being tested to the anxiety of facing treatment.

“There are many options [for treating early-stage prostate cancer], and you can generally take your time after diagnosis and select the best option for your particular circumstance,” Dr. Drew advises. “You do not have to rush. You should not rush. Although I’ve had a great outcome from prosta­tectomy, it’s intense. I really got a sense of why you’d want to pursue watchful waiting until surgery was absolutely necessary.”

After opening up about his diagnosis, Dr. Drew says the media interest in his story was extraordinary, even overwhelming. So much so, that he experienced some slight setbacks in recovery. But now he has healed from surgery, and he’s getting back to a normal pace of life (or at least what’s considered normal for Dr. Drew). “I’m still doing my show on HLN four nights a week, still hosting Loveline and doing podcasts. I still see patients,” he says. “And I’m getting more involved with prostate cancer than I ever thought I would!”

♦ ♦ ♦ ♦ ♦

You can watch Dr. Drew On Call on HLN Monday – Thursday at 9 p.m. ET. Keep up with Dr. Drew at DrDrew.com and on twitter.com/drdrew.

This article was published in Coping® with Cancer magazine, January/February 2014.

FDA Approves Mekinist in Combination with Tafinlar for Advanced Melanoma


Photo by Cancer Type

The U.S. Food and Drug Administration has approved Mekinist (trametinib) in combination with Tafinlar (dabrafenib) to treat patients with advanced melanoma that is unresectable (cannot be removed by surgery) or metastatic (late-stage).

In May 2013, the FDA approved both drugs as single agents to treat patients with unresectable or metastatic melanoma. Melanoma is the most aggressive type of skin cancer and is the leading cause of death from skin disease. The National Cancer Institute estimated that 76,690 Americans would be diagnosed with melanoma and 9,480 would die from the disease in 2013.

Mekinist and Tafinlar are used to block signaling in different sites of the same molecular pathway that promotes cancer cell growth. They are specifically indicated as a combination therapy for patients with melanoma whose tumors express gene mutations called BRAF V600E and V600K. The BRAF protein is involved in the regulation of normal cell growth, but it is mutated in approximately half of melanomas arising from the skin.

“Mekinist and Tafinlar are the first drugs approved for combination treatment of melanoma,” said Richard Pazdur, MD, director of the Office of Hematology and Oncology Products in the FDA’s Center for Drug Evaluation and Research. “Their development for combination use is based on the strong understanding of the biological pathways of the disease. This approval illustrates the value of continuing to study drugs in combination for clinical development.”

Results showed that 76 percent of participants treated with Mekinist in combination with Tafinlar had their cancer shrink or disappear that lasted an average of 10.5 months

The safety and effectiveness of Mekinist in combination with Tafinlar were demonstrated in a clinical trial of 162 participants with unresectable or metastatic melanoma with the BRAF V600E or V600K mutation, most of whom had not received prior therapy. Participants received either Mekinist in combination with Tafinlar or Tafinlar as a single agent until their melanoma progressed or side effects became intolerable.

Results showed that 76 percent of participants treated with Mekinist in combination with Tafinlar had their cancer shrink or disappear (objective response) that lasted an average of 10.5 months. In contrast, 54 percent of participants treated with Tafinlar as a single agent experienced objective responses that lasted an average of 5.6 months. Clinical trials are ongoing to determine whether Mekinist in combination with Tafinlar improves survival.

The most common side effects reported in participants receiving Mekinist in combination with Tafinlar included fever, chills, tiredness, rash, nausea, vomiting, diarrhea, abdominal pain, peripheral edema (swelling in the hands and feet), cough, headache, joint pain, night sweats, decreased appetite, constipation and muscle pain. During clinical testing, the incidence and severity of fever increased when Mekinist was used in combination with Tafinlar.

Serious side effects included bleeding, clot formation, heart failure, skin problems and eye problems. One of the serious side effects of Tafinlar - the development of a new squamous cell carcinoma of the skin - was reduced when the drug was used in combination with Mekinist; this is consistent with the biology of the effects of these two drugs on the targeted molecular pathway. The incidence of squamous cell carcinoma of the skin in this trial was 7 percent with the combination compared to 19 percent with single agent Tafinlar. Other clinically significant side effects include kidney injury.

Women of child bearing potential should be advised that Mekinist and Tafinlar can cause birth defects in a developing fetus. Men and women should also be advised that Mekinist and Tafinlar treatment may cause infertility.

The FDA approved the combination of Mekinist and Tafinlar under the agency’s accelerated approval program, which allows the FDA to approve a drug to treat a serious disease based on clinical data showing that the drug has an effect on a surrogate endpoint that is reasonably likely to predict a clinical benefit to patients. This program provides earlier patient access to promising new drugs while the company conducts confirmatory clinical trials. The FDA also reviewed this combination of drugs under the agency’s priority review because they demonstrated the potential to be a significant improvement in safety or effectiveness in the treatment of a serious condition.

Mekinist and Tafinlar are marketed by GlaxoSmithKline, based in Research Triangle Park, N.C.

♦ ♦ ♦ ♦ ♦

For more information:

FDA: Office of Hematology and Oncology Products
http://www.fda.gov/AboutFDA/CentersOffices/OfficeofMedicalProductsandTobacco/CDER/ucm091745.htm

FDA: Approved Drugs: Questions and Answers
http://www.fda.gov/Drugs/ResourcesForYou/Consumers/ucm054420.htm

NCI: Melanoma
http://www.cancer.gov/cancertopics/types/melanoma

CDC: Skin Cancer
http://www.cdc.gov/cancer/skin/

The FDA, an agency within the U.S. Department of Health and Human Services, protects the public health by assuring the safety, effectiveness, and security of human and veterinary drugs, vaccines and other biological products for human use, and medical devices. The agency also is responsible for the safety and security of our nation’s food supply, cosmetics, dietary supplements, products that give off electronic radiation, and for regulating tobacco products.

One Step at a Time

Reframing Intimacy After Cancer

by Melanie Davis, PhD

Wellness image

You may have crossed sexual intimacy off your priority list when you found out you had cancer. If you’re in active treat­ment, you may not feel like being sexual in the same ways you were before diag­nosis. After treatment, sex may still seem unappealing or even painful. This is all normal. But if you’re ready to bring sexual intimacy back into your life, you can work through the challenges – one small step at a time.

Defining Intimacy
Many people think of sexual intimacy as sexual in­tercourse or other genital stimulation resulting in orgasm, including any ac­tivities that lead up to it. However, if you broaden your definition of intimacy to include other pleasures that may or may not lead to orgasm, you can be sexually intimate without the pressure to engage in activities that aren’t com­fortable for you right now.

Sexually intimate activity can be goal oriented or non-goal oriented. Goal-oriented activities are considered complete when they end in orgasm. The problem with goal-oriented sexual inti­macy is that there’s a chance of failure if you or your partner do not experience orgasm. Failure can be frustrating, es­pecially if it happens on a regular basis.

You and your partner both need to agree
to change the way you define sex.

Author of Article photo

Dr. Melanie Davis

On the other hand, non-goal-oriented sexual activity can’t fail because there is no goal, other than pleasure. Orgasm may happen, or it may not. There is no pressure to do more than you can comfortably do, given your interests, level of desire, and physical capability. Examples of non-goal-oriented intimate activities include kissing, fondling, body rubbing, massage, watching or reading erotic material, taking a shower or bath together, recalling past sexual encoun­ters, envisioning future encounters, reliving your favorite dates, cuddling with or without clothes, holding hands, walking arm in arm, or engaging in any other activities that you enjoy. They can also include genital stimulation or pen­etration as long as you and your partner agree to stop the activity if it becomes anything other than pleasurable for either of you.

Reframing Intimacy
Changing your mindset from goal-oriented sex to non-goal-oriented sex doesn’t happen overnight. It takes some time to get used to the idea that even though you or your partner may be aroused, sexual activity could end prior to orgasm. Communication and trust are crucial because you need assurance that you will not be pressured to do more than is comfortable or desirable for you.

New Jersey-based “reinvention catalyst” Gailann Bruen, LCSW, suggests making changes in imaginary 1/16-inch increments – tiny steps so small you are almost guaranteed success.

“My husband and I always planned to travel, but when he developed heart issues, he chose not to fly,” Gailann says. “A friend advised us to create local memories together. It turned me around. Now I tell people, ‘Don’t focus on what you can’t do, but on small things you can do together.’”

Gailann suggests taking a drive, going out for coffee, and hugging and touching throughout the day. “Work within what’s possible, and focus on all the tender intimacies. Touch and sweetness are so important,” she adds.

Redefining intimacy in this way requires communication. You and your partner both need to agree to change the way you define sex. Start by discussing how you can maximize closeness and intimacy within your levels of energy, desire, and physical ability.

“Talk to your partner about what’s possible for you now,” says Melissa Donahue, LCSW, of the New Jersey Center for Sexual Wellness in Bedmin­ster, NJ. “If intercourse is off the table, say so, and make sure your partner agrees not to push for it. Once you know that your boundaries will be respected, you won’t have to be anxious when your partner touches you.”

It’s also important to make the most of what you have by eating a healthy diet, getting ample sleep, finding ways to reduce stress, following your doctor’s post-treatment plan, and getting regular exercise. Take pain medications 30 min­utes before you begin any type of sexual activity if you typically experience pain during intercourse, and arrange for inti­mate encounters to coincide with your most comfortable, energetic times of day.

You can put sexual intimacy back on your priority list once you realize you can do it on your own terms. Take things one step at a time – you can make changes in tiny, 1/16-inch increments.

♦ ♦ ♦ ♦ ♦

Dr. Melanie Davis is an AASECT-certified sexuality educator and partner in the New Jersey Center for Sexual Wellness (njsexualwellness.com) in Bedminster, NJ. She offers private consultation to teens and adults and specializes in sexual decision-making, health, pleasure, and sexual concerns related to aging and cancer. You can contact Dr. Davis by calling (908) 722-1632.

This article was published in Coping® with Cancer magazine, May/June 2013.

World Champion Drag Racer
“Fast Jack” Beckman

“Cancer hasn’t taken my drive away.”

by Jessica Webb Errickson

Celebrity Cancer Survivor

Professional drag racing champion Jack “Fast Jack” Beckman was just seven years old when he went to his first drag race. Immediately he was hooked. “I didn’t even have to see the cars,” Jack tells Coping®. “The first time I heard them when we were walk­ing up to the gate, the smells, the way it shook the ground – it just absolutely hooked every sense of mine.”

After his honorable discharge from the Air Force in 1988, Jack started rac­ing regularly at local tracks. From then on, all of his spare time and money went toward making his car faster.

In 2003, Jack was on the fast track to success, contending for the National Hot Rod Association Super Comp World Championship, when he noticed that he regularly wasn’t feeling well. Maybe it was a lingering cold. Or maybe it was just the stress of the competition, he thought. Either way, his symptoms kept coming back. It wasn’t until Jack went in for an MRI in May 2004 that the real problem was revealed – stage IIIB non-Hodgkin lymphoma.

“I kind of went numb,” Jack says. “I was 37 years old. I worked out four or five days a week. I ate healthy. I didn’t smoke. So it was the last thing on Earth that I expected.”

“You’ve got to fall back on your strengths and forget about your weaknesses when you’re going through something like this.”

Jack’s burgeoning racing career hung in the balance, but he refused to give up on it. “I was single at the time, and I just lived for my racing,” he explains. “That was absolutely my passion and my love, and I couldn’t imagine having to give that up, even going through cancer.”

Facing an aggressive eight-cycle chemo regimen, Jack says he felt like his head was spinning. “I’m a mechanic, a how-do-you-fix-it guy,” he says, “and I had no idea where to start. I didn’t even know what questions to ask.” It didn’t help that fears about how the treatments would affect his daily life lingered in his mind. “I was being told I wouldn’t be able to race and I wouldn’t be able to work,” he says.

However, when he sat down to talk with his doctor, Jack learned that those preconceived notions about chemo­therapy weren’t necessarily accurate. Though his doctor didn’t think it would be a good idea for him to work on cars and risk getting an infection, Jack was still able to continue working as a drag racing instructor, and more important, he was still able to race.

That’s not to say his course of treatment was a breeze. But Jack says, “You’ve got to fall back on your strengths and forget about your weaknesses when you’re going through something like this.”

Jack’s cancer went into remission in October 2004. Since then, he’s achieved more than he could ever have imagined, including winning the 2012 NHRA World Championship in the Funny Car division. “Cancer hasn’t taken my drive away,” he exerts, “I very much am – pardon the pun – driven to be the best that I can be for my team and for the sponsors I drive for.”

He also met his wife, Jenna, who gave him his two “little miracles,” Jason and Layla. “I never thought I was going to be a dad. That was another myth about the chemotherapy,” Jack says. “In some cases, it does render you sterile. In my case, it didn’t.”

Though Jack’s life has changed since cancer, cancer hasn’t changed Jack. He’s still the same ambitious, speed-loving guy he was 10 years ago. “What cancer did,” he explains, “is it made me a useful tool.”

Understanding the uncertainty that comes with facing chemotherapy, Jack teamed up with pharmaceutical company Amgen on its Chemotherapy: Myths or Facts campaign to help debunk common misconceptions of chemotherapy and encourage people with cancer to speak openly with their doctors to get the facts.

“I go in for my yearly checkups, and I make sure I stay on top of my health,” Jack says, “But from an experience standpoint, I think I can help people who are going through it now.”

And for those people, Jack asserts, “There is hope.”

♦ ♦ ♦ ♦ ♦

Learn more about the Chemotherapy: Myths or Facts campaign at ChemoMythsOrFacts.com. “It’ll arm you with the things you need to know,” Jack says. “Then you can go to your oncologist and ask logical, directed questions to get their opinion on what works best for you.”

This article was published in Coping® with Cancer magazine, November/December 2013.

Tips for Coping with Cancer from a 15-Year Survivor

by Jeannine Walston

In 1998 when I was diagnosed with a brain tumor at 24 years old, I knew nothing about cancer. Since then, with two awake brain surgeries and many other cancer therapies, my experiences have cultivated insights for optimal survivorship. Through my health and healing journey, I’ve garnered essential wisdom to thrive, and gained knowledge from extensive cancer-related professional work. My personal and professional work has even helped thousands of other cancer survivors along the way.

To cope with cancer, survivors and their caregivers need to gather reliable information, seek out helpful resources, and then take quality actions to support their health and well-being. This process takes time and a passionate commitment. Here are some tips to help you get started.

Make yourself a priority each day.

Embrace Self-Care Daily
Make yourself a priority each day. Breathe, relax, get adequate sleep, eat healthy, use mind-body support practices, optimize your spiritual and social connections, use stress-reduction techniques, and address your needs. Your health and overall wellness re­quires your awareness, attention, and positive actions.

Advocate for Yourself
Being informed and proactive about your care leads to the best possible outcomes. Conduct quality research on your disease through the most reliable experts and resources. Seek multiple opinions. Ask your healthcare team questions. Make informed decisions. Be open to changing directions when necessary.

Create a Support Team
Support from others is necessary when moving through cancer toward optimal health and heal­ing. Create a community of family members and friends to help you navigate the journey. Various types of resources are also avail­able by phone, in person, and online that can help you develop and organize support. Find what works for you. Be open to explor­ing new options. Connecting with others strongly supports healing and reminds you that you are never alone.

View Challenges as Opportunities
Life often presents challenges. But those challenges can in turn present opportunities. Healing opportunities are available to each one of us. In your healing process, evaluate yourself and your life. Get rid of anything that does not support your optimal wellness. Add improvements. Make better choices. If you need help, don’t be afraid to ask for it.

Choose Quality Providers
If possible, choose an oncologist with expertise in your specific type of cancer. Quality cancer care includes treating not only the cancer but also the whole person. Assemble a team of providers tending to each as­pect of your health and healing. Make sure that you get what you need. Integrative cancer care is meant to improve both your quality of life and your chance of survival.

Strive for Whole-Person Wellness
From the beginning of the healing process, cancer survivors can benefit from learning about and improving their whole-person wellness. For people with cancer, whole-person wellness includes taking care of their physical body, mind, and spirit, as well as their social and environmental health. Those components interact with and influence one another, interdependently shaping each cancer survivor.

Choose Love
Love yourself. The most funda­mental dimension to health and healing requires loving yourself. Love heals

♦ ♦ ♦ ♦ ♦

Brain cancer survivor Jeannine Walston shares information and inspiration to support optimal health and healing through her educational website JeannineWalston.com. Her services include working as a cancer coach and navigator, writing and consulting, and public speaking. In addition to her website, you can connect with Jeannine at facebook.com/JeannineWalstonHealing and twitter.com/JeannineWalston.

This article was published in Coping® with Cancer magazine, November/December 2013.

10 Ways to Find Meaning through Cancer

by Wendy G. Lichtenthal, PhD

Wellness image

Following a cancer diagnosis, many individuals report that their desire to live authentic and meaningful lives is heightened. Yet survivors often struggle with an altered sense of identity and meaning, feeling different and discon­nected. While not everyone with cancer has these types of concerns, it’s important to develop a toolbox that you can tap into as needed. If you are living with cancer, here are 10 ways to find meaning in your illness and in your life.

1 Validate your experience.
Before you embark on a search for mean­ing, acknowledge any distress you may be having. Living with cancer is not easy, and it’s normal to experience difficult emotions. Give yourself per­mission to feel, and be compassionate toward yourself.

2 Know that you have a choice in how you create meaning.
In his book Man’s Search for Meaning, psy­chiatrist Viktor Frankl highlighted that when facing life’s limitations, we have the freedom to choose our attitude about how we face a given situation. We can decide if it’s a good or bad thing, a sit­uation from which we are beaten or something over which we triumph. How you decide to face a given situation can be a source of meaning or even pride.

3 Nurture your meaning-making system.
Meaning is made through our beliefs about ourselves, about others, and about how we think the world works. Our beliefs about our ability to handle things greatly affect our experience of them. If you have entered the cancer experience believing you aren’t able to handle it, remind yourself of the chal­lenges you’ve already faced and how you got through them. Look at the dif­ficult moments you’ve had since your diagnosis, and give yourself credit for managing what may have been very challenging emotions.

Author of Article photo

Dr. Wendy Lichtenthal

4 Revise the meaning of cancer.
Not only are beliefs about our ability to cope important, but beliefs about what the cancer means (such as viewing it as a punishment) can have a great influence too. Acquiring a differ­ent perspective of your cancer is not meant to promote “turning lemons into lemonade” (although some people think about it this way), but rather to acknowl­edge the power you have to define an event in your life. So ask yourself, have you learned anything important through your cancer experience? Has it affected your values or priorities?

5 Be the author of your story.
It is human nature to want to make sense of unexpected life events; there­fore, “Why me?” is a natural response. But you (and you alone) are the author of your story. How do you want your story to unfold? What is the title of this chapter in your life? Find a way to make this experience fit into your life’s story.

6 Consider your valued sources of meaning.
What makes you want to get out of bed each morning? Is it a special relationship? Someone you love? A cause about which you are passionate? A beautiful sunrise? Power­ful music? Have you lost touch with these things since your diagnosis? Re­connect with your sources of meaning, maybe even in new ways. For example, a teacher who is no longer teaching children in a classroom might find other ways to teach, perhaps by offer­ing guidance to loved ones.

7 Explore and reconnect with what makes you you.
Our roles, traits, relationships, and values define us. How did you define yourself before cancer? If you’ve become disconnected from activities and relationships that remind you who you are, be deliberate about reconnecting with them.

8 Focus on being, not just doing.
If it’s become challenging to do some of the things you were able to do before diagnosis, focus more on just being – receiving the gifts of life, such as love, beauty, and humor – and on creating quiet, meaningful experiences to remind you that you are, in fact, alive.

9 Redefine self-care.
If you define yourself by how you serve others, a cancer diagnosis can be derailing. Consider for whom you are ultimately responsible, and be sure to place your­self at the top of the list. To take care of others, you must first take care of your­self; the “put on your own oxygen mask before you assist others with theirs” metaphor applies here.

10 Don’t underestimate the power of support.
Whether you connect with friends, family, or other cancer survivors, having someone who can listen to your feelings can be in­valuable. In addition, a mental health professional can help you reconnect with sources of meaning and explore how you would like cancer to fit into your life using approaches like Meaning-Centered Psychotherapy, which was developed by Dr. William Breitbart and colleagues at Memorial Sloan-Kettering Cancer Center.

While the media often focuses on those who have found meaning and growth after cancer, it’s easy to overlook the fact that there is usually a process (some­times a lengthy one) that leads to such positive out­comes. If you’re struggling with finding meaning in your life, don’t assume you are alone or that where you are is a permanent state. When so much is beyond your control, the ability to create meaning is something you do have control over.

♦ ♦ ♦ ♦ ♦

Dr. Wendy Lichtenthal is an assistant attending psychologist in the department of Psychiatry and Behavioral Sciences at Memorial Sloan-Kettering Cancer Center and assistant professor of psychology in psychiatry in the department of Psychiatry at Weill Cornell Medical Center in New York, NY. Her work focuses on developing adaptations of meaning-centered psycho­therapy for people with cancer.

This article was published in Coping® with Cancer magazine, November/December 2013.

Society of Gynecologic Oncology Releases List of Commonly Used Tests and Treatments to Question

Group aims to encourage physician and patient conversations by identifying five tests or procedures to question, highlighting potentially unnecessary—sometimes harmful—care in gynecologic oncology


Photo by Cancer Type

The Society of Gynecologic Oncology (SGO) has released a list of specific tests or procedures that are commonly ordered but not always necessary in gynecologic oncology as part of Choosing Wisely®, an initiative of the ABIM Foundation. The list identifies five targeted, evidence-based recommendations that can support conversations between patients and physicians about what care is really necessary.

SGO’s list identified the following five recommendations:

  • Don’t screen low risk women with CA-125 or ultrasound for ovarian cancer.
    CA-125 and ultrasound in low risk, asymptomatic women have not led to diagnosis of ovarian cancer in earlier stages of disease or reduced ovarian cancer mortality. False positive results of either test can lead to unnecessary procedures which have risks of complication.
  • Don’t perform Pap tests for surveillance of women with a history of endometrial cancer.
    Pap testing of the top of the vagina in women treated for endometrial cancer does not improve detection of local recurrence. False positive Pap smears in this group can lead to unnecessary procedures such as colposcopy and biopsy.
  • Don’t perform colposcopy in patients treated for cervical cancer with Pap tests of low grade squamous intraepithelial lesion (LGSIL) or less.
    Colposcopy for low grade abnormalities in this group does not detect recurrence unless there is a visible lesion and is not cost effective.
  • Avoid routine imaging for cancer surveillance in women with gynecologic cancer, specifically ovarian, endometrial, cervical, vulvar and vaginal cancer.
    Imaging in the absence of symptoms or rising tumor markers has shown low yield in detecting recurrence or impacting overall survival.
  • Don’t delay basic level palliative care for women with advanced or relapsed gynecologic cancer, and when appropriate, refer to specialty level palliative medicine.

There is now an evidenced based consensus among physicians who care for cancer patients that palliative care improves symptom burden and quality of life. Palliative care empowers patients and physicians to work together to set appropriate goals for care and outcomes. Palliative care can and should be delivered in parallel with cancer directed therapies in appropriate patients.

With the release of these new lists, the campaign will have covered more than 250 tests and procedures that the specialty society partners say are overused and inappropriate, and that physicians and patients should discuss.

“It is essential that women uniformly receive early access to the health care providers who are best qualified to care for women with gynecologic cancer. The SGO has been in the forefront of setting measurable standards of high quality care for women diagnosed with gynecologic cancer,” said SGO President Barbara A. Goff, MD. “The Choosing Wisely recommendations for gynecologic oncology released today provide valuable information to help patients and physicians discuss treatment options that will impact survival and quality of life.”

SGO created a ”Cost of Care” workgroup in response to the ABIM Foundation’s Choosing Wisely campaign. The workgroup is comprised of representatives from the society’s clinical practice committee that is made up of gynecologic oncologists, medical oncologists, nurse practitioners, pharmacists, and other allied health providers. A literature review was conducted to identify areas of overutilization or unproven clinical benefit and areas of underutilization in the presence of evidence-based guidelines. The workgroup then evaluated these data and presented a list of five topics to the membership of the clinical practice committee and then to the SGO Board of Directors for approval. The selected five interventions were agreed upon as the most important components for women with gynecologic malignancies and their providers to consider.

In addition to SGO, more than 30 other specialty society partners are releasing Choosing Wisely lists over the next several months. To date, over 80 national and state medical specialty societies, regional health collaboratives and consumer partners have joined the conversations about appropriate care. With the release of these new lists, the campaign will have covered more than 250 tests and procedures that the specialty society partners say are overused and inappropriate, and that physicians and patients should discuss.

The campaign also continues to reach millions of consumers nationwide through a stable of consumer and advocacy partners, led by Consumer Reports - the world’s largest independent product-testing organization - which has worked with the ABIM Foundation to distribute patient-friendly resources for consumers and physicians to engage in these important conversations.

♦ ♦ ♦ ♦ ♦

To learn more about Choosing Wisely and to view the complete lists and additional detail about the recommendations and evidence supporting them, visit www.ChoosingWisely.org.

Sometimes …

by Lori C. Byington

 
Inspiration image

Sometimes I forget
Chemo took my hair.
Sometimes I forget
My body doesn’t work as it should.
Sometimes I forget
I am one out of eight,
Or is it six?
Sometimes I forget,
And then I glance in a mirror
As I sashay by …
And I remember.

♦ ♦ ♦ ♦ ♦

Breast cancer survivor Lori Byington is as­sistant professor of English and director of the Speaking Center at King University in Bristol, TN.

This article was published in Coping® with Cancer magazine, November/December 2013.

Prepare, Prevent & Protect

Reduce Your Risk of Infection during Chemotherapy


Knowledge image

Clean hands help prevent infections.

People with cancer who are treated with chemo­therapy are more likely to get infections through everyday activities or from healthcare settings. One out of every ten people with cancer who re­ceives chemotherapy gets an infection that requires a hospital visit.

What is an infection?
You get an infection when germs enter your body and multiply, causing illness, organ and tissue damage, or disease. Bacteria and viruses cause infections. You can get bacteria from the air, water, soil, or food during the course of your medical treatment. Most bacteria come from your own body. Common bacterial infections include pneumonia, bronchitis, and ear infections. Viruses are passed from one person to another. Common viral infections include the common cold, herpes, and the flu.

How can I prevent infections during chemotherapy?
The immune system helps your body protect itself from getting an infection. Cancer and che­motherapy can damage this system, reducing your numbers of infection-fighting white blood cells and making it harder for your body to fight infections. The following tips can help you reduce your risk of developing an infection.

Prepare: Watch Out for Fever
If you get a fever during your chemotherapy treatment, it’s a medical emergency. Fever may be the only sign that you have an infection, and an infection dur­ing chemotherapy can be life threatening. You should take your temperature any time you feel warm, flushed, chilled, or not well. If your temperature is 100.4°F (38°C) or higher for more than one hour, or 101°F (38.3°C) or higher for any length of time, call your doctor right away, even if it happens in the middle of the night. You should also take the following precautions:

  • Find out from your doctor when your white blood cell count is likely to be the lowest, since this is when you’re most at risk for infection.
  • Keep a working thermometer in a convenient location and know how to use it.
  • Keep your doctors’ phone numbers with you at all times and know what number to call when the office is open and closed.

If you have to go to the emergency room, tell the person checking you in that you are undergoing chemotherapy. If you have a fever, you might have an infection. This is a life-threatening con­dition, and you should be seen quickly.

You should take your temperature any time you feel warm, flushed, chilled, or not well.

Prevent: Clean Your Hands
Clean hands help prevent infections. Many diseases are spread by not cleaning your hands, which is especially dangerous when you’re getting chemotherapy treatment because your body may not be able to fight off infections like it used to. You and anyone who comes around you, including all members of your household, your doctors, and nurses, should clean their hands fre­quently. Don’t be afraid to ask people to clean their hands. Use soap and water to wash your hands. If soap and water aren’t available, use an alcohol-based hand sanitizer. Be sure to clean your hands at these times:

  • before, during, and after cooking food
  • before you eat
  • after going to the bathroom
  • after changing diapers or helping a child use the bathroom
  • after blowing your nose, coughing, or sneezing
  • after touching or cleaning up after your pet
  • after touching trash
  • before and after treating a cut or wound or caring for your catheter, port, or other access device

Protect: Know the Signs and Symptoms of Infection
When your white blood cell counts are low, you must take infection symptoms seriously. Infection during chemotherapy can lead to hospitalization or death. Call your doctor right away if you notice any of the following signs and symp­toms of an infection:

  • fever (this is sometimes the only sign of an infection)
  • chills and sweats
  • change in cough or a new cough
  • sore throat or new mouth sore
  • shortness of breath
  • nasal congestion
  • stiff neck
  • burning or pain with urination
  • unusual vaginal discharge or irritation
  • increased urination
  • redness, soreness, or swelling in any area, including surgical wounds and ports
  • diarrhea
  • vomiting
  • pain in the abdomen or rectum
  • new onset of pain

Find out from your doctor when your white blood cell count is likely to be the lowest. This usually occurs between 7 and 12 days after you finish each chemotherapy dose and may last up to one week.

What should I do if I think I have an infection?
Call your doctor right away, even if this happens in the mid­dle of the night. This is considered an emergency. Don’t wait until morning. Make sure you know what number to call during your doctor’s office hours, as well as after hours.

♦ ♦ ♦ ♦ ♦

For more information, action steps, and tools to help reduce the risk of developing potentially life-threatening infections during chemotherapy treatment, visit PreventCancerInfections.org.

Source: Centers for Disease Control and Prevention, www.cdc.gov

This article was published in Coping® with Cancer magazine, May/June 2013.

Working through Cancer


Wellness image

Returning to the workplace after cancer can be both rewarding and challenging. Here, experts at the University of Alabama at Birmingham offer tips to help cancer survivors make a smooth transition as they return to work.

Before heading back to the office, cancer survivors and their doctors must consider their type of treatment, stage of cancer, overall health, and kind of work. Teri Hoenemeyer, director of edu­cation and supportive services at the UAB Comprehensive Cancer Center, says employers are required to support a survivor’s decision.

“Cancer is classified as a disability, and working survivors have protections and rights under the Americans with Disabilities Act, so employers will need to provide time for doctor’s appointments and treatments that may go above and beyond Family Medical Leave,” Teri elaborates. “If they are suffering from fatigue or have special needs, employers will need to consider making reasonable accommodations.”

"Work can be positive in that it provides social support and access to resources and people that can help get you through the disease."

Five years ago, Mary Gibson, RN, associate vice president of Physician Services and UAB Connect for the UAB Health System, was diagnosed with stage IIA invasive ductal carci­noma. Mary underwent chemotherapy, a lumpectomy, and radiation; and she continued to work at UAB through it all.

“Cancer is of course your primary focus when you are going through it, but doing my job provided me that sense of normalcy – something to think about besides all of the treatments,” Mary explains.

While Mary says that working through cancer can be exhausting, she says it can be done. Mary offers these tips for fellow survivors:

  • Take it all in one bit at a time – one day, one treatment, one surgery, one radiation session.
  • Though it can be difficult, stay positive.
  • Understand that cancer may take away your hair, your energy, and control of your schedule, but it can give back many new things.

“Extra rest, a healthy diet, physical activity, and low stress are all important factors to the survivor at work,” Teri adds. “Take time out of the day to do something that focuses on managing stress and anxiety; it could be medita­tion, sitting still with some music, or taking a walk.

“Working through cancer, naturally you will have additional stress, but work can be positive in that it provides social support and access to resources and people that can help get you through the disease,” she explains.

Mary notes that her coworkers were a fabulous support system, offering notes of encouragement, a few jokes, and even some smiles.

“Cancer absolutely changes your life, but I can truly say I gained much more than I could ever have imagined following my diagnosis,” Mary says. “It opened a world with new friends and love; a world with laughter and ‘good’ tears; a world of ‘yes, I really do appre­ciate today’ and ‘oh, look, the sky is so blue’; and a new world of thankfulness for new opportunities.”

♦ ♦ ♦ ♦ ♦

This article was published in Coping® with Cancer magazine, November/December 2013.

Communicating with Your Doctor after an Ovarian Cancer Diagnosis

by Stephanie V. Blank, MD

Photo by Cancer Type

Every doctor can write a prescrip­tion, but not every doctor is an expert at communication. It is much easier to teach anatomy and pathology than it is to teach the best way to tell a woman she has ovarian cancer. And while many physicians are born with the skills and social sense necessary to properly deliver news like this, just as many are not.

Better communication with your doctor will result in improved care and greater satisfaction with that care. Here, we will look at ways that you can take matters into your own hands.

Set the Stage for Communication
Letting your doctor know you have thought enough about communication to want to discuss it is an important first step toward improving communi­cation between you and your doctor. If your doctor has given you your diagno­sis while you’re in the exam room, ask him or her if you can dress, sit down in an office, and include your significant other in the conversation. Or if you have gotten the news but are in no shape to process it, tell your doctor that you are overwhelmed and ask when you can come back to discuss the diagnosis and what it means for your future.

The First Questions
First, find out if your doctor is a gynecologic oncolo­gist. If not, ask if you should see one. Gynecologic oncologists are physicians who are focused on the care of women with female-specific cancers. They can perform surgery, give chemotherapy, follow you long term, and will best be able to help you make important treat­ment decisions.

Your questions should be direct and clear. Don’t assume your doctor can read between the lines.

Author of Article photo

Dr. Stephanie Blank

Another early question to ask after an ovarian cancer diagnosis is whether there is a role for surgery in your treat­ment plan. Don’t assume you are or are not a candidate for surgery – ask why or why not.

Now What?
If your doctor recom­mends chemotherapy or radiation, what does this mean for you? Can you go to work? Go to the gym? Travel? Have sex? Your doctor can clear up any mis­conceptions you might have. If there are activities or upcoming events that are very important to you, voice this to your doctor. It might be possible to tailor your treatment to fit your needs.

Clinical Trials
You may want to ask your doctor about clinical trials. Often, your best chance of being eligible for clinical trials is before you start treat­ment. If your doctor does not have a trial for you but you are interested in learn­ing more, ask your doctor’s opinion on whether he or she knows of any other trials out there that you should consider.

Speak Up
There is a natural tendency for many of us to want to be “good patients” and not complain. When your doctor asks how you’re doing, you may feel inclined to reply with, “Just fine.” This is a common exchange between doctors and women undergoing ovarian cancer treatment, but they both know this answer isn’t true. Let your doctor know if you’re experiencing troubling side effects. Your visit will go more smoothly if your doctor doesn’t have to tease out of you that you haven’t gone to the bathroom since your last treatment.

You need to think about how you speak to your doctor. Your questions should be direct and clear. Don’t assume your doctor can read between the lines. If you want to know whether you can attend a wedding, ask about that spe­cifically; don’t just ask, “How am I doing, Doc?” It sounds simple, but it isn’t always as easy as it should be due to nerves, time pressure, an impersonal setting, different communi­cation styles, and the rush of emotions that come over you every time you walk into that office. You may feel silly talking to your doctor about your social calendar, but your doctor would like nothing more than to alleviate your stress with a definitive answer.

You will likely receive more satis­faction from your care if communication with your doctor is two-way. Don’t be afraid to seek this type of communica­tion. You may have to work for it, but it is worth it.

♦ ♦ ♦ ♦ ♦

Dr. Stephanie Blank, a gynecologic on­cologist, is an associate professor at NYU Langone Medical Center in New York, NY. She is chair of the Communications Committee of the Society of Gynecologic Oncology and strives to make sure that the women under her care believe they can communicate with her.

This article addresses issues specific to ovarian cancer, but many of these concepts are universal.

This article was published in Coping® with Cancer magazine, November/December 2013.

The Dish on Good Nutrition for Cancer Survivors

by Cara Anselmo, MS, RDN, CDN

Wellness image

Nutrient-rich homemade smoothies are good options if you have mouth sores or a sore throat from chemotherapy or radiation.

Maintaining good nutrition during and after cancer treat­ment is essential for recovery. A healthy diet can help boost energy, regulate body weight, fight infection, and decrease treatment-related side effects. It also can (and should!) be a delicious part of your daily life.

While some nutrition guidelines are practical for almost everyone to follow, keep in mind that every body is different. Depending on where you are in your treatment, the type of can­cer you have, and what your immediate and long-term goals are, your best approach to eating well might be very different from that of the person next to you in the doctor’s office.

For most people, a primarily plant-based diet that includes a variety of vegetables, fruits, whole grains, and legumes, adequate protein, and healthy fats is ideal. Limit foods like beef, butter, and white flour. Instead, reach for foods like beans, olive oil, and whole wheat more often.

You may have heard the phrase “sugar feeds cancer.” It’s a hot topic, but it’s not the whole truth. Eating too much sugar – or too much food, period – can lead to a condition called insulin re­sistance, as well as unnecessary weight gain. Both outcomes may in­crease cancer-related risks. It’s generally a good idea to limit added and refined sugars, like those in sodas, cakes, and even some fruit-flavored yogurts. But don’t worry about the sweetness you enjoy from a cup of berries or a melon. And if you feel like indulging in a cookie now and again, it’s OK. Think moderation instead of elimination.

For most people, a primarily plant-based diet that includes a variety of vegetables, fruits, whole grains, and legumes, adequate protein, and healthy fats is ideal.

Author of Article photo

Cara Anselmo

If you’re struggling to keep weight on or regain the weight you lost during or after treatment, you might need to liberalize your diet more than if you’re trying to lose or maintain weight. Try eating ice cream. It’s very calorie dense and tends to be easy to eat – a blessing if you’re trying to keep your weight up (but not if you want to lose weight).

Hydration is important. Drinking plenty of water (usually about one and a half to two liters daily) is the best natural detox there is. If getting enough to drink is a challenge, consider eating soups, broths, and fresh or frozen fruits and vegetables to increase your fluid intake. Just as you wouldn’t expect to get all your nutrients from only one meal, spread out your fluid intake and sip water throughout the day.

In most cases, it’s best to get nutri­ents from whole foods rather than from dietary supplements. Think kiwis and broccoli instead of a vitamin C tablet. It’s all too easy to get excessive amounts of certain nutrients from supplement pills, which can be just as hard on your body as not getting enough nutrients. In addition, certain dietary supplements may actually interfere with cancer treat­ments. Always talk to your dietitian or doctor if you’re thinking about taking any dietary supplement – even if it seems safe and simple.

Side effects from treatments vary, so there’s no cookie-cutter approach to preventing them. If you’re feeling nauseated, ginger tea (hot or iced) and plain toast may help soothe your stom­ach. You’ll want to avoid strong odors (from food and in general), greasy foods, and very large meals. If you have mouth sores or a sore throat from chemo- therapy or radiation, consider sipping nutrient-dense liquids, like homemade shakes and smoothies, through a straw. Avoid foods that are spicy or acidic, like orange juice and tomato sauce. Changes in taste can be troubling, but don’t force yourself to eat a particular food if it tastes terrible to you. Replace it with something more palatable.

Fatigue is another common side effect of cancer treatment, so be sure to have easy-to-prepare foods on hand. Recruit help from family and friends. Let them know what would benefit you most, whether it’s your favorite home­made pasta dish, bags of fresh farmers market vegetables, or a blender for making smoothies.

As with all things in life, make sure you see both the forest and the trees when it comes to healthy eating with cancer. In other words, don’t lose sight of the big picture. Your joy, health, and best possible quality of life matter most.

♦ ♦ ♦ ♦ ♦

Cara Anselmo is a nutritionist at the Evelyn H. Lauder Breast Center of Mem- orial Sloan-Kettering Cancer Center in New York, NY. She is also a certified yoga instructor who has been actively teaching for more than six years. You can follow her at twitter.com/CaraAnselmo.

This article was published in Coping® with Cancer magazine, November/December 2013.

Journaling Cancer in Words and Images

by Harriet Claire Wadeson, PhD, LCSW, ATR-BC, HLM

Inspiration image

Cancer imposed its own special kind of helplessness as I was cut open and parts were either removed or irradiated and blasted with chemicals that destroyed cells and interfered with my physiological func­tioning. People turn to a number of outlets under this kind of duress – religion, meditation, music. For me, I needed to do something, to be active to oppose my resignation to what was imposed upon me. I needed to assert my personhood as I passively underwent frightening and debilitating procedures. Writing and making art were my saviors in times of trouble or pain in the past, so it was only natural for me to turn to them to help me through cancer.

I began a journal the day I was diagnosed. I am not sure what I had in mind, but I think it was to anchor myself during the heavy buffeting for which I knew I was headed. What I have found is that had I not written about it, I would have forgotten much of what I experienced. So, unintention­ally, the journal has been a kind of record keeping as well.

Writing and painting – even if about the pain in your current reality – lifts you beyond that reality into a world of your own creation.

I took my paints with me to the hospital when I had surgery, my first treatment shortly after I was diagnosed, but I was unable to use them the few days I was there. I started painting soon after coming home, however, beginning with plants and flowers friends brought me. My first cancer picture was of my hand taped with the tube infusing me with chemicals and the pole with the beeping chemo machine behind it, which I painted in my first chemotherapy session.

I was faithful to writing in my journal and tracing my cancer journey in images throughout my treatment. I found these two modalities to be very different experiences, not only in how I was expressing myself, but also in what I was expressing. In telling my story in these two different modes of expression simultaneously, I found that each enhanced the other.

The art I created was relatively quick, made with simple materials. Most of the time I was working on it, I was too depleted for more extended projects. The same is true of the writing. So much of the material is raw – spontaneous journal entries and pictures made when I was feeling very ill. In a way, however, these spontaneous expressions of what was happening to me – and my resul­tant feelings – are perhaps more genuine than refined writing and art making would be.

I think creative expression is very important for those living in dread of a possibly fatal illness and undergoing harsh, debilitating medical treatment. Writing and painting – even if about the pain in your current reality – lifts you beyond that reality into a world of your own creation.

There is a strange paradox here. Although the focus is on what may be suffering, perhaps even the reliving of an excruciating experience, that focus is enveloped by another focus, which is the creative experience itself. While writing about nausea from chemotherapy, for example, I was also selecting the best words to describe it. Sometimes I could find satisfaction and even plea­sure in pairing just the right words. This same sort of creative involvement was even more intense in making art. In­stead of words, I would be selecting and composing images and enjoying the sensual pleasures of manipulating materials with the stroke of a paintbrush or of applying glossy satin ribbons. So, although writing or painting about nausea, I was enjoying my own creative activity. Afterward, I would look at my creation and smile. Yes, I would think, that is what it is like.

What’s more, creative self-expression can affirm your own special person­hood, what in you is strong and unique. You are not simply a cipher in an unending march of patients into the operating room, the radiology depart­ment, the chemotherapy suite. You are expressing your own individual response to the tsunami that has wrecked your life and the flood that is drowning so much of it.

I feel very fortunate that both writing and making art were already old friends when the tsunami hit. I did not have to look for them; they were al­ready by my side to help keep me afloat through the ebbs and flows of the strong tides of cancer that washed over me.

♦ ♦ ♦ ♦ ♦

Uterine cancer survivor Harriet Claire Wadeson is a pioneer in art therapy, cur­rently directing the Art Therapy Certificate Program at Northwestern University. This article is adapted from her book Journaling Cancer in Words and Images: Caught in the Clutch of the Crab, courtesy of Charles C. Thomas Publisher, Ltd., Springfield, IL.

This article was published in Coping® with Cancer magazine, November/December 2013.

Facing the Challenges of Cancer as a Young Adult

How You Can Make the Most of Your Time in Treatment

by Helen L. Coons, PhD, ABPP, and Johnathan B. Sataloff

Photo by Cancer Type

Here you are, 18 to 24 years old. You were in college, graduate school, or your first job and enjoying your independence when cancer hit. Now you’re back at home with your parents, dealing with all the things that accompany a cancer diagnosis. You’re probably feeling out of touch with your goals and struggling to relate to your friends. The following suggestions might help you handle this difficult transition and make the most of your time in treatment.

1 Disclose your diagnosis when you’re ready.
It’s your decision whom you tell about your cancer and when. Right after diagnosis, it’s impor­tant to rely on trusted friends and family for support, and not worry about telling everyone at the same time.

2 Ask for help.
Your newfound in­dependence may be important to you, but it’s difficult to get through can­cer treatment alone. Sometimes you may need practical help with everyday tasks like showering, getting dressed, walking, or cleaning a port or PICC line. Other times you may need emotional support. Family members, friends, co­workers, your oncology team, mental health professionals, and even other young adults with cancer can provide support when you need it and will back off when you don’t.

3 Add structure to your day.
Unless you’re recovering from a procedure or your white blood cell counts are down, make a point each day to get out of bed at a regular time, take a shower, and set realistic goals to leave the house.

Author of Article photo

Dr. Helen L. Coons

4 Keep some familiarity in your life.
If you’re in college, try to continue taking classes on campus or online. Lighten your credit load or take classes that aren’t for credit if neces­sary. If you have a job, ask if you can work from home or come to the office on a flexible schedule that will allow you to take time off for chemotherapy and work more hours between cycles. If you’re unable to take classes or work even part time, enjoy a hobby, take an art class, or volunteer in your commu­nity. This will give you something to focus on other than your cancer, allow you to interact with your peers, and help keep your mind sharp.

5 Stay physically active, with your doctor’s permission.
Physical activity, particularly aerobic exercise (walking, biking, dancing, using elliptical or rowing machines) decreases stress and anxiety, improves sleep, helps with concentration, and improves body image. Weight lifting, Pilates, and yoga can improve your muscle mass, core strength, balance, and overall well-being.

6 Stay connected to friends.
Instead of avoiding friends during cancer treatment, stay in touch through social media, text messages, or video chat if you are unable to hang out in person.

Author of Article photo

Johnathan Sataloff

7 Decide if dating during cancer is right for you.
Some young adults with cancer maintain relationships while others are reluctant to start dating because of treatment-related side effects such as hair loss, fatigue, and decreased sexual energy, as well as worry about disclosing their cancer to a date. Dating during cancer is a personal decision. If you feel ready to date, go for it! For tips on how, visit copingmag.com/dating_tips.

8 Be patient.
Fatigue, trouble con­centrating, and frustration with being off track from your goals are normal. Don’t push yourself when your body needs a break. Setting small goals can help you feel productive. Find ways to relax – watch TV shows or movies, read books, exercise, listen to music, write about your experience, or use mindful­ness and guided imagery techniques.

9 Make plans for the future.
Can­cer gives you a lot of time to think. If you’re in school, use your time in treatment to research future internships, summer programs, or jobs. Finding options that fit your goals gives you something to work toward. If you’re already working, this time can be used for developing a new skill or studying for a new certification.

10 Try a support group.
Connect­ing with other young adults with cancer can be reassuring and may re­duce feelings of isolation. If you can’t locate a support group in your commu­nity, talk to your cancer team about the possibility of starting one yourself. If in-person groups aren’t your thing, try connecting in online chat rooms for young adults with cancer.

♦ ♦ ♦ ♦ ♦

Dr. Helen L. Coons is a breast cancer survivor and board-certified clinical health psychologist who has specialized in psycho­social oncology for 30 years. She is the president and clinical director of Women’s Mental Health Associates in Philadelphia, PA. Johnathan Sataloff is a non-Hodgkin lymphoma survivor and a senior pre-med student at Amherst College in Amherst, MA.

This article was published in Coping® with Cancer magazine, November/December 2013.

Whatever Moves You

Tools for Getting Started with an Exercise Routine

by Laura Q. Rogers, MD, MPH, FACP, FACSM

Wellness image

Cancer and its treatment can feel like a physical battle wreaking havoc on your body. Fortunately, regular exercise can help to prevent or reverse some of the negative side effects you may be experiencing.

While the benefits of exercise may vary depending on each person’s cancer type and treatment regimen, there are some general guidelines most all cancer survivors can follow to start seeing ben­efits. The current recommendation is that survivors aim for 150 minutes per week of moderate intensity aerobic exercise (such as a brisk walk) along with exer­cises that improve balance, flexibility, and muscle strength.

If regular exercise has never been your thing, don’t be discouraged. Just as you need the right tools for activities like cooking and gardening, you also need the right “tools” for getting started with an exercise routine.

Realistic Goals
Build your confidence by starting with a short-term goal that you know you can achieve. Record your exercise in a journal so you can track your progress. Choose an activity you enjoy, and invite family members and friends to exercise with you to boost the enjoyment you get from it and to help you stay on track. Mark appointments for exercise on your calendar, and try to incorporate a little more exercise into your schedule each week. Keep a log of how you spend your time during a typi­cal week; then decide which sedentary activities you can give up to make more time for exercise. Avoid sitting for long periods; get up and move around every hour you’re awake. Be creative about how you work physical activity into your schedule. Don’t forget to congratulate yourself when you make time for exer­cise and reach your goals.

Build your confidence by starting with a short-term goal that you know you can achieve.

Author of Article photo

Dr. Laura Rogers

A Positive Mindset
Replace your negative thoughts about exercise with positive ones. Think about the exercise benefits that are the most important for you, and about how you’ll feel when you attain them. Think of exercise as a mandatory part of your day-to-day life, similar to taking medication or brushing your teeth. If you are busy caring for your family, remind yourself that exer­cise can make you stronger and better able to care for your family, now and in the future. Once you have been exercis­ing regularly for a while, there is a good chance you will experience the benefits you’ve been hoping for, which will motivate you to continue.

A Doctor-Approved Fitness Program
If you are currently receiving cancer treatment, talk with your doctor about the safety of exercise. If your blood counts are low, avoid contact sports, skip out on activities that carry an increased risk of infection (such as swimming), and do not exercise beyond what you can do comfortably. If you’re fatigued, opt for frequent, short bouts of exercise rather than longer sessions done less frequently. Take advantage of your good days, but understand that you may not be able to do as much on difficult days. Listen to your body and adjust as necessary. The rigors of cancer treatment can re­duce your physical endurance, so don’t be discouraged if you can only do a little exercise at first.

Proper Equipment and Precautions
Be mindful of your general condition. Wear the proper clothing and shoes when exercising, and drink plenty of fluids to avoid dehydration. Start slow and gradually increase length and duration of exercise. Talk with your doctor before you start an exercise program, especially if you had cancer treatment that weakened your heart or if you have a significant medical condition (such as diabetes, heart disease, or lung disease). If you have osteoporosis or cancer metastasis, avoid activities that involve high impact movements, sudden and extreme twisting, or an increased risk of falling. If you have lymphedema, wear a com­pression garment during weight lifting.

The benefits of exercise are far too great for most can­cer survivors to consider regular exercise an op­tional activity. The goal is to exercise at least 150 min­utes per week at a moderate intensity, but don’t be discour­aged if you are unable to meet this goal right away. Even one hour of physical activity per week is beneficial. Any exer­cise you can do is good for your health.

♦ ♦ ♦ ♦ ♦

Dr. Laura Rogers is a professor at the University of Alabama at Birmingham. She is also an internal medicine physician in UAB’s weight management program and does research on exercise adherence and benefits after cancer diagnosis.

This article was published in Coping® with Cancer magazine, November/December 2013.

Coping Together
When the Diagnosis is Metastatic Breast Cancer

by Hoda Badr, PhD

Breast Cancer image

If you’ve been diagnosed with breast cancer, you have probably gone through treatment hoping for remission or recovery. However, if your healthcare team tells you that your cancer has metastasized, you and your partner may be facing new choices regarding your care and your future together. This can be a time of frustra­tion, fear, poor communication, and physical discomfort. But this also can be a time of growth, meaning, and healing. By coming to understand each other’s perspective, you and your part­ner can begin to work as a team to navigate this experience together.

Have those difficult conversations.
Talking about serious issues is never easy, and making decisions about care can be difficult, even for the strongest couples. There is no right or wrong way to communicate. However, research has shown that those who talk openly about cancer-related concerns feel better and are happier with the decisions they make.

Choose anything you both like to do, and enjoy each other’s company.

Author of Article photo

Dr. Hoda Badr

It can be difficult to approach these sensitive topics, so practice what you want to say to your partner. Then, find a quiet time to talk without distraction. Be clear about what you want to get out of the conversation, and speak from your heart. Talk about how you feel, but avoid blaming or criticizing your part­ner. Important topics to discuss include:

  • How you can help each other cope with changes and with the unknown
  • How you can prepare for the future
  • Your partner’s feelings about being caregiver
  • Your feelings about being cared for
  • Changes in your relationship
  • Your wishes and concerns regarding your care and your future together

You may find that you are both on the same page, or that you each have very different thoughts on these topics. This makes it all the more important for the two of you to get things out in the open.

Spend time together.
Many couples find that making plans to spend time together helps to strengthen their rela­tionships. Nothing elaborate is required. Watch a favorite movie, go out to dinner, or reminisce over family photos. Choose any­thing you both like to do. All that matters is that you make time to enjoy each other’s company.

Don’t forget about intimacy.
Despite physical changes you may be experienc­ing, you and your partner can continue to be intimate. Try new touch. Cancer can change your body; areas that used to feel good when touched may now feel numb or painful. Rather than give up on intimacy, work together to figure out what touch feels good. Maintain your loving feelings by kissing, hug­ging, and caressing. Physical touch can be therapeutic and can let your partner know that he or she is dear to you and that you are in this together.

Remember that intimacy isn’t just about the physical – it’s about cultivating loving feelings and staying connected. Take time to reconnect. Go for a walk, give each other a massage, or play spe­cial music that you both enjoy. Protect your time together, and eliminate dis­tractions like cell phones and the TV.

Approaching cancer as “our prob­lem” and finding opportunities to connect as a couple can help cultivate a strong emotional bond that will sup­port you through this difficult time and allow you both to find growth, mean­ing, and healing.

♦ ♦ ♦ ♦ ♦

Dr. Hoda Badr is an assistant professor in the department of Oncological Sciences at the Icahn School of Medicine at Mount Sinai Hospital in New York, NY.

This article was published in Coping® with Cancer magazine, 2013.

Life after Prostate Cancer Treatment

by Steven Lamm, MD, Herbert Lepor, MD, and Dan Sperling, MD

Prostate Cancer Image

The transition from prostate can­cer patient to prostate cancer survivor can be difficult for some men. Even if all detected cancer was removed or eradicated through treatment, there is always the fear that it may return or spread. It’s natural to experience some level of anxiety around this, and it’s not unfounded. Statisti­cally, biochemical recurrence, a rise in PSA levels that may indicate the presence of active prostate cancer, is not uncommon. This is why regular follow-up with your doctor after treat­ment is complete is so important.

Regular Follow-Up
Your doctor should review your follow-up plan with you at your first post-treatment appointment. For most men with non-metastatic cancer who have had their cancer removed or destroyed through surgical, radiation, or ablative treatment, follow-up will be every six months for at least five years. You will have regu­lar PSA tests to catch any recurrence early. Your doctor may also recommend periodic imaging tests such as MRI following focal ablation.

If you have metastatic prostate can­cer, your treatment will be ongoing and focused on containing further spread of the cancer and managing any unpleas­ant symptoms you are experiencing. You should remain an active participant in your treatment plan. When your doc­tor recommends changes, ask why, and make sure you are fully informed on what side effects you may experience. Keep a written record of symptom changes that you can share with your doctor at each visit. Stay involved and encourage your significant other to do so as well.

For many men, going through cancer treatment offers a good opportunity to reassess life priorities.

Author of Article photo

Dr. Steven Lamm

If you haven’t already, now is a good time to get all of your medical records in order. If at any point in the future you need to see a new doctor, having a full set of records of your cancer-related treatment history is important. These should include:
Pathology Reports Request a copy of all biopsy and surgical pathology reports.
Imaging Reports Request a digital copy of all scans from the imaging facility or radiologist’s office.
Operative Reports If you have had a radical prostatectomy, request a copy of the surgical report from your surgeon or hospital.
Radiation Reports If you have had radiation therapy, request a treat­ment summary from your radiation oncologist.
Hormone or Other Drug Treatment Keep a list of all cancer-related medications you have taken and are currently taking, including dosage and special instructions. Note the dates you started and discontinued a medication.
Hospital Discharge Summary If you had inpatient prostate cancer treatment, keep a copy of the summary you re­ceived at discharge.

If you do need to pass these records along to a new physician at any point, make sure you keep a copy for your own files.

Author of Article photo

Dr. Herbert Lepor

Emotional Health
Cancer is a life-threatening and, subsequently, a life-changing condition. For many men, going through cancer treatment offers a good opportunity to reassess life priorities, a time to reflect on where they’ve been and rethink where they are headed. If we must find a sil­ver lining in cancer, it is this unique opportunity to really look at your value system and see what really matters to you – family, career, lifestyle, etc. You may find that things that used to aggra­vate or upset you really don’t bother you much anymore with your new post-cancer perspective on life.

Side Effects
Urinary, sexual, and bowel-related side effects of treatment are troublesome to many men; how­ever, these will often improve with time, patience, and, in some cases, additional treatment. Being well in­formed about what is normal following treatment, and being prepared to cope with it, is the best way to get through this sometimes-difficult post-treatment period. You may need to make tempo­rary changes in your schedule and activities to deal with some issues. For example, if your work or recreational activities involve a lot of travel or out­door time, you may need to change your routine to have closer access to bathroom facilities.

Being well informed about what is normal following treatment, and being prepared to cope with it, is the best way to get through this sometimes-difficult post-treatment period .

Remember, prostate cancer treat­ment and recovery affect other people in your life too. Make sure your sig­nificant other is also aware of the side effects you are dealing with. Having their emotional support can be ex­tremely helpful during your recovery.

Author of Article photo

Dr. Dan Sperling

Anxiety
Most men experience some level of anxiety at prostate cancer diag­nosis and throughout treatment. There is fear of the unknown and a constant parade of doctor’s appointments, laboratory tests, and hospital visits that can disrupt life for weeks or even months. Once you’ve passed the milestone of your last treatment session, it can be tough to return to your regular pre-cancer life of work, home, and family and let go of all of the worry and fear. You may also be anxious about the cancer coming back or spreading and your vulnerability to other health problems.

In some cases, this persistent anxiety is linked to depression and poor sexual performance. Anxiety may be inhibiting the return of sexual function, or erectile problems may be feeding your anxiety. Either way, support groups, therapy, or both may be helpful if you find that anxiety and depression are getting in the way of your daily functioning and enjoyment of life. If depression is ongoing and persistent, there are medications that may help.

Intimacy and Sex
It’s important to have realistic expectations about sex following prostate cancer treatment. The goal should be to try to return erectile function to the level it was before treat­ment. Depending on your age and health, this may have been limited to begin with, and you should not expect your erections to be better than they were before diagnosis. All men should have a healthy dose of patience. It is not uncommon for men to continue to recover erectile function up to several years following treatment. Give your­self time.

One issue men may experience that often doesn’t come up in discussion with their doctor before treatment is incontinence dur­ing sex. Men may leak urine during foreplay or sexual activity. While this can be awk­ward for you and your partner, just knowing it is a possibility ahead of time can allevi­ate any anxiety. This problem may be easily remedied by urinating before any sexual contact.

After radiation, radical prostatec­tomy, or whole gland ablation of the prostate, the discharge of semen is eliminated. In some men, a small discharge of sticky fluid will appear just prior to orgasm. This fluid is from the urethral glands and contains no sperm.

Even if you aren’t able to maintain an erection hard enough for penetration and intercourse, there are still plenty of other ways to achieve intimacy and pleasure with your partner. Erection is not necessary for orgasm, and with a loving partner whom you trust, you may find that your sex life is more adventuresome than ever.

Healthy Habits
Maintaining a healthy lifestyle, with plenty of exercise, nutri­tious food, and other healthy habits, grows in importance as you age. Men with other health conditions, such as high blood pressure, diabetes, or heart disease, should focus on staying on top of their treatments for those conditions. If you smoke, quitting is the single best thing you can do to improve your health, reduce your risk of cancer recurrence, and prevent osteoporosis if you are on androgen deprivation therapy.

If you have brothers or an adult son, make sure they are aware of their increased risk for developing prostate cancer. They should talk to their own doctor or urologist about their specific risk profile and the screening schedule that’s right for them.

♦ ♦ ♦ ♦ ♦

Dr. Steven Lamm is the director of the Men’s Health Center at New York University’s Langone Medical Center in New York, NY, and a practicing internist. Dr. Herbert Lepor is the Martin Spatz Chairman of the depart­ment of Urology and the director of the Smilow Comprehensive Prostate Cancer Center at NYU Langone Medical Center. Dr. Dan Sperling is the medical director at the Sperling Prostate Center in New York, NY.

Excerpted with permission from Redefining Prostate Cancer: An Innovative Guide to Diagnosis and Treat­ment by Steven Lamm, MD, Herbert Lepor, MD, and Dan Sperling, MD, © 2013 by Spry Publishing.

This article was published in Coping® with Cancer magazine, November/December 2013.

What Can I Do to Feel Better?

(Hint: The answer may include cancer prehabilitation.)

by Julie Silver, MD

When I was diagnosed with cancer 10 years ago, I re­member my initial shock. I also recall that I had to wait to start treatment. I had medical appointments during that period, but I also had plenty of time to worry. As a rehabilitation physician, I know there is a better way to use this critical window of time between diagnosis and the beginning of treatment – and it’s called cancer prehabilitation.

Cancer prehabilitation should be standard care for most newly diagnosed individuals. The goal of prehabilitation is to prepare a person – both physically and emotionally – for upcoming surgery and other cancer treatments. For exam­ple, if you’re newly diagnosed with prostate cancer, you would attend a pre­habilitation workshop where you would learn pelvic floor muscle exercises to decrease the potential for post-operative urinary incontinence. You would also learn strategies to reduce anxiety and lower stress.

In prehabilitation, it’s ideal to com­bine emotional support techniques with physical strategies for improving gen­eral strength and endurance, as well as more focused physiological outcomes, such as shoulder range-of-motion exercises for a woman about to have a mastectomy or swallowing exercises for a man facing head and neck cancer treatment. This tag team of emotional and physical support through scientifi­cally proven interventions is designed to improve both your treatment experience and your health outcomes.

The goal of prehabilitation is to prepare a person – both physically and emotionally – for upcoming surgery and other cancer treatments.

Author of Article photo

Dr. Julie Silver

A cancer diagnosis affects both physical and emotional health, and the relationship between the two is strong, meaning it’s likely that the better you feel physically, the better you will feel emotionally, and vice versa. A recent study found that survivors have a sig­nificantly worse quality of life due to physical or emotional problems than people who haven’t had cancer. The study also found that more survivors had a reduced quality of life because of physical problems rather than emo­tional ones. Other studies have shown that one of the leading causes of dis­tress in survivors is physical disability. The obvious conclusion is that if we prevent physical problems early on through prehabilitation interventions, many cancer survivors will feel better both physically and emotionally.

Too often, cancer survivors struggle more than they need to. They may have a cluster of side effects, including pain, fatigue, and stress, that feed off of each other, making it hard to sleep at night and function during the day. While each side effect might not be a big problem on its own, together they can cause sig­nificant physical and emotional disability.

Rehabilitation teams work together to address several cancer-related issues at once. This has a synergistic healing effect that can markedly improve how survivors feel and function in a rela­tively short period. Cancer prehabilitation can help survivors of all types and stages of cancer to function at a higher level and feel better.

♦ ♦ ♦ ♦ ♦

Dr. Julie Silver is an associate professor in the department of Physical Medicine and Rehabilitation at Harvard Medical School in Boston, MA. She is the author of What Helped Get Me Through: Cancer Survivors Share Wisdom and Hope (American Cancer Society). Dr. Silver has developed a national model for cancer rehabilitation called the STAR Program (Survivorship Training and Rehabilitation), which has been adopted by more than 100 hospitals and cancer centers throughout the United States. Learn more about the STAR Program at OncologyRehabPartners.com.

This article was published in Coping® with Cancer magazine, November/December 2013.

Blessings in Disguise

by Monica M. Paul

 
Inspiration image

There are moments when we wonder,
is it something that we’ve done,
Is it something that we didn’t do that
made us be the one?

So many burning questions rushing
through a silent mind,
So many countless seconds ticking
down the hands of time.

Yet through this open portal, where
we view with wiser eyes,
We see the greater meaning;
it’s a blessing in disguise!

There are things that we’ve forgotten
as we went along our way,
Things like simple acts of kindness
and to pray out loud each day.

There are things that we avoided,
brand new lessons we must learn,
How to truly feel grateful for the
kindnesses returned.

There’s a compass that reminds us
that the heart is truly home,
And the simple truth that guides us
is that no one fights alone.

For me, I am so thankful for the
help that came my way,
And send out my warmest blessings
for them each and every day.

I am happy to be cared for
by a team that is so prized,
It is not a tragic moment;
it’s a blessing in disguise!

♦ ♦ ♦ ♦ ♦

Monica Paul is an advanced breast cancer survivor living in Memphis, TN.

This article was published in Coping® with Cancer magazine, November/December 2013.

FDA Approves Nexavar to Treat Type of Thyroid Cancer


Photo by Cancer Type

The U.S. Food and Drug Administration has expanded the approved uses of Nexavar (sorafenib) to treat late-stage (metastatic) differentiated thyroid cancer.

Thyroid cancer is a cancerous growth of the thyroid gland, which is located in the neck. Differentiated thyroid cancer is the most common type of thyroid cancer. The National Cancer Institute estimates that 60,220 Americans will be diagnosed with thyroid cancer and 1,850 will die from the disease in 2013.

Nexavar works by inhibiting multiple proteins in cancer cells, limiting cancer cell growth and division. The drug’s new use is intended for patients with locally recurrent or metastatic, progressive differentiated thyroid cancer that no longer responds to radioactive iodine treatment.

“Differentiated thyroid cancer can be challenging to treat, especially when unresponsive to conventional therapies,” said Richard Pazdur, MD, director of the Office of Hematology and Oncology Products in the FDA’s Center for Drug Evaluation and Research. “Today’s approval demonstrates the FDA’s commitment to expediting the availability of treatment options for patients with difficult-to-treat diseases.”

Half of patients receiving Nexavar lived without cancer progression for at least 10.8 months compared to at least 5.8 months for participants receiving a placebo.

The safety and effectiveness of Nexavar were established in a clinical study involving 417 participants with locally recurrent or metastatic, progressive differentiated thyroid cancer that does not respond to radioactive iodine treatment. Nexavar increased the length of time patients lived without the cancer progressing (progression-free survival) by 41 percent. Half of patients receiving Nexavar lived without cancer progression for at least 10.8 months compared to at least 5.8 months for participants receiving a placebo.

The most common side effects in patients treated with Nexavar were diarrhea, fatigue, infection, hair loss (alopecia), hand-foot skin reaction, rash, weight loss, decreased appetite, nausea, gastrointestinal and abdominal pains and high blood pressure (hypertension). Thyroid stimulating hormone, a potential promoter of thyroid cancer, is more likely to become elevated while on treatment with Nexavar, requiring adjustment of thyroid hormone replacement therapy.

The FDA completed its review of Nexavar’s new indication under its priority review program. This program provides for an expedited, six-month review for drugs that may offer a significant improvement in safety or effectiveness of the treatment, prevention or diagnosis of a serious condition. Nexavar also received orphan-product designation by the FDA because it is intended to treat a rare disease or condition.

The FDA approved Nexavar to treat advanced kidney cancer in 2005. In 2007, the agency expanded the drug’s label to treat liver cancer that cannot be surgically removed.

Nexavar is co-marketed by Bayer HealthCare Pharmaceuticals Inc., based in Wayne, N.J., and Onyx Pharmaceuticals, based in South San Francisco, Calif.

♦ ♦ ♦ ♦ ♦

For more information, visit www.fda.gov.

This article was published in Coping® with Cancer magazine, November/December 2013.

How Do I Talk to My Kids about Cancer?

by Bonnie Indeck, LCSW

Wellness image

If you’re facing the challenge of parenting with cancer, you’re not alone – more than 1.5 million cancer survivors have children under the age of 18. Facing a cancer diagnosis can be difficult, but talking with your children about it may seem equally challenging.

Should I tell?
Your children should hear the news of your cancer diagnosis from you, not overhear it from a neighbor or friend. Being honest and open lets your children know that you trust them and gives them permission to talk with you and ask you questions. Let them know that it’s OK to tell you what they are feeling or thinking.

You don’t have to answer all of their questions right away. Tell them that you need to think about it and will get back to them. And then do just that.

How do I tell?
Arrange for a day when you have plenty of time. Don’t rush the conversation, and make sure you can spend some time with your children after giving them the news. Keep in mind it may be easier for your children to talk when riding in a car or playing a game.

Author of Article photo

Bonnie Indeck

Children take their cues from their parents. If you act in a confident manner, they will too. If you are worried, anxious, or overly tearful, they may mimic what they see. Tell your children ageappropriate truths, and respond to their questions in an honest manner. If possible, let them know that you believe you will be OK and that you will get through this as a family.

It’s important to keep your children’s routine as normal as possible and to reassure them that they will be taken care of during your treatment. Be specific: “You will continue to go to Cub Scout meetings” or “Grandma will be picking you up from the bus in the afternoon.” This will help your children feel secure.

Who else should I tell?
You might want to consider informing your children’s school about what’s happening at home. Make sure that the principal, your children’s teachers, and the school social worker, psychologist, or guidance counselor are aware. This will allow them to keep their eye on your children and give them extra support or reach out to them if needed. Keep them updated as your treatment needs and schedule change.

Enlist the help of friends and family. While it’s not always easy to accept help, it will make them feel good and help you out at the same time. If they offer, allow your friends and family members to bring dinner, go shopping, or help clean so you can spend more of your energy with your children.

What else may help?
Sometimes having your children visit you in your treatment surroundings can be helpful to them, as they can worry about the unknown, which is often worse than the reality of the situation. Talk with your healthcare team to find out the best time for children to visit, whether in the hospital or in the outpatient setting. Prepare your children by letting them know what to expect. Describe the room and explain what they may see. The duration of the visit should be based on the children’s ages. It is helpful to have another adult there who can take them home or talk with them after the visit if they have any worries.

How do I know if my children are coping well?
If you have any questions or concerns, talk with your doctor or nurse. You can also request to see the hospital social worker, who is trained to assess how well your children are doing and determine if they need some extra guidance. Take some time to do what you get pleasure from, even if for only a few minutes a day. Your children can sense your emotional state and will feel better knowing you are feeling good. Be with your children when you are able, play with them, read to them, and enjoy spending time with them.

♦ ♦ ♦ ♦ ♦

Bonnie Indeck has been working with cancer survivors and their families for more than 30 years. She is the manager of Oncology Social Work at Smilow Cancer Hospital at Yale-New Haven and the psychosocial coordinator for Yale Cancer Center in New Haven, CT.

For additional resources for parenting with cancer, visit the website for the Parenting At a Challenging Time (PACT) program at Smilow Cancer Hospital at Yale-New Haven, medicine.yale.edu/cancer/patient/support/pact.

This article was published in Coping® with Cancer magazine, January/February 2013.

You Can Move Past Mood and Anxiety Disorders

by Isabel Schuermeyer, MD

Wellness image


(Photo by Olimpik / Shutterstock.com)

The first step to overcoming mood and anxiety disorders after a cancer diagnosis is to recognize them. Mood and anxiety disorders are very common among people with cancer, even for those who never experienced these types of issues prior to their cancer diagnosis. Many factors can play into the devel­opment of these disorders, including the stress of the illness, the cancer it­self, and its treatment. Those without strong social support systems are at higher risk of developing mood and anxiety disorders.

Depression
After a cancer diagno­sis, people may say to you, “Of course you’re depressed.” However, these people are most likely referring to feelings of sadness, rather than true depression. Feeling sad is not the same as experiencing depression. Major depression is a medical condition that requires prompt attention and treat­ment, whereas sadness is a temporary emotion that subsides on its own.

Major depression not only affects your quality of life, but it can also affect your ability to tolerate pain, sometimes resulting in difficulty staying with the course of cancer treatment. Proper treatment of depression, however, results in improved quality of life, less pain, and shorter hospitalizations.

The symptoms of major depression include depressed mood, decreased interest in activities you previously enjoyed, poor concentration, low self-esteem, feelings of hopelessness, and changes in sleep or appetite. While everyone feels down from time to time, in order for major depression to be diagnosed, your symptoms must last at least two weeks. During regular visits, your oncologist may ask you questions about the symptoms listed above to screen for depression. If you are showing signs of depression, your doctor can refer you to a mental health provider in your area.

It is best to pick healthy coping mechanisms, such as using humor or making a conscious effort to take things one day at a time.

Author of Article photo

Dr. Isabel Schuermeyer

Mania
Very rarely, a person will develop mania during the course of cancer. When this occurs, it is often as a side effect of steroids given as part of the cancer treatment. Mania can be thought of as the opposite of depression. When this mood disorder develops, a person may experience decreased need for sleep, impulsive behavior, rapid speech, and increased activity. Mania is treated primarily with mood stabilizers. Depending on the severity of the mania, admission to a hospital or mental health facility for psychiatric treatment may be necessary. People with mania often require a psychiatric evaluation.

Anxiety
Anxiety is very prevalent in the cancer population. Some people will have a specific phobia, which is a type of anxiety disorder, such as a needle phobia or claustrophobia (a fear of closed spaces, such as during an MRI). Some people may even experience anticipa­tory anxiety, meaning they experience anxiety in anticipation of encountering the source of their phobia. Anticipatory anxiety can occur prior to doctors’ appoint­ments and scans, even if a person doesn’t actually have a phobia. In severe cases, a person can begin to experience anxiety months prior to appointments.

Generalized anxiety disorder is marked by overwhelming and persistent worries, poor concentration, irritability, restlessness, and sleep disturbances. Other anxiety disorders people with cancer may experience include post-traumatic stress disorder and panic disorder.

Coping Mechanisms
Typically, coping mechanisms that have worked for you in the past will work again to help you during this stressful time. It is best to pick healthy coping mechanisms, such as using humor or making a con­scious effort to take things one day at a time. Turning to drugs and alcohol is an unhealthy coping technique that you should avoid. Many people find support groups helpful, and most cancer centers offer these types of groups. You can also seek out local and online support groups and resources. Self-help books can be valuable as well.

Treatments
The two main treat­ments for major depression and anxiety disorders are antidepressant medications and psychotherapy, or talk therapy. Antidepressants are medications that are taken daily. They often require a few weeks before reaching their full effect. Many antidepressants are safe to use with chemotherapy and have few side effects. However, all medications have the potential for side effects, so it’s important to talk with your doctor prior to taking any new medications.

Psychotherapy can alleviate depression and anxiety by helping you develop new approaches to managing your symptoms and coping with general life problems. Psychotherapy can have long-term benefits.

Many resources are available to help you cope with your emo­tions after a diagnosis of cancer. However, if you develop a mood or anxiety disorder, you should seek out formal treatment from a mental health professional. With proper treatment, mood and anxi­ety disorders can be overcome, and you can attain a good quality of life.

♦ ♦ ♦ ♦ ♦

Dr. Isabel Schuermeyer is director of psycho-oncology at the Cleveland Clinic in Cleveland, OH.

This article was published in Coping® with Cancer magazine, September/October 2013.

Cancer

A Family Affair

by Eva Grayzel

Inspiration image

Eva (right) spends time with her husband, Ken, and her children, Elena and Jeremy.

When I returned home from the hospital, my children, seven-year-old Jeremy and five-year-old Elena, could barely look at me. I understood. I could hardly look at myself, even though I kept my sutures covered with scarves and ban­dages. My children shied away from my touch. How could I blame them? I couldn’t bring myself to touch my own wounds.

After my oral cancer treatment, I could barely eat, but I took pleasure in serving my family nourishing food, feeling in some way that it nourished me as well. Elena inspected every­thing I served carefully. “Mommy, did you take a taste with this fork?” she would ask.

“No, honey, I touched it to my lip to see if it was too hot for you.”

“I don’t want it,” she’d reply, even though we had explained several times that she couldn’t “catch” cancer from me.

Often, Elena became angry with me for no reason – she would hit me out of the blue, stick her tongue out, kick my shins. One day, I sat her on my lap and with my radiated, raw vocal chords said, “Elena, tell me why you’re angry. What did I do?”

She ran away saying, “Bad mommy.”

The emotional trauma to my children lasted long after I recovered.

My husband started putting Elena to bed because she didn’t want me to do it anymore. One night I heard her call out, “I want my mommy.” Ecstatic, I hurried to her room and said in a hoarse whisper, “It’s me, Mom.”

“I want my Mommy!” she cried.

I thought she didn’t hear me. I leaned closer, rubbed her back as I always had, and repeated, “Honey, it’s me. It’s Mom.”

“But I want my Mommy.”

I got it. She wanted her old mommy back. We all did.

I suppose it was good that Elena expressed her feelings. Jeremy was the opposite. He would play by himself with his astronaut action figures and space machines on the living room floor while I rested on the sofa. When I suggested he spend time with friends, he would resist unless they could play at our house. He never wanted to be too far from me. He never asked any questions, even when I reminded him that I would get better soon. I know he was scared, because every time I had a coughing attack, he ran out of the room in fear.

The emotional trauma to my children lasted long after I recovered. Three years after my recovery, Jeremy was with my mother looking for birthday cards. He found a get-well card and said, “Grandma, let’s buy this for Mom.” She had to remind him that I wasn’t sick anymore.

My daughter didn’t kiss me for two years. She was intuitive. She knew she could lose me, so she didn’t want to com­mit to one more day of loving me. We learned how to kiss again with a game I made up called “The Smallest Kiss in the World.” It was a competition to see which of my children could give me the smallest kiss. Elena took any opportu­nity to compete with her brother. She angled my face just right and kissed me. I didn’t even feel her kiss, yet I told her it was too big, just so I could get another. This game put us on the road to recovery.

My children were greatly affected by watching me struggle with the side effects of oral cancer treatment. Their fear of losing me was deep, real, and bottled. The pain my disease caused my children hurt me more than my dis­ease itself. This was my illness – keep my children out of it!

But it doesn’t work that way. Cancer is a family affair.

♦ ♦ ♦ ♦ ♦

Stage IV oral cancer survivor Eva Grayzel is a motivational speaker, master story­teller, and author. A champion for early detection, Eva founded SixStepScreening.org, six steps to a thorough oral cancer screening. On the website, you can watch the music video for her “Oral Cancer Save-A-Life Rap.” She is the author of two books for children who care about someone with cancer: Mr. C Plays Hide & Seek and Mr. C the Globetrotter, available in hard copy at Talk4Hope.com and in animated format in the iTunes store. Learn more about Eva at EvaGrayzel.com.

This article was published in Coping® with Cancer magazine, November/December 2013.

Research Presented at the 2013 Breast Cancer Symposium


Breast Cancer image

Cosponsored by the American Society of Breast Disease, the American Society of Breast Surgeons, the American Society of Clinical Oncology, the American Society for Radiation Oncology, the National Consortium of Breast Centers, and the Society of Surgical Oncology

The 2013 Breast Cancer Symposium was held September 7 - 9, 2013, in San Francisco, California.

Radiation Therapy for DCIS Does Not Seem to Increase Cardiovascular Disease Risk
A study conducted in the Netherlands found that, after 10 years, women who had received radiation therapy to treat ductal carcinoma in situ of the breast have no increased risk of cardiovascular disease compared to the general popu­lation of Dutch women. These results may be helpful to women who are deciding on their treatment plan, and may seem reassuring for DCIS survi­vors treated with radiotherapy.

“Doctors have been worried about late effects of breast radiation therapy, particularly cardiovascular disease. Our findings suggest that routine radiation therapy for women with DCIS does not appear to increase the risk of develop­ing cardiovascular disease later in life. This is especially important in light of the current concerns about over-treating patients diagnosed with DCIS,” says lead study author Naomi B. Boekel, MSC, a PhD student at the Netherlands Cancer Insti­tute in Amsterdam. “However, studies with longer follow-up after breast radia­tion therapy are needed before definitive conclusions about cardiovascular disease risk can be drawn.”

MRI Around the Time of Surgery May Be Unnecessary for Women with DCIS
A large, retrospective study of women who underwent a lumpectomy for ductal carcinoma in situ of the breast found that adding an MRI scan to standard mam­mography immediately before or after surgery does not decrease local recur­rence or contralateral breast cancer rates. Some doctors order MRI routinely to look for additional areas of cancer, and others use it to get more information if there is a discrepancy between what is found during the physical exam and what they are seeing on a mammogram or an ultrasound. The findings suggest that MRI does not improve long-term outcomes for most women with DCIS and, therefore, may lead to a decrease in routine use of MRI in this patient population.

“We now have a lot of evidence that indicates that MRI isn’t necessary for every patient with DCIS. Aside from the cost of the test, MRI has a rather high false-positive rate, which may re­sult in additional biopsies and a delay in surgery,” says first study author Melissa L. Pilewskie, MD, a breast surgeon at Memorial Sloan-Kettering Cancer Center in New York, NY. “We need to focus on spending money and time on tests that we know are going to provide benefit.”

♦ ♦ ♦ ♦ ♦

For more information on these and other studies presented at the 2013 Breast Cancer Symposium, visit Cancer.Net/BreastSymposium.

This article was published in Coping® with Cancer magazine, November/December 2013.

Handling Holiday Stress

by Samantha Burns Artherholt, PhD

Wellness image

For many of us, the holiday season is a wonderful time of year, bring­ing with it meaningful traditions and fun family gatherings. However, the holidays can also bring their share of stress, especially for cancer survivors who may be dealing with fatigue or other treatment-related side effects. Keep reading for advice on how to handle common holiday stressors and have a happy, healthy holiday season.

Finances
With pressure to spend money on gifts, food, entertainment, and travel, in addition to medical ex­penses, dealing with finances during the holidays can be a major source of stress. Try these tips for easing the financial strain of the season:

  • Be realistic. Take a good look at your finances, determine how much you can spend this year, and stick to your budget.
  • Limit the number of gifts you buy. Instead of purchasing gifts for each mem­ber of your extended family, consider drawing names and only purchasing a gift for the family member whose name you draw. Or you might suggest that your family donate to a favorite charity or volunteer together instead of exchang­ing gifts this year.
  • Get creative. Homemade crafts and treats often are more treasured (and less expensive) than store-bought gifts.

Focus on doing some of the things you want to do. Ask yourself, “What would I like to do this holiday season?” and “What gives me joy?”

Author of Article photo

Dr. Samantha Artherholt

Grief and Loss
Feelings of grief and sadness may not be conducive to the holiday spirit, but these emotions are surprisingly common during this time of year. Certain events and traditions may trigger memories of loved ones who have passed away. The first holiday season after a loss can be particularly challenging. Consider these strategies for managing these difficult emotions:

  • Don’t deny your feelings. It’s OK to feel sad about the loss of a loved one, even if it happened quite a while ago.
  • Consider celebrating the holidays in a new way. Sometimes, especially in the first year following a loss, it can be too difficult to participate in traditional holiday celebrations without your loved one. Spending the holidays in a different location – at a friend’s house or perhaps even in a different state or country – might help take your mind off your grief.
  • Reach out, and share happy memo­ries. Sometimes it helps to talk about your grief with a family member or a trusted friend. You might learn that they, too, are experiencing similar emotions. If you’re feeling lonely, find a local event or religious celebration where you can interact with others.

Commitments
The hustle and bustle of the holiday season can be exhaust­ing, even if you aren’t going through cancer treatment. You may feel pulled in multiple directions, with travel, social activities, and family commitments piled on top of your usual everyday demands. Exhaustion can intensify your stress and weaken your immune system, making you more susceptible to colds and other illnesses – which is the last thing you need! These strategies might help:

  • Plan ahead. Set aside specific days for errands like shopping and baking so you have time for visiting friends and par­ticipating in other activities you enjoy.
  • Set realistic expectations and bound­aries. The holidays don’t need to be “perfect.” Learn to say no; people will understand if you can’t participate in every event or activity. Ask for help when you need it.
  • Don’t put healthy habits on the back burner. Be sure to get plenty of sleep and exercise. Eat a healthy snack before going to holiday gatherings so you’re not tempted to go overboard on sweets, snacks, or alcohol.
  • Take some time for yourself. Close your eyes, and take slow, deep breaths to help elicit a sense of calm. A few minutes of this restorative alone time may refresh you enough to tackle the rest of your to-do list.
  • Focus on doing some of the things you want to do. Ask yourself, “What would I like to do this holiday season?” and “What gives me joy?”

Many cancer survivors find that they have a renewed outlook on life and ap­preciate time with family and special traditions even more than they did before their diagnosis. By tak­ing note of what causes you stress and taking steps to alleviate that stress, not only can you survive the holiday season, but you can enjoy it as well!

♦ ♦ ♦ ♦ ♦

Dr. Samantha Burns Artherholt is a clinical psychologist specializing in supporting sur­vivors of cancer and other serious illnesses at Seattle Cancer Care Alliance and the University of Washington Medical Center in Seattle, WA.

If you feel that sadness, irritability, or anxiety are interfering with your enjoyment of the holidays or life in general, talk to your medical team. Don’t hesitate to seek out professional help if you need it.

This article was published in Coping® with Cancer magazine, November/December 2013.

FDA Approves Imbruvica for Rare Blood Cancer

Second drug with breakthrough therapy designation to receive FDA approval


Photo by Cancer Type

The U.S. Food and Drug Administration has approved Imbruvica (ibrutinib) to treat patients with mantle cell lymphoma (MCL), a rare and aggressive type of blood cancer.

MCL is a rare form of non-Hodgkin lymphoma and represents about 6 percent of all non-Hodgkin lymphoma cases in the United States. By the time MCL is diagnosed, it usually has already spread to the lymph nodes, bone marrow and other organs.

Imbruvica is intended for patients with MCL who have received at least one prior therapy. It works by inhibiting the enzyme needed by the cancer to multiply and spread. Imbruvica is the third drug approved to treat MCL. Velcade (2006) and Revlimid (2013) are also approved to treat the disease.

“Imbruvica’s approval demonstrates the FDA’s commitment to making treatments available to patients with rare diseases,” said Richard Pazdur, MD, director of the Office of Hematology and Oncology Products in the FDA’s Center for Drug Evaluation and Research. “The agency worked cooperatively with the companies to expedite the drug’s development, review and approval, reflecting the promise of the Breakthrough Therapy Designation program.”

Imbruvica is the second drug with breakthrough therapy designation to receive FDA approval. The Food and Drug Administration Safety and Innovation Act, passed in July 2012, gave the FDA the ability to designate a drug a breakthrough therapy at the request of the sponsor if preliminary clinical evidence indicates the drug may offer a substantial improvement over available therapies for patients with serious or life-threatening diseases.

“Imbruvica’s approval demonstrates the FDA’s commitment to making treatments available to patients with rare diseases."

The FDA is approving Imbruvica under the agency's accelerated approval program, which allows the FDA to approve a drug to treat a serious disease based on clinical data showing that the drug has an effect on a surrogate endpoint that is reasonably likely to predict a clinical benefit to patients. This program provides earlier patient access to promising new drugs while the company conducts confirmatory clinical trials. The FDA also granted Imbruvica priority review and orphan-product designation because the drug demonstrated the potential to be a significant improvement in safety or effectiveness in the treatment of a serious condition and is intended to treat a rare disease, respectively.

Imbruvica’s accelerated approval for MCL is based on a study where 111 participants were given Imbruvica daily until their disease progressed or side effects became intolerable. Results showed nearly 66 percent of participants had their cancer shrink or disappear after treatment (overall response rate). An improvement in survival or disease-related symptoms has not been established.

The most common side effects reported in participants receiving Imbruvica are low levels of platelets in the blood (thrombocytopenia), diarrhea, a decrease in infection-fighting white blood cells (neutropenia), anemia, fatigue, musculoskeletal pain, swelling (edema), upper respiratory infection, nausea, bruising, shortness of breath (dyspnea), constipation, rash, abdominal pain, vomiting, and decreased appetite. Other clinically significant side effects include bleeding, infections, kidney problems and the development of other types of cancers.

Imbruvica is co-marketed by Sunnyvale, Calif.-based Pharmacyclics and Raritan, N.J.-based Janssen Biotech, Inc. Velcade (bortezomib) is marketed by Millennium Pharmaceuticals, based in Cambridge, Mass. Revlimid (lenalidomide) is marketed by Summit, N.J.-based Celgene.

♦ ♦ ♦ ♦ ♦

For more information, visit fda.gov.

New ASCO Choosing Wisely® List Details Five Cancer Tests and Treatments Routinely Performed Despite Lack of Evidence

List provides immediate steps for physicians to improve quality and value in oncology care


Knowledge image

The American Society of Clinical Oncology (ASCO) has announced its second “Top Five” list of opportunities to improve the quality and value of cancer care. Published in the Journal of Clinical Oncology (JCO), ASCO’s second Top Five list was released as part of the Choosing Wisely® campaign, sponsored by the ABIM Foundation, to encourage conversations between physicians and patients aimed at curbing the use of certain tests and procedures that are not supported by clinical research. One of the first nine medical societies to join the Choosing Wisely campaign, ASCO issued its first Top Five list in April 2012.

“As physicians, we have a fundamental responsibility to provide high-quality, high-value cancer care for all of our patients,” said Lowell E. Schnipper, MD, lead author of the JCO article and chair of ASCO’s Value of Cancer Care Task Force. “That means eliminating screening and imaging tests where the risk of harm outweighs the benefits, and making sure that every choice of treatment reflects the best available evidence. By providing evidence-based care, we not only help our patients live better with cancer, we also assure they are getting high-quality care that will deliver the greatest possible benefit for the cost.”

ASCO’s New “Top Five” Choosing Wisely List

Thee following list was developed by ASCO’s Value of Cancer Care Task Force, which solicited ideas from the full ASCO membership, regional oncology societies and patient advocates. Each recommendation is based on a comprehensive review of current high-level clinical evidence (including published studies and guidelines from ASCO and other organizations), conducted by the Task Force.

1. Don't give patients starting on a chemotherapy regimen that has a low or moderate risk of causing nausea and vomiting antiemetic drugs intended for use with a regimen that has a high risk for this effect.

Different chemotherapy treatments produce side effects of variable severity, including nausea and vomiting, and many medications have been developed to help control these side effects. When successful, these medications can help patients avoid hospital visits, improve quality of life, and lead to fewer changes in the chemotherapy regimen.

In recent years, new drugs have been introduced to help manage the most severe and persistent cases of nausea and vomiting that result from certain chemotherapy regimens. ASCO recommends the use of these drugs be reserved only for patients taking chemotherapy that has a high potential to produce severe and/or persistent nausea and vomiting, as they are very expensive and not without their own side effects. For patients receiving chemotherapy that is less likely to cause nausea and vomiting, there are other effective anti-emetic drugs available at a lower cost.

2. Don’t use combination chemotherapy (multiple drugs) instead of single-drug chemotherapy when treating an individual for metastatic breast cancer unless the patient needs urgent symptom relief.

While combination chemotherapy has been shown to slow tumor growth in patients with metastatic breast cancer, it has not been proven to improve survival over single-drug chemotherapy, and it often produces more frequent and severe side effects, worsening a patient’s quality of life. As a general rule, therefore, ASCO recommends giving chemotherapy drugs one at a time in sequence, which may improve a patient’s quality of life and does not typically compromise overall survival. Combination therapy may, however, be useful and worthwhile in situations where the cancer burden must be reduced quickly because it is causing significant symptoms (e.g., pain and discomfort) or is immediately life threatening.

3. Avoid using advanced imaging technologies -- positron emission tomography (PET), CT and radionuclide bone scans -- to monitor for a cancer recurrence in patients who have finished initial treatment and have no signs or symptoms of cancer.

Evidence shows that using PET or PET-CT to monitor for cancer recurrence in asymptomatic patients who have completed cancer treatment and have no signs of disease does not improve outcomes or survival. These expensive tools can often lead to false positive results, which can cause a patient to have additional unnecessary or invasive procedures or treatments or be exposed to additional radiation.

4. Don’t perform PSA testing for prostate cancer screening in men with no symptoms of the disease when they are expected to live less than 10 years.

Men with medical conditions or other chronic diseases that may limit their life expectancy to less than 10 years are unlikely to benefit from PSA screening. Studies have shown that in this population, PSA screening does not reduce the risk of dying from prostate cancer or of any cause. Furthermore, such testing could lead to unnecessary harm, including complications from unnecessary biopsy or treatment for cancers that may be slow-growing and not ultimately life threatening. For men with a life expectancy of greater than 10 years, however, ASCO has previously recommended that physicians discuss with patients whether PSA testing for prostate cancer screening is appropriate.

5. Don’t use a targeted therapy intended for use against a specific genetic abnormality unless a patient’s tumor cells have a specific biomarker that predicts a favorable response to the targeted therapy.

Targeted therapy can significantly benefit people with cancer because it can target specific pathways that cancer cells use to grow and spread, while causing little or no harm to healthy cells. Patients who are most likely to benefit from targeted therapy are those who have a specific biomarker in their tumor cells that indicates the presence or absence of a specific abnormality that makes the tumor cells susceptible to the targeted agent.

Compared to chemotherapy, the cost of targeted therapy is generally higher, as these treatments are newer, more expensive to produce, and under patent protection. In addition, like all anti‐cancer therapies, there are risks to using targeted agents when there is no evidence to support their use because of the potential for serious side effects or reduced efficacy compared with other treatment options.

“All medical professionals should be accountable for both their patients’ well-being as well as their wise stewardship of health resources. High-value care not only benefits patients, but also reduces societal health care costs which should be a concern for everyone,” said Clifford A. Hudis, MD, FACP, President of ASCO. “At ASCO, we want to ensure that oncology providers have the skills and tools needed to assess the benefits of tests and treatments and to discuss options with their patients. These goals are not in conflict: the best care for patients is the best approach for society.”

To help members assess care in their practices based on ASCO’s Top Five lists, measures based on the Top Five recommendations are offered as test measures in ASCO’s Quality Oncology Practice Initiative (QOPI®) , a national program that helps practices assess and improve the quality of care they deliver through retrospective medical record abstraction and performance analysis. A team of clinicians and quality measurement experts are reviewing “Top Five” test performance based on more than 14,000 records (160 practices) and further refining the measures for future implementation.

♦ ♦ ♦ ♦ ♦

For more information on ASCO’s Top Five list and the Choosing Wisely campaign, visit asco.org/topfive.

Breast Cancer Survivor and Say Yes to the Dress: Atlanta Star Lori Allen Says Yes to Survival

by Jessica Webb Errickson

Celebrity Cancer Survivor


(Photos by Michael A. Schwarz)

Famed bridal-store owner Lori Allen readily admits that she’s no overnight success. Two weeks after graduating college, the sassy star of TLC’s Say Yes to the Dress: Atlanta set up shop in a cramped, 1,000-square-foot section of an Atlanta strip mall. With a little time and a lot of hard work, Bridals by Lori blossomed into one of the nation’s largest full-service bridal salons, taking over the 25,000-square-foot building across the street from its tiny strip mall location. The thriving business caught the eye of television network TLC, and in 2010, Bridals by Lori became the setting for Say Yes to the Dress: Atlanta, with Say Yes to the Dress: Bridesmaids falling in line soon thereafter.

Lori has worked hard to get to where she is today, so it’s no surprise that when breast cancer entered the picture, she didn’t just close up shop. Deter­mined to come out stronger in the end, she faced down her diagnosis with true Southern grit and set out to show others facing cancer that they, too, can come out stronger on the other side.

The Phone Call
In early 2012, a suspicious shadow on Lori’s annual mammogram called for a biopsy, but Lori wasn’t really concerned. At the time, she was more focused on her husband, Eddie, who was facing colorectal cancer surgery. But on the morning of Eddie’s surgery, Lori re­ceived an unexpected phone call that would shift her focus from Eddie’s health to her own.

“I look down at my phone, and it’s my OB/GYN,” Lori shares in an inter­view with Coping® magazine. “His voice cracked, and he told me I had breast cancer.” The usually quick-witted Lori was speechless. “When you get that kind of news, you lose all of your senses and you cannot focus,” she admits.

“Coming out of the other side of cancer, life sure is good.”

When she regained her composure, she realized she had an opportunity. “After letting it sink in my head, I’m thinking, ‘God, why do I have breast cancer? I try to live a great life. I try to set an example for people. I try to do what’s right. Why did I get breast can­cer?’” Lori explains. “Then it dawned on me – why not? I have a huge plat­form for women who watch Say Yes to the Dress. I’ve got to share this story.”

So Lori contacted the show’s pro­ducer, and three days after her diagnosis, TLC began following her to every ap­pointment, documenting her journey for what would become the TV special Say Yes to the Cure: Lori’s Fight.

A Tough Decision
When Lori met with her surgeon to discuss treatment options, she learned that she had two types of cancer in her right breast, atypical cells in her left breast, and a choice to make: undergo a double lumpectomy or have a double mastectomy.

Not ready to face a mastectomy, Lori did some research and took what she felt was the more conservative route – double lumpectomy with lymph node removal. Unfortunately, her mar­gins didn’t come back clear; cancer cells were still present in the area sur­rounding the tissue removed during surgery. She could now have a second lumpectomy, with the possibility that her margins still might not come back clear, or go ahead with the double mastectomy.

“The scars don’t bother me, because the scars tell a story of what I’ve been through.”

“I thought about it and prayed about it some more, and I decided, ‘OK, you’ve got to quit being a sissy and worry­ing about how bad it’s going to hurt and go see a plastic surgeon and get a double mastectomy,’” Lori says, “and that’s what I did.”

Lori opted for reconstruction with the latissimus dorsi flap procedure, which uses muscles and skin from the back to create new breasts. “The scars don’t bother me, because the scars tell a story of what I’ve been through. But I didn’t want to look at myself and not feel some normalcy too,” she says of her decision. “That’s why I went ahead with the reconstruction.”

Though immediate reconstruction isn’t right for every­one, “I did what was right for me,” she explains. “You’ve got to come to the decision that makes you comfortable. If it makes you happy to go in there and get bigger boobs than you had before, I say go for it, girl! We’ve been through a lot, so we deserve something!”

A New Outlook
Now that she’s cancer-free, Lori doesn’t sweat the small stuff. “I used to let stuff get to me. Three beads would be falling off a dress, and I’d just come unglued and call all my seamstresses,” she recalls. “Now, I shoot them an email, and I release it until the next day. You cannot sweat the small stuff and have cancer.”

In October, TLC aired an update of Say Yes to the Cure: Lori’s Fight, boosting her mission to share her story and be a source of inspiration. “If Lori Allen, the biggest sissy in the whole world, can get through this,” she quips, “anyone can.”

♦ ♦ ♦ ♦ ♦

You can catch Lori on season six of Say Yes to the Dress: Atlanta starting Friday, November 8, at 9/8c on TLC.

This article was published in Coping® with Cancer magazine, November/December 2013.

FDA Approves Gazyva for Chronic Lymphocytic Leukemia

Drug is first with breakthrough therapy designation to receive FDA approval


Photo by Cancer Type

The U.S. Food and Drug Administration has approved Gazyva (obinutuzumab) for use in combination with chlorambucil to treat patients with previously untreated chronic lymphocytic leukemia (CLL).

CLL is a blood and bone marrow disease that usually gets worse slowly. According to the National Cancer Institute, 15,680 Americans will be diagnosed and 4,580 will die from the disease this year.

Gazyva works by helping certain cells in the immune system attack cancer cells. Gazyva is intended to be used with chlorambucil, another drug used to treat patients with CLL.

Gazyva is the first drug with breakthrough therapy designation to receive FDA approval. This designation was requested by the sponsor and granted soon after the biologic license application to support marketing approval was submitted to the FDA. The FDA can designate a drug a breakthrough therapy at the request of the sponsor if preliminary clinical evidence indicates the drug may offer a substantial improvement over available therapies for patients with serious or life-threatening diseases.

“This approval reflects the promise of the Breakthrough Therapy Designation program, allowing us to work collaboratively with companies to expedite the development, review and availability of important new drugs.”

The FDA also granted Gazyva priority review because the drug demonstrated the potential to be a significant improvement in safety or effectiveness in the treatment of a serious condition. And the FDA granted Gazyva orphan product designation because it is intended to treat a rare disease.

“Today’s approval represents an important new addition to the treatments for patients with CLL,” said Richard Pazdur, MD, director of the Office of Hematology and Oncology Products in the FDA’s Center for Drug Evaluation and Research. “This approval reflects the promise of the Breakthrough Therapy Designation program, allowing us to work collaboratively with companies to expedite the development, review and availability of important new drugs.”

Gazyva’s approval for CLL is based on a study of 356 participants in a randomized open-label multicenter trial comparing Gazyva in combination with chlorambucil to chlorambucil alone in participants with previously untreated CLL. Participants receiving Gazyva in combination with chlorambucil demonstrated a significant improvement in progression free survival: an average of 23 months compared with 11.1 months with chlorambucil alone.

The most common side effects observed in participants receiving Gazyva in combination with chlorambucil were infusion-related reactions, a decrease in infection-fighting white blood cells (neutropenia), a low level of platelets in the blood (thrombocytopenia), low red blood cells (anemia), pain in the muscles and bones (musculoskeletal pain), and fever (pyrexia).

Gazyva is being approved with a boxed warning regarding Hepatitis B virus reactivation and a rare disorder that damages the material that covers and protects nerves in the white matter of the brain (progressive multifocal leukoencephalopathy). These are known risks with other monoclonal antibodies in this class and rare cases were identified in participants on other trials of Gazyva. Patients should be advised of these risks and assessed for Hepatitis B virus and reactivation risk.

Gazyva is marketed by Genentech, a member of the Roche Group, based in South San Francisco, Calif.

♦ ♦ ♦ ♦ ♦

For more information, visit fda.gov.

Is Cancer Keeping You Awake?

by Kim Day, LISW-S, OWS-C, ACHP-SW

Wellness image


(Photo by Monkeybusinessimages / Bigstock.com)

Sleep disturbances can occur dur­ing all phases of cancer, with both physical and psychological fac­tors contributing to the problem. But before you despair and feel doomed to nights of tossing and turning, know that once the triggers for wakefulness are addressed, a host of strategies can help you get a good night’s sleep again.

It’s important to maintain good sleep hygiene, or behaviors that pro­mote a normal sleep-wake cycle. While hot flashes, pain, incontinence, frequent urination, fatigue leading to daytime napping, certain medications, hospital stays, and worry can all contribute to sleep problems, many of these issues can be managed with a bit of ingenuity:

  • Sleep in cot­ton nightclothes instead of syn­thetic materials and use light­weight blankets instead of heavy comforters to help manage hot flashes.
  • Limit the amount of fluids you consume in the evening to prevent frequent nighttime bathroom trips.
  • If pain is an issue, talk with your doctor about adjusting your pain medi­cation so you are getting an adequate dose to help you get through the night comfortably.
  • If you need to be in the hospital over­night, talk with the staff about ways to minimize interruptions during the night. You may not be able to eliminate all disturbances, but making your wishes known can help.

Don’t watch the clock at night. This will only feed your anxiety about not sleeping.

Author of Article photo

Kim Day

The following suggestions are also helpful for maintaining good sleep hygiene:

  • Go to bed at the same time each night, and wake at the same time each day.
  • Avoid napping, especially late in the day.
  • Keep your bedroom quiet, cool, and dark.
  • Avoid doing wakeful activities, such as watching TV, using a laptop, talking on the phone, and eating, in bed.
  • Exercise regularly, but not within three hours of bedtime.
  • Avoid caffeine at least six hours before bedtime.
  • Don’t watch the clock at night. This will only feed your anxiety about not sleeping.
  • Avoid hot baths in the evening. The process of falling asleep is tied to a decline in body temperature.
  • Try to get some exposure to bright light each day soon after you wake up. This helps regulate melatonin.
  • In the evening, allow yourself time to wind down before going to bed. A buffer between stimulating activities and a quieter time for relaxing encourages sleepiness.

If you still find yourself tossing and turning, trying too hard to sleep, don’t just lie awake in bed. Go to another room and do something quiet and relaxing. Listen to calming music or read some­thing pleasurable as a way to make the switch from restlessness to peace.

At times, negative thoughts about sleep may perpetuate your sleeplessness and fuel your anxiety: I can’t stand this. I have to do something to get more sleep. I won’t be able to function tomorrow without eight hours of sleep. Try to replace them with these more positive thoughts:

  • I’ve survived nights like this before.
  • I can function even when I’m tired.
  • I can be at peace while awake.

Incorporating yoga and mindfulness-based stress reduction practices into your daily routine may help calm anx­ious thoughts that disrupt sleep. Studies have shown that people who practice yoga experience better sleep quality, enhanced mood, less cancer-related distress, and improved quality of life. Progressive muscle relaxation can also promote a relaxed state and can prevent intrusive thoughts. This technique helps you to identify tension in the body and then release it.

Under the guidance of your doctor, treatment for relieving sleep problems may include the use of medication, but keep in mind that sleeping pills are a short-term fix. Since anxiety and depression are linked to insomnia, your doctor may determine that a low-dose antidepressant could be beneficial. You can also talk with a dietitian about your options for natural sleep remedies, such as chamomile tea and magnesium-rich foods.

Though frustrating, sleep disturbances are not life threatening, and they do respond well to treatment. Try the sug­gestions outlined here, connect with an oncology social worker for additional support, and look forward to sound sleep and sweet dreams.

♦ ♦ ♦ ♦ ♦

Kim Day is a clinical oncology social worker at University Hospitals Seidman Cancer Center in Cleveland, OH. She works with adult cancer survivors in the ambulatory setting. She is on the board of directors of the Association of Oncology Social Work and sits on the peer review committee for Master’s Training Grants in Clinical Oncology Social Work for the American Cancer Society.

This article was published in Coping® with Cancer magazine, September/October 2013.

 

Related Articles

 

 

{snp_right_no_ad}