Realistic Optimism in Cancerville

Helping a Loved One Cope with a Cancer Diagnosis

by William Penzer, PhD

Not knowing what will happen brings out the frightened, con­fused, and overwhelmed parts of us in all life’s areas, and especially in Cancerville. The philosophy of realis­tic optimism seeks to offset our automatic pessimistic reactions. It strives to replace hopelessness with hopefulness, within realistic boundaries. Hope is the corner­stone of life. It is the energy that pushes us to set and achieve our goals, which keep us moving forward instead of stand­ing still or going backward. Hope also enables us to encounter difficult reali­ties and believe that we can overcome them. In my opinion, nothing of signifi­cance has been accomplished without hope and optimism.

By empowering yourself in an opti­mistic direction, you will also empower your loved one with cancer. What I have learned from talking to many family members and friends in Cancerville is that their positivism spreads to their loved one and vice versa. Feeling hopeful and optimistic is infectious in a really good way. Hope and optimism spread virally like an interesting YouTube video. You can experience a supportive cycle in­stead of a vicious one.

Authentic communication resonates better than pretense.

Using Realistic Optimism When Talking with Your Loved One
By pro­moting optimism and positivism, I am not encouraging family or friends to pretend, blow smoke, or hide concerns from a loved one. Authentic communi­cation resonates better than pretense. Loved ones become annoyed if they are superficially given feedback that doesn’t seem to fit.

Somewhere between total denial and total disclosure, there exists a reasonable, responsible, and honest way to commu­nicate. Saying that “everything will be fine” or that “everyone survives these days” would be taking optimism to a higher level than I am encouraging. At this too-positive extreme, I have met people whose family members told them that they did not have cancer, even after the medical diagnosis had already been confirmed. Remember that your dialogue and your optimism always need to be based in reality; denying that reality will not help the situation.

The Ups and Downs of Cancer­ville
Reality in Cancerville plays with your mind while it tugs at your heart. Your loved one’s slightest ache or pain can rapidly take everyone down dark and dreary paths. Try to bring a flash­light of hope with you during these emotional jogs. Most of the time, these speed bumps in your loved one’s jour­ney are the equivalent of static on a radio and have no significance whatsoever. Yet, when we are on red alert, every little “noise” be­comes an alarm. I do not expect you or your loved one to stay optimis­tic consistently, but I do encourage you to keep climbing back onto a horse named “Hope” whenever you fall off.

You will have ups and downs in Cancerville; they come with the terri­tory. It is likely you will have your own personal tumbles as your cesspool over­flows in response to someone’s comment, a newspaper article, or what-have-you. You can and need to be optimistic and hopeful while facing Cancerville head-on. However, it is important that your opti­mism be based on the reality of the circumstances.

♦ ♦ ♦ ♦ ♦

Your Emotional Recovery from Breast Cancer

by Ronnie Kaye, MFT

“You have breast cancer.” Those are four words no woman ever wants to hear. In addition to being thrust precipi­tously into an alien world of medical terminology, bewildering choices, and challenging treatments, a woman can also find herself in a state of emotional crisis that can continue through and even beyond the end of treatment.

During the 25 years I have been working with breast cancer survivors on emotional recovery, certain tools have proved extremely useful. Some of them are action steps, while others are simply attitude shifts or revisions of old beliefs. Each tool can help to turn the crisis of breast cancer into an opportunity for personal growth. Here are a few of my favorites.

Survivors ask the right questions.
Survivorship is not the amount of time between diagnosis and the present. That is simply a statistic. Survivorship is an active process. A survivor is someone who trades in the question “Why me?” for the question “What can I learn?” She stops focusing on “How long will I live?” and starts asking, “How well can I live?” Learning and living well are the hall­marks of a survivor.

You are not your body.
You are a heart and a soul. You are your ideas and your emotions, your accomplishments and your dreams. Whatever changes may have resulted from breast cancer treat­ment, you are much more than a body, and you are whole. If you don’t see your­self that way, you may have been blinded by society’s standards. Throw out those standards because they are wrong. Trust that there are wonderful people in the world who are capable of seeing you as you really are. Then go out and find them.

Whatever changes may have resulted from breast cancer treatment, you are much more than a body, and you are whole.

There is a positive side to facing your mortality.
The diagnosis of a life-threatening illness forces people into a personal confrontation with mortality. Once they get past their shock and their grief, they can begin to see life as a gift and to appreciate every moment. Many of the women I have worked with have told me that they completely rearranged their priorities as a result of their breast cancer diagnosis. They made time mat­ter. They learned to say no to things they really didn’t want to do and yes to things they had only allowed them­selves to dream of. They devel­oped themselves spiritually, healed old wounds, re­paired damaged relationships, and found ways to love more and laugh more. Like everyone else on the planet, you won’t be here forever. Resolve to use your time well.

Your feelings are valid.
People who criticize your feelings, or try to get you to change them, do so because they feel helpless or afraid. No one – not even someone else who has had breast cancer – can judge your feelings, because no two people will go through any experi­ence in exactly the same way. There is always a good reason for what you feel, even if you are temporarily out of touch with that reason. Whether you are in the midst of crisis or not, it is essential to have people in your life who will under­stand, accept, and validate your feelings.

Live well even without guarantees.
Normally, when we think of the future, we think of possibilities. We assume that we have a future. We act as though it is guaranteed. After a breast cancer diagnosis, the illusion of that guarantee is often shattered. We feel vulnerable. We fear a recurrence. We are forced to face the reality that anything can hap­pen to anyone at any time. We may fall into despair and disengage from life, unwilling to invest in a future we might not have. In struggling to come to terms with this issue, here is what the survivors I’ve worked with have learned. First, while there are no guarantees after can­cer, there were never any guarantees before cancer either. Vulnerability is a fact of life for all human beings, not just for cancer survivors. Second, no matter whether we live 90 more days or 90 more years, we cannot lose, and cancer can­not win as long as we live as fully as possible and refuse to give up our abil­ity to love and grow and our capacity for joy.

♦ ♦ ♦ ♦ ♦

Giuliana & Bill: Together Through Breast Cancer

by Jessica Webb

Giuliana and Bill Rancic live their lives in the public eye, and they don’t hold anything back. For their Style Network reality show, Giuliana & Bill, they even let cameras in on their struggle to start a family, including failed in vitro fertiliza­tion treatments and a miscarriage – issues many people keep hidden.

The couple has been through the wringer the past few years, but when the E! News host was diagnosed with breast cancer, they insisted the cameras keep rolling. In a recent interview with Coping® magazine, Giuliana and Bill open up about their cancer experience and how – together – they came out on the other side.

Giuliana’s early-stage breast cancer was discovered by accident last Septem­ber when her fertility doctor ordered a mammogram before administering an­other round of IVF treatments. Thinking she was too young for breast cancer, the results caught both Giuliana and Bill off guard. “It’s definitely the worst feeling in the world,” Giuliana says of her breast cancer diagnosis. “It’s the moment no woman wants to live through.”

“It’s gut wrenching,” Bill adds. “As a husband, we want to always be the protector. We’ve got to be the problem solver. And this was a problem that I wasn’t able to solve.”

After a lumpectomy, the couple was hit with more troubling news – cancer­ous cells were still present in Giuliana’s breast. Rather than take her chances with another lumpectomy, Giuliana decided on a double mastectomy with immediate reconstruction.

“I just didn’t want to look over my shoulder for the rest of my life. We spoke to our doctors, and they felt that was the best course of action for me,” Giuliana explains. “We’re very glad we did it.”

“Something like this can either tear couples apart or bring them closer together...”

Just two weeks after her mastec­tomy, Giuliana was back to work. “The truth is, work was a fabulous distrac­tion for me,” she says. “Instead of sitting in bed and thinking about it all day, it was nice to go to work and focus on other things, which I think helped me heal faster.”

Ever the adoring husband, Bill right away embraced his role as caregiver. “As a spouse, the best thing that I was able to do,” Bill says, “was try to take the emotion out of the decision making, and make sure that we made smart de­cisions, not based on emotion, but on factual information and guidance that we’d been given.”

In the beginning, Giuliana admits, “I definitely had some very dark mo­ments, but eventually I tried to focus on the positive in my situation and in my life, not just the negative.”

Though Giuliana was the one with cancer, she says, “It’s so hard on the partner as well.” But Bill was her “rock,” she asserts, lifting her out of her darkest moments.

The couple insists this experience has even had a positive effect on their relationship. “Something like this can either tear couples apart or bring them closer together,” Giuliana says, “and with us, it certainly strengthened our bond. We don’t take life, or any mo­ment we have together, for granted.”

“In this marriage, if one person’s down, the other is there to pick them up.”

Bill, too, realizes just how impor­tant his presence has been. “We’ve had some hurdles along the way, but we’ve never given up,” he says. “We’ve al­ways been there for each other. That’s the most important thing. In this mar­riage, if one person’s down, the other is there to pick them up.”

The couple’s faith has also played a part. “We certainly realize that there was a bigger play at hand here – that God had a master plan for us and that this was just part of my journey,” Giu­liana says. “When something like this happens to you, you turn to your part­ner, and you turn to your faith.” Giuliana now embraces her new life as a survivor. “I feel like I’m part of the sisterhood of wonderful women who go through this journey and start out very scared and frightened, but end up stronger than ever before,” she says.

She and Bill also recently received the news they’ve been waiting years for – they’re having a baby through a gestational carrier. “We feel like the sky’s the limit!” proclaims Giuliana. “It just goes to show that sometimes, even in the darkest of situations, the most beautiful light will eventually emerge. And that happened for us.”

♦ ♦ ♦ ♦ ♦

National Cancer Survivors Day^®
is Sunday, June 3, 2012

 

From family members to close friends, everyone knows someone whose life has been touched by cancer. On Sunday, June 3, 2012, hundreds of communities throughout the world will observe the 25th annual National Cancer Survivors Day. Communities will host events on this day to honor cancer survivors and show that life after a cancer diagnosis can be meaningful, fulfilling, and even inspiring.

National Cancer Survivors Day is a cherished annual worldwide celebration of life. It is a day for everyone, whether you're a cancer survivor, a family member, friend, or medical professional. This day provides an opportunity for all people living with a history of cancer - including America’s 12 million cancer survivors - to connect with each other, celebrate milestones, and recognize the healthcare providers, family, and friends who have supported them along the way. “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 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, dances, inspirational programs, and more

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, hospital, or American Cancer Society office. Or you can host an event of your own. Anyone can download a free planning guide at ncsd.org with everything you need to plan a successful NCSD celebration.

NCSD started in the United States in 1987 and is now also celebrated worldwide in countries including Canada, Australia, India, Saudi Arabia, Italy, and Malaysia.

“Some people still think of cancer as a death sentence,” says Foundation spokesperson, Laura Shipp. “But the fact is that more than 12 million cancer survivors are living – and thriving – in the United States today. National Cancer Survivors Day is an opportunity for everyone to come together and celebrate that there is life after cancer. Some even find that life is more rewarding after facing cancer.”

NCSD started in the United States in 1987 and is now also celebrated worldwide in countries including Canada, Australia, India, Saudi Arabia, Italy, and Malaysia, according to Shipp.

The nonprofit National Cancer Survivors Day Foundation provides free guidance, education, and networking 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 educate the public on 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 and promising new treatments, inadequate or no insurance, difficulty finding employment, and psychosocial struggles. “Despite these obstacles, cancer survivors can lead active, productive, inspiring lives,” says Shipp.

The National Cancer Survivors Day Foundation, along with the NCSD 2012 national sponsors Bristol-Myers Squibb, Coping with Cancer magazine, Genentech, and Lilly USA, LLC, is encouraging a greater commitment to resolving the issues of cancer survivorship. “More resources, research, and increased public awareness is needed to improve the quality of life of cancer survivors,” says Shipp. “The accomplishments of modern science are evident in the ever growing cancer survivor population. However, 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.

About the National Sponsors
The National Sponsors for National Cancer Survivors Day 2012 are:
Bristol-Myers Squibb (bms.com), Coping® with Cancer, (copingmag.com), Genentech (gene.com), and Lilly USA, LLC (lillygrantoffice.com).

More information on cancer and cancer survivorship:
National Cancer Survivors Day: ncsd.org
National Cancer Institute: cancer.gov
American Society of Clinical Oncology: cancer.net
American Cancer Society: cancer.org
American Cancer Society's Cancer Facts & Figures: cancer.org/statistics

♦ ♦ ♦ ♦ ♦

Break Free from Tobacco Use

by Maher Karam-Hage, MD, and Paul Cinciripini, PhD

People recently diagnosed with cancer are trying to adjust to their new reality. They are either working to understand their illness or coping with their treatment and the unwanted side effects of surgery, chemo­therapy, or radiation. Moreover, the daily stressors of life are magnified by loss of income due to inability to work, disruption of family relationships, changes in daily routines, and added strain to ex­isting interpersonal conflicts.

Tobacco use need not be one of these stressors. One of our goals in the tobacco treatment program at MD Anderson Can­cer Center is to help people stop smoking while also learning how to deal with guilt and shame about not being able to quit.

The first question we ask a smoker is, “What are the advantages of smoking?” This question surprises most people be­cause they expect us to barrage them with negative statistics or forcefully try to persuade them to quit. When individu­als answer this question, we hear similar themes in their responses: “Smoking helps me relax when I’m anxious or irritated.” “The cigarette is like my best friend be­cause it’s always there for me.” “It’s a way for me to escape. Whenever I want to get away from people, I can always go outside and smoke.”

Tobacco cessation isn’t just about willpower or changing a habit; it’s a biological process driven by the addic­tive nature of nicotine as a powerful drug. Plus, people often learn to asso­ciate smoking with common activities and situations, such as talking on the phone, driving, drinking coffee or al­cohol, and waking. When you have coupled smoking with these activities for years, disassociating the two actions can be extremely difficult.

For instance, some people automati­cally reach for a cigarette at the conclusion of a meal. Smoking and completing a meal become inextricably linked, with one event even triggering the other. By breaking or changing these connections, you can begin to control your smoking behaviors. You may have spent many years learning these associations, and it can take a long time to change. Behav­ioral counseling can assist in changing these patterns.

While not all smoking triggers can be eliminated, you can employ effective strategies in preparing to quit. In particu­lar, a scheduled reduction technique consists of keeping a record of personal smoking triggers and noting the time of day and the situation when you usually smoke. Once you know your triggers, you will be better prepared to deal with them. Cutting back in a systematic fash­ion helps desensitize you to cigarette triggers and to extinguish your cravings for them.

By making the decision to quit, you must be ready to give up your reasons for smoking and find healthier alterna­tives to achieving the same goals. For example, if smoking serves as a means of relaxation, then you will need to find new ways to relieve stress. One of the easiest relaxation techniques is controlled breathing. By breathing in a slow, con­trolled manner, you can calm your mind and relax your body. Taking a deep breath and holding it for a few seconds before breathing out slowly also has a calming effect. Repeating this process several times helps many smokers reduce tension.

When encouraging people to make the commitment to quit smoking, we often emphasize the importance of rec­ognizing and understanding their reasons for quitting. The health benefits of stop­ping tobacco use are well proven and significant. Quitting smoking translates into better recovery from surgery and better response to radiotherapy and chemotherapy. We often encourage people to write down their reasons for breaking the smoking cycle and to carry these lists around with them as remind­ers. Health, money, and freedom of addiction are some common benefits that people list. In addition to behavioral strategies, a motivational interviewing approach can help those ambivalent about quitting reach the level of com­mitment needed to attempt to quit.

Several medications are also available for tobacco cessation. Those products effectively increase your chance of breaking the dependence on nicotine. Numerous clinical trials have proven that nicotine-replacement medications, such as the patch or gum, and prescrip­tion medicines, including bupropion (Zyban®) and varenicline (Chantix®), are effective tobacco-cessation agents.

The decision and action necessary to stop smoking is not easy, but it is cer­tainly possible. Some people need to try up to ten times to quit, with the average being five or six. Many people, includ­ing those who have smoked for more than 60 years, have successfully stopped smoking. Understanding your motiva­tion for using tobacco is the first step, followed by creating an individualized tobacco-cessation plan. Then pursuing behavioral counseling and starting one or more smoking-cessation medi­cations can dramatically increase your chance of becoming and remaining tobacco free.

♦ ♦ ♦ ♦ ♦

A Look through My Window

by Ryan Hamner

It’s been 14 years since my last bout with Hodgkin lymphoma, but regardless of the medications I was on at the time, I vividly remember looking out the hos­pital window while battling an infection just before my stem-cell transplant. It was an infection that left me with a fever like I had never had before; I couldn’t move and was in a great deal of pain.

At age 21, I had looked out many windows in my life. But this time, it was different. Why? Was it me? Was it my window? Was it the medication? (Well, maybe the latter just a little bit.)

I could barely turn my neck without terrible pain, but I was still able to look out toward the running track of the uni­versity campus hospital where I was being treated. It was a beautiful day: blue skies with a few streaks of white, the sun shining down, and I could tell it was breezy. People were walking and running around the track. Just by looking through my window, I felt I could almost experi­ence “outside” better than most people who actually were outside.

Blue skies. Breezes. Sunshine. These may sound like simple clichés to a lot of people, but not to me.

The reason for this was I had not experienced fresh air since being hos­pitalized. I had not felt the sun on my skin in days, nor had I felt a breeze tickle my face – the simple things. It’s kind of like not realizing how good ice chips can be until you haven’t been able to eat or drink all day because of nausea.

Blue skies. Breezes. Sunshine. These may sound like simple clichés to a lot of people, but not to me. When I looked through my window that day, I was reminded of all the small and simple moments that make life what it is. Life isn’t one big thing; it’s sev­eral tiny moments.

Coffee, for example, isn’t a big thing. But a moment with a friend and a good cup of coffee is priceless.

My experience in the hospital gave me a new appreciation, a new outlook, and, literally, a new window to look through. I had learned that a successful life meant noticing, enjoying, and revel­ing in the small moments. Simple joys are relative; they are different for differ­ent people and for where they are in life.

I remember my friend Jack, who fought a good fight against a brain tumor. His simple joy was Chapstick. Yep, Chapstick. I remember one night while visiting Jack, his dad was in a rush out the door to go grab Jack some more of that Chapstick he loved. To some peo­ple, that’s nothing, but to Jack and his dad, it meant a great deal.

Jack’s story solidified my thoughts on appreciating simplicity. I can remember when he was taken to hospice. His mom pulled me aside, rubbed my arm, and said, “The doctor wanted him off the chemo so he could enjoy just a few more good moments.”

Although I had never been in hospice, this took me right back to looking out my hospital window that day. I knew the feeling – the one where every small and “good” thing counted. One smile. One sip of cola after being sick all day. That one friend you haven’t seen in years who drops in for a visit. I understood.

As I said, it’s been 14 years since my stem-cell transplant and my last treat­ment. I’ve had a few infections and residual effects from all of the therapy, but one of those effects is one that I’ll never lose. And that’s what I see, and feel, when I look through my window.

♦ ♦ ♦ ♦ ♦

Getting the Psychosocial Support You Need

by Alan B. Astrow, MD

At one time, physicians focused mainly on the technical aspects of can­cer treatment and paid little attention to the psychological or social needs of the people they were treating. For instance, men with prostate cancer may have been unprepared for the bodily changes that accompanied surgery or ra­diation, and young people who were cured of leukemia af­ter physically difficult treat­ment courses may not have known what to expect later on.

Today, we understand that each in­dividual must be viewed as a physical, emotional, and spiritual being, not just a collection of body parts. Physicians can help by taking an interest in who you are – your values, important relationships, and goals. By asking a few questions dur­ing a visit, physicians can gain a wealth of knowledge about the person in front of them.

A diagnosis of cancer may change your perspective, but it doesn’t have to leave a scar.

You can also take initiative by express­ing what’s on your mind or by having family and friends help relate their con­cerns to your doctor. Some people feel it’s a sign of weakness to admit they are experiencing emotional, financial, or interpersonal stress, or they may feel uncomfortable raising these issues with their doctors. However, your physician will not be able to help without first knowing your concerns.

In many cancer centers, physicians, nurses, social workers, nutritionists, psy­chologists, and chaplains work as a team. Physicians and nurses should ask you how treatment is going, and if they don’t, you should volunteer the information.

All oncology practices should screen for evidence of distress. Distress refers to “an unpleasant emotional experience of a psychological, social, and/or spiritual nature that may interfere with the abil­ity to cope effectively with cancer, its physical symptoms, and its treatment.” If needed, your physician will refer you to other members of your healthcare team for specific psychosocial services.

If you are experiencing distress, you are not alone. As many as 40 percent of people newly diagnosed with cancer re­port some form of distress. This may include feelings of fear, sadness, or worry, all of which are normal in the face of troubling news. A smaller per­centage of people will have more severe psychological symptoms of anxiety or depression that require further treatment.

Organizations such as SHARE (sharecancersupport.org) and the Cancer Support Community (cancersupportcommunity.org) can serve as reminders that others have gone through treatment and are now well. If you are feeling extremely de­spondent, talk to your doctor about the many new medications available to help manage depression. If you have spiritual or existential concerns, con­sider meeting with a chaplain.

Keep in mind that recovery continues past completion of treatment. In many cancer centers, a dedicated oncology social worker will help to determine the best team member to address your psychosocial needs.

A diagnosis of cancer may change your perspective, but it doesn’t have to leave a scar. Well-organized supportive services can supplement your own strengths and resources, help you get through treatment, and help you find your “new normal.”

♦ ♦ ♦ ♦ ♦

When Your Partner Has Cancer

by Drucilla Brethwaite, MSW, LCSW, OSW-C, and Paul Clark, PhD, LCSW

A cancer diagnosis in the fam­ily can elicit strong emotions – fear, anger, sadness – and those strong emotions can interfere with your ability to problem solve and engage in life. In order to find a “new normal” after diagnosis, it helps to become aware of how you and your partner communi­cate and function as a team.

Communication Styles
Cancer can be a time of unpredictability. Both part­ners often wonder, “What will become of me? Of us?” It’s common for couples to have different emotional reactions to cancer or to struggle with finding the right words to describe their concerns and needs. Knowing how you and your partner are most comfortable with giving and receiving information can minimize communication challenges. For instance, when you are faced with a problem, do you process the situation out loud, or do you tend to take time to mull it over, find the right words, and then talk? What about your partner?

When it comes to receiving infor­mation, are you a “details person” or someone who likes to know the big pic­ture and then select your own details? Too much detail can be burdensome for the person with a big-picture mind­set. However, details can be important when it comes to cancer. It might be beneficial to have the “detailed” part­ner attend physician appointments and keep records, then relay that informa­tion as needed.

Reinforce your partnership by acknowledging how you both have grown from this experience.

Consider also how long or how often cancer should be a topic of conversation. When talking about cancer, if your part­ner appears ready to move on to a new topic, be prepared to do so even if you aren’t. Conversely, if your partner needs to leave the door open to a variety of possibilities when talking about cancer, be careful not to set a limit on the discus­sion even if you’re ready to go forward and make a decision.

Role Reversals
There can be many role changes when your partner has can­cer. And when responsibilities change, “rules” for getting things done are going to get broken. No one is a mind reader, so checking where the dishes go in the dishwasher and anticipating unusual reactions to typical behaviors can help minimize conflict. There is a learning curve with new tasks, and despite all your good intentions, you must accept that you are not going to get it right all the time.

Keep reasonable expectations. Know your strengths, but also be honest about your limitations. Monitor your energy. Nothing can lead more quickly to mis­reading a situation – resulting in conflict – than fatigue. Although a lot has changed, identify what remains the same.

Building the Team
Team­work is essential, and your best team is your old team. Coping with the chal­lenges of cancer involves building on your founda­tion as a couple. What was it that first drew the two of you together? Having trouble remembering? Take out those old photos and engage in some story telling. Ask yourself, “What is the quality I most admire in my partner?” Is he (or she) creative, adventurous, or funny?

Reinforce your partnership by ac­knowledging how you both have grown from this experience. For instance, take turns completing this sentence: “Before cancer, I never had to …, but now I know that I can ….”

Feeling connected can also give you strength. Don’t forget the power of touch; sit close, give each other a hand, a shoulder massage, or simply an un- expected hug. Engage in activities that help maintain relationships with family and friends.

When was the last time the two of you did something for the first time? Sharing new experiences provides an opportunity for self-discovery, emotional expression, and memory making. Sign up for a workshop, or attend a sporting event where you can cheer with the crowd and be swept up in the action.

While strong emotion can present chal­lenges to what was once everyday life, it doesn’t have to change the way you feel about each other. Fos­tering good communication, setting realistic expectations, and working together as a team can help you preserve your identity and intimacy as a couple as you navi­gate your “new normal” after cancer.

♦ ♦ ♦ ♦ ♦

Rebuilding After Breast Cancer

What You Should Know about Breast Reconstruction after Mastectomy

by James H. Boehmler IV, MD

Breast cancer will affect nearly one out of every six women during their lifetime. Although some women can undergo breast-conserving therapy, many women may require or request a mastectomy – surgery that removes all the breast tissue and the nipple. Most women who have had a mastectomy can have breast reconstruction. The Women’s Health and Cancer Rights Act of 1998 mandates that insurance companies provide coverage for all breast reconstruction surgeries, including symmetry procedures for the other “non-cancer” breast.

Who is a Candidate?
In general, all women are eventual candidates for breast reconstruction. The type of reconstruction used may depend on the woman’s body shape, her body-image goals, the need for surgery to her other breast, and her medical history and need for other treatment, including radiation therapy.

Goals of Breast Reconstruction
The main goal of breast reconstruction is for a woman to look normal in clothing without obvious signs of surgery. This allows a woman to be out in public without feeling self-conscious or having to fill a bra with an external prosthesis. Absolute symmetry with the other breast is frequently difficult, particularly when naked, but the majority of reconstructions can provide a level of symmetry that the woman and her surgeon are satisfied with. Frequently, both breasts can be lifted and shaped to give women breasts that have a more youthful appearance.

Timing of Breast Reconstruction
Breast reconstruction can be performed in the “immediate” or “delayed” setting. Immediate breast reconstruction occurs at the time of the mastectomy, so the woman wakes up from surgery with a newly reconstructed breast. Delayed reconstruction occurs after the woman has recovered from her mastectomy and has finished all other cancer treatments.

The main goal of breast reconstruction is for a woman to look normal in clothing without obvious signs of surgery.

In general, a satisfactory breast reconstruction can be performed in either setting, although immediate breast reconstruction can allow for a “skin-sparing mastectomy,” which may have an improved cosmetic appearance, particularly if combined with a tissue-based reconstruction (see below). Regardless of the timing of reconstruction or the method used, it usually takes several procedures to have a finished breast reconstruction. Nipple reconstruction and areola tattooing complete the reconstruction process, though some women opt to forgo these procedures.

Types of Breast Reconstruction
Implant-based breast reconstruction utilizes artificial prostheses that are placed under the mastectomy skin and chest muscles. This is usually done in two stages. In the first stage, a tissue expander (a temporary implant) is placed. It has a valve that allows the tissue expander to be gradually inflated at outpatient office visits in order to stretch the skin. Once enough volume is placed, the woman is taken back to the operating room for removal of the tissue expander and placement of a breast implant, which can be filled with either saline or silicone.

Benefits of implant-based reconstruction include shorter surgery time and hospital stay and less initial post-operative pain. Downsides include the possibility of infection, scarring, tightness, and rupture of the implant. It also requires women to come into the clinic for weekly expansions. The best candidates for implant-based reconstruction are thin women who are undergoing two-sided mastectomies.

Tissue-based breast reconstruction uses extra fat and skin, most commonly from the lower abdomen, to reconstruct the breast. The fat is the “filler” of the breast, and the skin can be used to replace the nipple, areola, and skin removed from the mastectomy. Abdominaltissue breast reconstruction (also called a TRAM or DIEP flap, depending on the technique used) gives the added benefit of a “tummy tuck.”

Benefits of tissue reconstruction of the breast include immediate full-size breast reconstruction (no need for office visits for expansion), improved abdominal contour, longevity of the reconstruction, and improved appearance compared to implant-based reconstructions. Downsides include longer surgery and hospital times, longer recovery from surgery, and additional risks to the abdomen, including hernia and bulge. The best candidates for tissue-based reconstruction are women who have extra tissue to “donate” to their breasts, wish to avoid implant materials, desire the best cosmetic reconstruction, and are willing to undergo the longer recovery time. For women who have undergone radiation therapy, tissue-based reconstructions tend to provide a better long-term reconstruction option than implants.

The breast is an important physical and psychological component of a woman’s body and self-image. These can be permanently altered with a diagnosis of breast cancer. Successfully reconstructing the breast can be an important first step in a woman’s recovery from breast cancer treatment.

♦ ♦ ♦ ♦ ♦

Facing the Fear of Recurrence

by Richard Dickens, LCSW-R

President Franklin D. Roosevelt said it best in his inauguration address in 1933: “The only thing we have to fear is fear itself.” In other words, the event we most fear could change our life, but the fear of that event (which might not even happen) can be more disruptive. Chronic fear is insidious.

Let’s take a moment to look at the good and bad aspects of fear – yes, some fear can be helpful. Human beings are born with the fight-or-flight response. If something in our immediate environment threatens us, our body moves quickly into an action mode, sharpening the brain and energizing the body to rapidly de­cide whether to flee or to fight off this danger. Confronted with potential for future danger, we can be trapped in a chronic state of worry, characterized by shallow breathing, sleeplessness, upset stomach, and chronic fatigue. All of which can have detrimental effects on our health.

You have come through fearful times before and can do it again.

For cancer survivors, fear of recurrence is a legitimate concern. As a survivor, you have already experienced can­cer, gone through treatment, and un­derstandably do not want to do that again. Depending on how far away from treatment you are, you are still adjusting to the “new normal” of your post-cancer life. And you may knowingly be deal­ing with a chronic cancer that will need additional treatment at some point. So as not to become trapped in worry, how can we manage fear?

When it comes to cancer, fear has a past and a future. To manage the future, it helps to review the past. As a survivor, do you remember how scared you were when you began treatment? It seemed daunting at the time, but you got through it. Make time now to identify the strengths that got you through: tenacity, prayer, family and social networks, research, resilience, an expert medical team, hope. You might be surprised by how much strength you had, and still have. Give yourself credit for that. Those strengths will continue to help you confront any potential obstacles ahead.

Fear can also empower you to make important changes. Remember the fight-or-flight response? Many survivors respond to the warning fear creates by changing their diets, exercising more, shedding excess weight, and changing negative lifestyle choices that might af­fect their health. Fear of recurrence can empower you to be an active partici­pant in your well-being.

Other techniques to manage fear in­clude meditation, guided imagery, yoga, tai chi, support groups, qigong, nature walks, and talk therapy. And in instances where fear becomes too much, some will use medication under the guidance of their doctor to manage the effects of long-term fear.

We are born with a full range of emo­tions. Joy, anxiety, love, sadness, guilt, happiness, peace, and even fear all have purpose in our lives. When any emotion, especially fear, begins to overwhelm you, remember two things:

• As a survivor, you have come through fearful times before and can do it again.
• Fear can actually empower you to be more active in your ongoing well-being.

Fear doesn’t need to rob you of your goals and dreams, but your goals and dreams can be the best tools you have against fear.

♦ ♦ ♦ ♦ ♦

Joe Piscopo - Making Every Day Worth It

by Julie McKenna

Joe Piscopo has enjoyed success with projects in many fields including television, film, theater, and nightclubs, as well as with various charities, including Jersey Joe's Gyms and The Positive Impact Foundation. Many of us know Joe best from his hilarious original characters and celebrity impersonations on Saturday Night Live during the early 1980s, such as The Sports Guy, Doug Whiner, David Letterman and Frank Sinatra. Joe feels that a good part of his success in life and with helping others is due to being a thyroid cancer survivor.

As I interview Joe, he points out that he is grateful for many things, such as celebrating his 20th anniversary as a cancer survivor, but mostly for his family. He feels fortunate to have survived cancer without any complications, allowing him to pursue his career and spend time with loved ones. As he talks about his family, his little girl, Alexandra, chatters away about the fascinating things she is finding on the ground, making Joe laugh with affection.

In 1981, Joe did not have any symptoms prior to his diagnosis - he was having a regular check-up when his doctor, feeling Joe's throat, said, "You've got a little tumor in there." Joe, unable to believe it, responded with a chuckle, "Get outta here!"

In December of 1981, doctors took out half of his thyroid. It was frightening for Joe because they had to use a large needle in his neck to perform the biopsy. When the doctor told him not to move while the needle was in his throat, Joe, ever the comedian, replied with, "Yeah, I was thinking about dancing here, Doc, - What do you think?" The biopsy came back benign, but a friend attending New York University suggested that he get a second opinion. It was then that they discovered medullary carcinoma encapsulated in a tumor. Fortunately, it did not require further surgery or treatment.

Having just begun his career with Saturday Night Live, Joe did not want to tell anyone he had cancer.

After that, Joe discovered some of the prejudices associated with cancer survivors. His insurance agent, who was also a friend, told him that he would not be able to insure Joe anymore because he had cancer. He also informed him that if he died of any kind of cancer he would not be covered. Although many policies have changed since then, some discrimination still occurs today. "That's why I have such compassion for cancer patients and AIDS patients because of the prejudice you have to go through," says Joe. Having just begun his career with Saturday Night Live, Joe did not want to tell anyone he had cancer, fearing he would face further prejudices at work.

Joe left Saturday Night Live in 1985 when, after his divorce, he realized he wanted to spend more time with his son, Joey. Joe remarried in 1997 and he and his wife, Kimberly, now have a daughter, Alexandra. "It really draws focus to every day," Joe tells me. "I wake up now, Julie, and I'm the kind of guy who thinks, Hey! I'm out of bed! I made it through another day!"

When I ask Joe if, despite having survived 20 years with no recurrences, he still thinks about the possibility of it coming back, he quickly replies, "Absolutely. Every day." Joe has a new perspective on his life: "Every day is golden. Every day is icing on the cake. I'm sure I irritate people because of my positive attitude, but you have to appreciate every single day."

Joe continues by emphasizing that he doesn't take anything for granted. Surviving 20 years without a recurrence has not made him remiss in getting check-ups - just the opposite. He regularly schedules a physical, calcitonin test, PSA test and a colonoscopy. "I do all the preventive measures that you have to do. And the doctors make sure I do it because of my past history."

Undoubtedly, Joe knows having cancer has made a difference in his life. "I think I became a better person. It makes you concentrate on those less fortunate than you. That's why I started The Positive Impact Foundation that helps at-risk kids," Joe says. "If I didn't go through cancer, I never would have seen the light. I would never think of helping those less fortunate."

As Joe reflects on 20 years of survivorship and his professional and personal accomplishments, his daughter giggles with delight, making Joe laugh, too. "You see, Julie, just like that, I can see my daughter looking at two Daddy Long-Legs walking around, and that right there makes the day worth it."

♦ ♦ ♦ ♦ ♦

Women, Cancer, & Sexuality

by Ralph and Barbara Alterowitz

After cancer, women often feel they have lost a significant part of themselves and their sexuality. Mourning is natural. Women need to learn ways to cope with this loss. But when mourning locks you in, when you let it act as a kind of emotional quicksand, it compounds the tragedy of loss. Many women feel that their cancer has not just changed their sense of self, but has damaged it.

As each woman struggles to adapt to changes in the way she looks and feels, she may also notice the lack of certain sexual feelings. Each woman needs to examine new ways of experiencing her­self. She may need to find new ways to feel sexual pleasure with her partner, to change their sexual script. A first and critical step toward feel­ing sexual is to feel sensual.

Several years ago, when in Paris, we went into a café to get out of the rain and get a cup of wonderful French coffee. Since the place was half empty, we were fortunate enough to get a win­dow table. As we looked out through the hypnotic, almost magical rain, we found ourselves watching one particu­lar woman. Traffic was light, so she crossed the boulevard diagonally in our direction. We watched her as she came toward us. She walked slowly, almost regally.

A first and critical step toward feeling sexual is to feel sensual.

As our glance went from this woman to others, women of all ages, we became aware that they all had one characteristic in common. They exuded sensuality. They were not trying to be sexy. After all, they were just going through part of their daily routine. Yet despite being dressed for the rainy weather in raincoats or casual clothing, and not trying to impress any­one, they all had a special attraction. What came through clearly is that sensuality is, above all, a matter of attitude that carries over into bearing – the way a woman walks, the way she carries herself. It is the unique sense of you.

And how do you get there, to that special attitude? You open yourself up to the beauty of the world: the smell of flowers, the colors of a meadow, the feeling of a breeze on your skin, the touch of a child’s hand, the sound of birds singing, the taste of a fresh peach. They all remind you that you are still a part of this world, a part of its beauty and wonder. Your skin has a wonderful feel and smell of its own; your voice has its unique timbre; your limbs feel a certain way. There beside your partner, you feel the pleasure in different parts of your body as you move together. You inhale the smell of your lover’s body, touch and feel the texture of his or her skin, taste his lips, feel his arms around you.

It’s all about allowing yourself to move from feeling almost unconscious to feeling fully alive in the moment. Appropriately, living in the moment is also called mindfulness. That’s when you allow yourself to stop mentally swinging like a monkey from one thought to another. You are aware of yourself and of all that most closely surrounds you. It is a moment for get­ting to know yourself. That’s when you can feel sensual again – experi­encing life fully with all your senses.

Moving back into the “now” with all your senses is an important part of moving from the negative, fear-driven way of life that often occurs during treatment to a positive, forward-looking way of life. It helps you move on. It helps you to become fully engaged with the world and your partner, adding mean­ing to intimate interactions. With your antennae tuned and your senses recep­tive, incoming signals help you to begin defining yourself positively.

♦ ♦ ♦ ♦ ♦

The Emotional Side Effects of Prostate Cancer

by Joslyn R. Kenowitz, Stephanie Napolitano, and Christian J. Nelson, PhD

Prostate cancer is the most com­mon cancer diagnosed among men. Because of an increase in more effective treatment, the relative five-year survival rate is close to 100 per­cent when discovered in the local or regional stages. However, although survival rates are high, prostate cancer treatment comes with a variety of emo­tional and physical side effects.

Early-Stage Prostate Cancer
Ninety percent of men diagnosed with prostate cancer are diagnosed at an early stage. The most common treatments for this stage include surgery and radiation ther­apy. Although surgery aims to spare the nerves re­sponsible for erections, men report problems with erections up to four years after surgery. In addition, many men experience urinary inconti­nence as a side effect of sur­gery. Radiation therapy can also cause erectile dysfunction, as well as diar­rhea, fatigue, and urinary issues.

In addition to coping with the diag­nosis, men also face psychological difficulties that accompany the physical side effects. Men with erectile dysfunc­tion have more depressive symptoms, as well as frustration, shame, disappoint­ment, and relationship stress. These strong emotional responses can even lead to avoidance of treating erectile dysfunction and reluctance to engage in intimate or sexual situations.

Some men who experience urinary incontinence say that this side effect has a considerable effect on their everyday activities and negatively affects their quality of life. A poorer quality of life can lead to psychological distress, noted by an increase in anxiety, anger, and depression.

Advanced Prostate Cancer
For late-stage prostate cancer, androgen deprivation therapy (hormone therapy) is generally the standard treatment. Hor­mone therapy helps to decrease prostate specific antigen (PSA) levels and man­age disease progression. This type of therapy can also cause a number of side effects, includ­ing hot flashes, osteoporosis, anemia, fatigue, loss of muscle mass, breast en­largement, loss of interest in sex, erectile dys­function, and emotional dis­tress. Many of these side effects may continue to worsen with the length of treatment; in other words, the longer the treatment, the more severe the side effects become.

Some evidence suggests that androgen deprivation may also significantly affect cognition. Several recently published studies indicate that androgen ablation may negatively affect memory, visuo­spatial abilities, psychomotor speed, and executive functioning, which can also lead to an increase in anxiety, depres­sion, emotional distress, anger, and loss of control.

Managing Side Effects
The way you choose to manage these side effects is directly related to how much they will interfere in your everyday life. Many men tend to avoid and ignore the nega­tive emotions associated with a cancer diagnosis and treatment side effects, which correlates to poorer adjustment and greater levels of stress.

Called “wish-fulfilling,” this type of coping often directs cancer survivors’ attention to what could have been, or would have happened, rather than what is happening now. Survivors often get stuck in this cycle of wishing they were feeling differently, rather than actively looking for ways to handle their emotions.

Conversely, researchers have found that information-seeking (an active form of coping) instead of wish-fulfilling leads to better psychological and physical out­comes. When applied to prostate cancer, this approach leads men to gain knowl­edge about the side effects they may encounter and learn how to manage these side effects and reduce their impact on daily activities.

The more informed you are about your illness and ways to manage its side effects, the better chance you have to en­gage in a healthy lifestyle, comply with treatment, and focus on the meaningful as­pects of your life. Confronting is­sues in a direct manner gives you more control and allows you to seek out and use information in a positive and productive way.

♦ ♦ ♦ ♦ ♦

Caring from a Distance

6 Tips for Distance Caregivers

by Polly Mazanec, PhD, CNP

In the past, families often lived around the corner from one another, making it easy to help loved ones who were living with cancer. Now, caregiving is more chal­lenging because many adult children live far away from their parents due to eco­nomic reasons, employment, and school. They are today’s “distance caregivers.”

Who is a distance caregiver?
A dis­tance caregiver is someone who provides emotional and practical support to loved ones but lives too far away to provide day-to-day caregiving and to participate regularly in physician’s office or treat­ment visits. The National Council on Aging estimates that about seven million Americans are long-distance caregivers.

In a pilot study funded by the Na­tional Institutes of Health, distance caregivers of loved ones with cancer reported a need to feel more connected to the cancer care team, be more in­volved in the treatment discussions, and understand more about their loved ones’ well-being. Distance caregivers want to be involved and helpful to their families even though they cannot be physically present.

How can distance caregivers get involved?
Many distance caregivers have said they don’t know how they can be helpful to their families from far away. The good news is there are many things you can do as a distance caregiver.

1. Be a part of the team.
Your loved one’s on­cologist and cancer care team need to know you are part of the family. The oncologist or nurse may not think to ask if there are distance caregivers who would like to be included in the plan of care. Ask your loved one to tell the healthcare team about you and to give them permission to talk with you. Then if you would like to ask the doctor questions about your loved one’s care or condition, you have access to firsthand up-to-date information.

2. Coordinate care from afar.
People undergoing cancer treatment may benefit from having someone clean their home, prepare meals, or help with daily care. From a distance, you can coordinate pro­viders for this care. Contact local home care agencies to get nursing assistance in the home; enlist neighbors, friends, or church support for help with meals; or arrange for regular visits from a local housecleaning service. Offer to manage the bills, as this can often be overwhelm­ing for someone undergoing treatment. This may also free up local caregivers so they can help with needs that can’t be handled from afar.

3. Stay connected to your loved one with cancer.
Many distance caregivers have said that they have wonderful con­versations with their parents during treatment and are able to talk about things other than cancer, such as grandchildren’s activities, sports, politics, and movies. Things they might not talk about if their visits only involved trips to the cancer center or providing physical caregiving.

4. Communicate with the local care­givers.
Caregivers report a sense of pride about being able to “give back” to their loved ones. Since local siblings may be the ones providing the hands-on care, many distance caregivers have said they feel guilty because they can’t do this. Talk openly about what you can do to help and how important it is to you to be able to help. Picking up some of the practical tasks mentioned above can help both you and your local siblings feel good about the family working together.

5. Seek out reputable resources.
There are some wonderful online resources available to help distance caregivers provide care to loved ones with cancer. Many of these emphasize the impor­tance of taking care of yourself as well as your loved one. Examples include Caring from a Distance (www.cfad.org), the National Alliance for Caregiving (www.caregiving.org), and the National Family Caregivers Association (www.nfcacares.org).

6. Consider using technology to feel more connected.
Many distance care­givers wish they could just see firsthand how their loved one looks rather than having to rely on reports from family members. Smartphones and computers with webcams make connecting free and easy.

♦ ♦ ♦ ♦ ♦

I’m Still Me

by B. Diane Landon

I’m still me.
With or without makeup,
I’m still me.

I’m still me.
With or without hair,
With a hat or not.

I’m still me
With or without breasts,
In a bikini or not.

I’m still me
Fat or not,
Tubes attached or not,
I’m still me.

But I would like a pretty dress to wear.
Well
Because
That’s just me.

♦ ♦ ♦ ♦ ♦

Make Music Your Therapy

The Therapeutic Benefits of Music

by Suzanne B. Hanser, EdD, MT-BC

You don’t need advice from me. You have everything you need within you. You may not know that – perhaps when you think of what’s inside you, you tend to think about can­cer. But you do have the inner resources and creativity to help you deal with the thoughts and feelings associated with having cancer.

As a music therapist, I have seen how focusing on music that is important and meaningful can provide an imaginative, new coping strategy. Here are some tips based on my research and clinical work.

Start with a rejuvenating wake-up call.
Begin your day with music. Mu­sic with a strong beat or dance rhythm might make you boogie out of bed, but familiar music that reminds you of good times may also fit the bill. Think of some pieces that are peppy or ener­getic, and play them as you prepare for your day. In fact, whenever you need a boost, turn on the music and let it take you away.

When you are feeling particularly down or upset, make music your friend.

Focus on the familiar.
When you are feeling particularly down or upset, make music your friend. Play your all-time favorite music, or find a tune that you associate with comforting times. Concen­trate on the words or melody, breathe with the rhythm, and focus on every phrase. Let the music bathe you in beau­tiful sounds and great memories. Really listen to the music, and really listen to the effect it is having on you. Close your eyes, and notice any pictures in your mind. Let the music take you to a won­derful place that you can visit whenever you like.

Create your personal jingle.
Is there an affirmation that speaks to you? This may be a popular saying, a line from a favorite poem or song, or some words that carry personal meaning. Your per­sonal jingle could be as simple as, “I can!” or “I am!” or “I am … strong! … a mir­acle! … loved!” – you fill in the blank.

Now put it to a tune that sometimes gets stuck in your head. If nothing comes to mind, think up the first or last line of a favorite song and set your own words to it. Or if you’re feeling creative, make up a melody for your affirmation. When­ever you’re feeling low, just sing it out loud, or if you’re timid, just sing it to yourself.

Release your creativity.
Have you ever wanted to play a musical instrument but never had the opportunity? Maybe it’s time to give it a try. Everyone has some hidden talent. Wouldn’t you like to find yours?

Make music a part of your life, or find the musician inside you, and you might find a creative coping mechanism for life.

♦ ♦ ♦ ♦ ♦

What You Can Do for a Friend with Cancer

by Denise Hazen

Finding out that a friend or loved one has been diagnosed with cancer can be overwhelming. For most of us, our first response is to make a chicken casserole or to offer, “Call me if you need anything.” These are both kind gestures, but what your loved one really needs is for you to take action.

The first step is to crown her “Princess” or declare him “Prince.” You need to put the person you care for on a pedestal and offer the kind of help that maneuvers them through life’s everyday challenges. And at the same time, you need to remember to embrace the journey while celebrating life and friendships.

As a friend, find a reason to celebrate as each milestone is met. Before the Prince or Princess begins treatment, get other friends and loved ones together for a gathering. Find t-shirts, cards, hats, mugs, or other happy gifts with encouraging sayings or funny quotes. If chemotherapy is involved, have a scarf, hat, or do-rag party. Think about throwing a celebration as the Prince or Princess completes chemotherapy or radiation. Show up at the hospital with a cake, party hats, and sparkling cider to rejoice in the completion of this part of the journey.

Everyone loves to receive gifts, but be practical in what you give your Prince or Princess. Flowers and candy are wonderful, but if daily expenses are a challenge, a gift card to the grocery store or gas station would be greatly appreciated.

If chemotherapy is involved, have a scarf, hat, or do-rag party.

Remember, gifts do not have to be expensive to be thoughtful. You can send funny or encouraging cards. Get a group together and try to send the Prince or Princess weekly notes of encouragement. Everyone loves getting a letter in the mail. A weekly run to the video store or setting up a Netflix account will give the Prince or Princess a temporary escape. Know what genre of film they enjoy, and spend an afternoon watching a movie and eating popcorn. Always read the synopsis of the movies you rent and make sure they all have a happy ending.

Thank-you notes are not necessary, but if your Prince or Princess insists on sending them, print up cards that say, “Thank you for your love, thoughts, and prayers.” Help to address and mail the cards to make sharing gratitude an act of pleasure rather than a burden.

The Boy Scouts got it right with their motto “Be Prepared.” If you are going to a doctor’s appointment with your Prince or Princess, make sure that you have an arsenal of supplies. First, make sure any questions for the doctor are written down beforehand so that nothing is forgotten. Also, bring a pen and notebook to write down any comments, suggestions, or advice the doctor may have. Get copies of all lab work and ask for prescription refills if necessary.

Many appointment and treatment days can turn into long periods of waiting. Pack water, crackers, fruit, or anything else your “Royal One” may be craving. Think about getting some magazines or Sudoku books to help pass the time. Designate a carryall for appointment days and stock up prior to all appointments.

Staying in touch and keeping loved ones and friends updated on the treatment progress are important, but communicating the news can be tiring for the Prince or Princess. Having to repeat the same information and answer phone calls and e-mails can be exhausting. Set up a personal Web page through an organization such as carepages.com or caringbridge.org. These sites allow you to log on and read all the latest news related to the Royal One. Pictures can be posted, and friends can write notes of encouragement. Many of these sites allow you to create calendars to organize food delivery and other scheduling needs. Have someone other than the “Royal Family” handle this Web page.

All of these suggestions will be helpful to your Prince or Princess, but the most important is to celebrate your friendships. Let them know how much you value them and that, above all, you are blessed to have them in your life. Remember, just because treatment may end, the celebration should not stop. We need to continue to treat each other as Princes and Princesses and celebrate our presence in each other’s lives.

♦ ♦ ♦ ♦ ♦

Cancer Brain Fog

What Causes It and What You Can Do About It

by Pamela Joyce Shapiro, PhD

Cancer survivors face a number of physical, mental, and psychosocial challenges that diminish quality of life and alter one’s sense of self. Brain changes that affect a person’s cognitive identity – the thinking, capable, intelligent self – can be especially troubling.

What is cancer brain fog?
Following a cancer diagnosis, many survivors experience a sense of cognitive loss – the feeling that one’s mental abilities are slower and less acute than before – as if the brain is in a fog. Problems with memory and concentration are the most common cognitive complaints, and some people report difficulties following directions, finding the right words, or performing simple calculations. Complex tasks, like planning or organizing activities, can be especially challenging for survivors with cognitive symptoms, and multitasking may seem impossible.

Although cancer-related cognitive changes are sometimes called chemo brain or chemo fog, these terms are misleading. Symptoms of cognitive loss often occur before cancer treatment begins and can affect people who are treated with surgery, radiation, and hormonal therapy, as well as those who undergo a course of chemotherapy or immunotherapy.

Many survivors experience a sense of cognitive loss, as if the brain is in a fog.

Approximately 20 to 50 percent of survivors are affected by cognitive loss. Some of these survivors have clinically significant cognitive impairment that persists months or years after treatment. But for most survivors with cognitive loss, the impairment is mild and transient. These deficits may not be noticeable to others, but they weigh heavily on the survivor and are a source of frustration and embarrassment. Because cognition is fundamental to navigating life, communicating with others, and completing tasks, even subtle changes in cognitive abilities can interfere with everyday function.

What causes cancer brain fog?
The causes of cancer-related cognitive changes are unclear. The issue is complicated because many factors can affect cognitive function. Cancer and the drugs used during the course of treating cancer can affect the balance of chemicals and hormones in the brain and contribute to cognitive loss. Fatigue, depression, or feeling stressed or anxious can also affect cognitive function. It’s important to remember that all of these are potential causes of cancer brain fog. Results of studies examining these factors are mixed, and no definitive large-scale studies have been completed.

Inflammation is one potential cause of cancer-related cognitive change. Cancer and many chemotherapeutic agents trigger the release of cytokines, proteins that signal the immune system and cause inflammation. Circulating peripheral cytokines signal cytokine release in the central nervous system, causing structural and functional changes in areas of the brain that support cognitive function. These changes can reduce mental acuity, memory, and processing speed.

Other drugs that may affect cognitive function include hormonal treatments that reduce levels of estrogen or testosterone, drugs given to reduce anxiety, and corticosteroids. Many drugs used for cancer treatment can cause anemia, a risk factor for cognitive loss in older adults.

Psychological distress is a well-known cause of cognitive impairment. Certainly, being diagnosed with cancer is stressful, and cancer treatment presents additional ongoing stressors. Depression, anxiety, stressful life events, and chronic stress cause neural degeneration and volume loss in the hippocampus, an area of the brain essential for learning and memory.

Fatigue is associated with attention difficulties and memory complaints in cancer survivors. It’s unclear if cognitive difficulties in fatigued survivors are caused by sleep disturbance, anemia, symptoms of depression, or some combination of these factors that frequently co-occur with fatigue.

What should you do if you have cancer brain fog?
If you are experiencing cognitive loss, it’s important to assess the extent of your difficulties. Discuss your concerns with a doctor and, if needed, arrange a consultation with a neurologist or clinical neuropsychologist. These professionals can rule out other causes of cognitive loss and recommend a course of care. Take charge of your cognitive health. Many simple lifestyle changes can preserve and optimize cognitive function.

• Reduce stress. Stress damages brain cells. Practice relaxation techniques, meditation, or deep breathing to manage stress and improve focus.
• Reduce cognitive load. Research shows that multitasking impairs the speed and accuracy of performance. Concentrate on the task at hand.
• Learn something new and complex. Your brain has the ability to grow new cells and make new connections when it is challenged.
• Practice cognitive skills. There are many programs and games that train specific attention and memory skills.
• Exercise. Exercise helps the brain grow new cells and reduces risk of dementia. It also reduces stress and fatigue, and improves depression.
• Eat a balanced diet and get enough sleep. Your brain is part of your body and requires nutritional support and rest to function well.

♦ ♦ ♦ ♦ ♦

Richard Petty – Winning the Biggest Race of All

by Cindy Phiffer

Petty may have won $8 million over the span of his racing career, but talking to him is less like interviewing a high-profile athlete and more like talking to a favorite uncle. In a voice that’s best described as a gravelly southern drawl, Petty talks about how his prostate cancer was diagnosed.

“I go for a yearly check-up because of my racing deal, you know what I mean?” Without waiting for an answer, he goes on. “My PSA has always been 2.4 or something like that, and all of a sudden it was 4.8, so they brought me back and checked everything. My doctor sent me over to Dr. Davis, and he did the biopsy that showed a little cancer.”

Petty was given several options for treatment. “I guess they had three or four different ways of doing it,” he says. “They had some pills, and they had the radiation, and then they had this operation, and so we went through everything, and basically what I got out of it was that the operation was the most sure way of getting rid of it for me, and so that’s what I did.”

As with most newly-diagnosed cancer survivors, Petty was surrounded by family and friends. When asked if they were concerned, he chuckles and says, “I’ve been in a lot of different situations before.” Pausing for a moment to let this understatement sink in, he continues, “I just told ’em what was going on. The doctor said he could get rid of it, so it wasn’t a deal where they went into Panic City. I told them right up front everything was going to be okay. I’ve been through other operations and several wrecks and survived, so they didn’t think twice about it not working.”

The support of family and close friends means a lot to Petty. With a note of warmth in his voice, Petty says that it’s a big help, “when you’ve got your family behind you and they believe in what you’re doing.” Although the decision was in his hands, he values the fact that they never wavered in their encouragement. “They all stood by me and said, ‘Hey, go for it,’” he recalls “so that’s what we did.”

Well-known for his relationship with his fans, Petty has been surprised at how many of them have been touched by cancer. “I did not realize that there were that many people out there that’s already had this operation, or had it (prostate cancer) or just the people I talked to that went to get checked,” he says, with a note of amazement in his voice. “You went to races every week and see thousands of people, and it just surprised me that there was that many people that their brother or their daddy had the operation or was gettin’ ready for it or had the symptoms. I didn’t know it was that common a deal.”

“I just went on with my life. I kept figuring what I was supposed to be doin’, next week and next month, and went on with business. Then, once the time came, I went in the hospital and I did my thing and I came out and I started goin’ again.”

“I had a lot of people come and talk to me about it, and I told ’em what my experience was and they weren’t scared then to go and get checked,” he says. “I guess they’d thought about it, but they were worried about goin’ an findin’ somethin’. I say, ‘Go do it and get it over with, and then it’s behind you.’ Of course, once they’d seen me, and I was out of commission I guess for about a week before I could get up and start movin’ around, you know, go back to the shop and go to the races, they didn’t mind so much.”

Since making his racing debut in 1958, Petty has had his share of close calls, but he always manages to come out right-side up. When asked about the biggest challenge cancer has presented, he answers in his usual matter-of-fact manner. “Well, I guess in my mind, I never looked at it from that perspective,” he says. “In my occupation, I’ve been through a bunch of stuff. I had half of my stomach taken out in ’78. I had to have some gallstones taken out. The doctors had been in there before with no complications, so that gave me confidence that the boys that were workin’ on me knew what they were doin’.”

This trust, coupled with his state of fitness, was a winning combination. “I was fortunate in that I was in good health,” Petty admits. “I was 58 years old and was able to bounce right back. The only downside of this thing, was I had to wear a little ‘ketchpan,’ and that was a little inconvenient, but I started getting’ my control back and there’s no sweat from now on.”

Two-and-a-half years past his original diagnosis, Petty is back on track. “I went back three months after the surgery and three months after that, and now I go back every six months,” he explains. Despite his success, he doesn’t claim to know what is best for anyone else. “All I can tell ’em is my experience,” he says. “I just went on with my life. I kept figuring what I was supposed to be doin’, next week and next month, and went on with business. Then, once the time came, I went in the hospital and I did my thing and I came out and I started goin’ again.”

However, there is one piece of advice that Petty isn’t shy about giving. “I tell people, ‘Don’t worry about it; go do it’ because I’ve talked to a lot of people and they say, ‘Well, I don’t know what to do.’ I say, “Go do it and get it over with, and then it’s behind you.’ My deal is, you pay now or pay later. Go ahead and pay now and get it over with so you don’t have to pay later, because if you mess around with it, it’s goin’ to catch up with you. The quicker you get rid of it, the better chance you’ve got to keep it from spreadin’ and then you can go on with your life.”

This man, whose trademark profile (the familiar hat, mustache and sun-glasses) is recognizable around the world, has plenty of reasons to stay healthy. Besides holding many records including the NASCAR record for 513 consecutive Winston Cup races and an international racing record for 41 500-mile victories, he works ceaselessly for a variety of charitable efforts.

In 1992, Petty’s generosity was acknowledged with the Congressional Medal of Honor, the highest U. S. civilian award. With enough trophies to fill a stadium, this might have been received as just another prize. Not so for Petty. “It means a lot to me!” he admits. “That was the highest award, definitely, that I’ve ever received.”

Richard Petty is a racing legend in his own time. Retirement for him has meant anything but retreat. Although he no longer competes behind the wheel, his association with STP celebrates its 26th anniversary this year. This is the longest continuous sponsor relationship in auto racing, an admirable feat in any arena.

What has enabled Petty to keep his eye on the road and a steady hand on the wheel? The same thing that helped him face prostate cancer. “The fear is not in doing it,” Petty says explaining why he does not flinch at harrowing circumstances. “It’s the fear of not doing it.”

This North Carolina native has been around the track a few times. His approach to his own cancer diagnosis is with the same level-headed focus that merited 200 career wins, and the plain spoken attitude that has earned him a permanent spot in the hearts of race fans the world over.

♦ ♦ ♦ ♦ ♦

Managing the Impact of Colorectal Cancer Surgery

 

Immediate and long-term compli­cations that occur after surgical treatment for colorectal cancer can include pain, infection, scarring, adhesions, and fecal incontinence. Managing an ostomy may also be a new part of your life after surgery.

Pain and Infection Immediately after Surgery
Pain and infection are the most common concerns immedi­ately after colon or rectal surgery. It’s important to talk with your healthcare team if you are in pain so you get ad­equate relief when you need it while in the hospital and during your recovery at home. Post-surgical pain can inter­fere with healing, so it is important to manage pain before it becomes a prob­lem. If narcotics are prescribed for pain management, ask your doctor how you can prevent constipation – a common side effect of these drugs.

Signs of infection can include fever, redness, tenderness, and a discharge or pus at the surgery site. If you get a bacterial infection, antibiotics will be prescribed. Ask your healthcare team about signs of infection to watch for when you return home.

Scarring and Adhesions
Surgery for colorectal cancer involves opening the abdomen, the site of many impor­tant organs, including your small and large intestines. Since the intestines are a long, flexible tube of tissue in constant motion as food is digested and waste is excreted, surgery can cause adhesions (scar tissue) that prevent the intestines from moving freely. If food is unable to move easily through the intestines dur­ing the digestive process, the intestines can become obstructed (or blocked), a painful and dangerous complication.

Before your operation, ask your surgeon about the plan to reduce the risk of adhesions for you.

Surgeons use special techniques during surgery to decrease the risk of adhesions. These include using biode­gradable or absorbable membranes or gels to separate organs at the end of surgery, or performing laparoscopic surgery, which reduces the size of the incision and manipulation of the ab­dominal organs. Before your operation, ask your surgeon about the plan to re­duce the risk of adhesions for you.

Fecal Incontinence
The normal mechanisms that control bowel move­ments include muscles and nerves in the rectum and anus. If surgery or ra­diation damages the rectal nerves or muscles, you may not be able to com­pletely control your bowel movements. They may be more frequent or urgent, or you may not know when your bowels are moving. To deal with this situation, you may need to wear pads and change them regularly.

This condition can improve over time, and you may be able to learn ex­ercises to strengthen the muscles in the anus to improve control. Changes in your diet can also be helpful. A food diary (where you write down all of the foods you eat in a day or over time) can help you identify which foods create problems so you can avoid them.

If you are unable to control your bowel movements, don’t be shy – talk to your doctor or nurse about strategies to manage the problem. In extreme cases, if you are unable to control bowel move­ments over a long period of time, an ostomy may be considered.

Ostomy
An ostomy creates a new path for stool by surgically connecting the end of the colon or small intestine to a stoma (an opening in your abdo­men). An ostomy pouch that fastens to the skin over the stoma is used to collect waste. A colostomy bypasses part of the large intestine (colon), and is used more frequently in rectal cancer than in colon cancer. An ileostomy by­passes the entire colon and is made at the end of the small intestine (ileum).

The need for a colostomy or ileos­tomy after surgery for colorectal cancer depends on many factors, including the type of surgery you have, which part of the colon or rectum is removed, and how much time was available to pre­pare for surgery. Frequently, a reversible ostomy is used to allow tissues to heal safely after surgery. Once recovery is complete, another surgery (colostomy or ileostomy reversal) will reconnect the colon or rectum, so bowel move­ments can pass through the anus again.

If emergency surgery is required because the colon or rectum is blocked by cancer, there may be inadequate time to cleanse the intestinal tract and empty out stool. An ostomy may be created during emergency surgery to prevent infection or complications, and you may have little time to prepare yourself for this significant change in your life.

If surgery is not an emergency, talk to your healthcare team about the possibility that an ostomy will be needed. Permanent ostomies are uncommon after surgery for colon or rectal can­cer, except for cancers located low in the rectum.

Many people dread having an ostomy but find that once they have one, they can lead an almost entirely normal life. Still, it takes some getting used to, and it helps to know what to expect. An ostomy nurse or support group can help you adjust.

Before you leave the hospital with a stoma, an ostomy nurse, who specializes in care of the ostomy and stoma, will show you how to empty and replace the pouch, care for the skin around your stoma, manage your diet and daily activities, and recognize potential problems.

Once you leave the hospital, a visit­ing ostomy nurse can help you learn to manage your ostomy at home, recom­mend alternative pouching systems, and troubleshoot problems. You may have to try different pouching systems before you find the one that’s best for you.

♦ ♦ ♦ ♦ ♦

Finding Humor in the Midst of Cancer

by Jim Higley

Cancer isn’t funny. And I wasn’t doing any laughing the first few days after I received my confirming biopsy results.

Sunday was the surprise call from my doctor.

Monday was the day of research.

Tuesday was meeting with the doc­tor to finalize plans.

Wednesday was sharing the news with friends.

By Wednesday night, after the word got out, I had nearly 30 messages on my answering machine at home.

Each message was a carbon copy of the previous one. Jim, I just heard what’s going on. I am so sorry. But I know you’ll be fine. You’re strong. I know you’re buried right now, but call me when you can. And let me know if there is anything I can do for you.

Finally, I found something that made me laugh.

These were messages oozing with love. I knew and appreciated that. I just found the quantity of calls funny. Crazy. Unexpected. Who gets 30 messages? Was I really going to call people back? And what was I supposed to tell people to do? There were probably so many things I did or would need, but I didn’t have a clue at that moment. What I did have was the return of my warped sense of humor.

For those of you wondering what you can do, I’m now registered at Crate and Barrel, Eddie Bauer, and the local hardware store.

I’ve got an idea, I thought to myself. Maybe I could tell all these people there is something they can do! I’ll tell them I’m registered! Brides do it. Even grooms do it. Why can’t a sick person?!

The absurdity of my idea made me laugh out loud. It was as if the release valve on a pressure cooker was finally opening up, and a bunch of steam was spewing out into the air.

I could only imagine the confusion on people’s faces if they actually heard this silliness. Most would know I was teasing, of course. But I’m sure a few people would be stumped – especially if I did a new greeting on my answer­ing machine:

Hi, you’ve reached the Higley house. We’re swamped with all this cancer crap. For those of you wondering what you can do, I’m now registered at Crate and Barrel, Eddie Bauer, and the local hardware store. Thanks for your concern!

So maybe that was good for a quick chuckle and a little escape. But the truth was, I was scared. 24/7 seriousness is draining. It feels like a constant beating with a stick.

Initially, the idea of laughing was hard to even imagine. I’d see funny things on television or in the newspaper and know I should laugh, but I couldn’t. It’s really hard to laugh at the outside world when your own world is crumbling.

But when you are raised with the gift of laughter, as I was, it can’t stay suppressed forever. It’s too powerful. Thank goodness for that. I eventually could see bits of “ha-ha” in my own life. Certainly not in the cancer, but in the mind-blowing circumstances that suddenly consumed my life. And laugh­ing at parts of those experiences made me feel a little more alive.

The funniest part of it all was that the more I allowed myself to laugh, the more therapeutic my tears became.

Both ends of the spectrum of emo­tions had meaning.

♦ ♦ ♦ ♦ ♦

Combating Cancer-Related Fatigue

by Ann M. Berger, PhD, APRN, AOCNS, FAAN

Do you often feel a sense of physi­cal, emotional, or mental tiredness that limits your ability to do usual activities? Do you think that cancer or cancer treat­ment makes you feel exhausted? If you answered yes, you may be experiencing what your healthcare team refers to as cancer-related fatigue.

Most cancer survivors report fatigue before, during, and after cancer treat­ment. Fatigue often occurs with other symptoms, such as pain and poor sleep. Some survivors have said it is more distressing than all other symptoms they have experienced. Although the major­ity of survivors feel less fatigue after completing treatments, some report fatigue that interferes with usual func­tioning for years afterward.

Recognizing Fatigue
The first step in combating fatigue is to recognize that you feel fatigued. Next, you need to notify your doctor or nurse. This starts a process of screening and assessing your fatigue. You will be asked to rate your fatigue over the past seven days on a scale of 0 to 10. Your doctor or nurse will use your answer to develop a fatigue-management plan. Managing fatigue is important to your well-being and not a trivial issue. Your healthcare team’s goal is to reduce the distress fatigue causes so you can enjoy life. It is very important to discuss any concerns about fatigue with your healthcare provider.

Knowing your pattern of fatigue makes it easier to plan daily activities at home and at work.

If you rate your fatigue as 4 or higher on a 10-point scale, further evaluation is recommended. Important areas to assess and possibly treat include pain, emotional distress, anemia, sleep dis­turbances, and nutritional deficits or imbalances. If you have been diagnosed with other chronic diseases, such as hypertension, diabetes, or arthritis, they need to be in good control so side effects from those treatments don’t escalate your cancer-related fatigue.

Conserving Your Energy
An im­portant general strategy for managing fatigue is conserving energy. You can do this by setting priorities, pacing your­self, and delegating energy-draining tasks.

Start by keeping track of your daily patterns using a journal, computer pro­gram, or Smartphone app. This will help you identify when your fatigue is better or worse. Knowing your pattern of fatigue makes it easier to plan daily activities at home and at work. Plan­ning the active part of your day around times of less fatigue allows you to fit in activities such as shopping, exercise, and naps. (Speaking of naps, you should limit naps to less than one hour to avoid interfering with nighttime sleep.) An­other effective way to conserve energy is to figure out which activities worsen your fatigue and delegate them to others.

In addition, physical activity, psycho­social interventions, massage, and fatigue education have all been found to allevi­ate cancer-related fatigue. With the help of your doctor or nurse, you can decide what will work best for you.

Reducing Physical Fatigue
Re­search has shown that regular physical activity is the most effective strategy for reducing physical fatigue. Beginning or continuing an exercise program, espe­cially a program with both resistance training (light weightlifting) and en­durance activities (walking, jogging, swimming), may help you feel less fatigued. Remember to discuss any ex­ercise program that you are considering with your doctor or nurse. He or she may refer you to a rehabilitation specialist to help you develop a plan to increase activity safely and without increasing your fatigue. Massage therapy may also reduce fatigue during cancer therapy.

Relieving Emotional and Mental Fatigue
You can select from several strategies that help relieve emotional and mental fatigue, including cognitive therapy, relaxation techniques, counsel­ing, support groups, hypnosis, and biofeedback. Support groups, held both in person and online, can help you cope with your feelings of fatigue and learn how others are coping. Journaling can be helpful; so can professional counseling. These therapies allow you to express your emotions about your diagnosis, treatment, and persistent fa­tigue. They can also provide you with support and encourage­ment from others experiencing fatigue.

Although there is less evi­dence in support of these therapies, both nutritional coun­seling and cognitive behavioral therapy for insomnia may be helpful. Your doc­tor or nurse may refer you to a dietitian who works with people with cancer or a sleep center that diagnoses and treats sleep disorders if these are identified as factors that may be contributing to your persistent fatigue.

♦ ♦ ♦ ♦ ♦

Cancer Support Community Launches Navigating Cancer Cost Toolkit

 

In a study conducted by the Cancer Support Community, more than 72 per­cent of people with cancer surveyed experienced some degree of emotional distress from managing cancer care costs. To help meet the needs of people affected by the financial burden of cancer care, the Cancer Support Com­munity has released the third edition of its book Frankly Speaking About Cancer: Coping with the Cost of Care.

A practical guide to navigating the complex challenges of managing the expenses associated with the cost of cancer care, the publication includes information on frequently asked questions, such as:

To order or download a copy, visit cancersupportcommunity.org.

♦ ♦ ♦ ♦ ♦

On the Other Side of the Diagnosis

by Mary-Jo Murphy, MS, RN, CDE

“I am a nurse,” I say to the surgeon, as if that explains that he can be differ­ent with me, less guarded, more frank. I’m trying to tell him, I will understand your jargon. Skip the euphemisms. In fact, I will be alert for anything that smacks of not telling the whole truth.

“And,” I add as he pulls up a stool and sits at eye level across from me, “I was married to a general surgeon for 20 years.”

“I’m sorry,” he says with a laugh. His response relaxes me. I can tell he wants me to trust him.

I’d rather be with my ex-husband’s partner, someone whose skills I know, but Stu is four hundred miles away. So I ask the questions I’m sure my surgeon is ex­pecting. His credentials? I’m impressed. He trained at a major university. He’s been in practice for three decades. He’s board certified. All this means something to me.

I believe he can handle my care, re­move my hemorrhoid turned polyp. This is no biggie for him.

After his brief exam, I feel even more reassured. “It’s soft. It doesn’t feel ma­lignant,” he says with confidence. Minutes before, in the waiting room, I’d prayed and prayed, “Please let this all turn out to be nothing.”

From this moment, from the speaking of those words, nothing will ever be the same for me.

Maybe it is nothing. He feels these things all the time. I sigh and feel some further relief. I take a deep breath and allow myself to smile. The biopsy result that we wait for now is just a formal­ity, isn’t it?

Moments later, as he stares at my report, his face is suddenly devoid of the professional composure that doctors are so practiced at. I know from his shocked expression that it isn’t nothing.

“I can’t believe it,” he says staring at the paper. “It’s squamous cell carci­noma. You have anal cancer.”

I don’t ask him to repeat my diagno­sis. I’ve seen too much to ask the usual questions: Are you sure? Why me? My mind is replete with the experiences of people with cancer whom I’ve cared for. Denial has been trained out of me. Dis­belief and terror are instantly transformed into the understanding that from this mo­ment, from the speaking of those words, nothing will ever be the same for me.

Now, trapped inside a body with a diagnosis attached, the most unexpected thing happens. Without a conscious thought, words form into sentences that prioritize in an instant what my values are, what beliefs I took for granted.

“I have things to do,” I say as I pic­ture my unpublished manuscripts, my unpainted paintings. “My sons still need me. They’re in their twenties, but they …”

The doctor finished my sentence, “They still want you there.” I nod.

Next I see my mother, healthy, still living alone. Our family doesn’t have cancer, I think. But I do.

“Maybe I won’t live to be as old as my mother,” I say. “She’s 92.”

“I’ll help you with this,” he responds.

Just this morning, I’d been a nurse, a diabetes educator with special skills. In my starched lab coat, I’d walked into the room of a perfect stranger and told him with three words that nothing would ever be the same: “You have diabetes.” Like my surgeon, I’ve looked into the face of disbelief time and again, and like him, I’ve delivered a practiced response. “I understand how you feel,” I’d say, believing in my heart what I said was true.

Now I was on the other side. And I didn’t understand a thing.

♦ ♦ ♦ ♦ ♦

New Treatment Approved for Most Common Type of Skin Cancer

 

The U.S. Food and Drug Administration has approved Genentech’s™ (vismodegib) for the treat­ment of adults with basal cell carcinoma (the most common type of skin cancer) that has spread to other parts of the body, that has come back after surgery, or that their healthcare provider decides can­not be treated with surgery or radiation. Erivedge, a capsule that is taken orally once a day, is the first FDA-approved medicine for people with advanced forms of basal cell carcinoma.

The safety and effectiveness of Eri­vedge was evaluated in a clinical study of 96 people with locally advanced or meta­static basal cell carcinoma. Of the study participants with metastatic disease re­ceiving Erivedge, 30 percent experienced a partial response, and 43 percent of par­ticipants with locally advanced disease experienced a complete or partial response.

Erivedge is being approved with a boxed warning alerting users and healthcare professionals of the potential risk of severe birth defects or death to a fetus. Pregnancy status must be verified prior to the start of Erivedge treatment. Both males and females starting this drug should be warned about these risks and the need for birth control.

♦ ♦ ♦ ♦ ♦

A Different Take on Breast Cancer

by Liza Vann

People say I have a different take on this disease – that I didn’t do it like everyone else. You see, it didn’t seem to bother me that I had cancer. Cancer doesn’t have to be harder than anything else that will ever happen to you. Having cancer doesn’t have to be harder than not having cancer. It’s just different. It just is what it is.

Which leads me to a confession, I was never afraid of this disease. I have not spent one nanosecond being afraid of this disease. And, in truth, I don’t really understand it. Of course, I understand the concept, but I have never known any woman – or any person for that matter – who was ever helped by fear, who wasn’t better the moment she put it be­hind her. Now that doesn’t mean deny it. If anything, acknowledge it immediately, but don’t think that fear is inevitable.

Confession: I have not spent one nanosecond being afraid of this disease.

You might be afraid, but you don’t have to be. There has never been a better time to have breast cancer. Our tools for detection are better. Our treatment options are better. And I can’t tell you how happy I was when The New England Journal of Medicine finally published a study that showed our surgical options are better. It’s no longer one-size-fits-all; we have a shopping mall full of good choices.

But before heading into that shopping mall of choices, a word of caution – no impulse buying. Think of how many shoes you try on to find that right pair. You might not want to “shop ‘til you drop,” but you definitely don’t want to take the first pair off the rack.

Wait a minute. Cancer is like a shop­ping trip to the mall? Close enough. Cancer is doable. It’s just another turn in the road. Sure, it’s a turn anyone would prefer to bypass, but not one that will keep you from getting on down the highway.

But that’s just my take.

♦ ♦ ♦ ♦ ♦

Holding on to Hope

by Clare Butt, RN, MSN, AOCN, PhD(c)

For most people, hope is impor­tant throughout their lives’ journeys. However, it can be­come even more so after receiving a cancer diagnosis. Cancer can change a person’s view of life, and holding on to hope during these times of change can be a challenge. Surprisingly, however, many people find their hope becomes stronger because of cancer.

So what is hope? A good description of hope can be found in Emily Dickin­son’s poem “Hope is the Thing with Feathers”:

Emily Dickinson has captured the con­cept of hope by portraying it as a bird. This image fits well with what some survivors experience.

Capturing the idea of hope is difficult because it is alive and always changing, just as a bird is always on the move. However, we can follow the bird’s ac­tion and flight and learn something about its nature. Dickinson’s image of the bird, which “perches in the soul,” embodies the need for this perching or presence of hope throughout all of life. While sing­ing “the tune without the words,” it “never stops at all.”

It’s easy to imagine the wings of a bird expanding to the left and to the right, flapping in the air, and adjusting to the variations in the wind, thus pro­ducing flight. Applied to hope, the challenges of living with cancer can be said to provide the psychic energy that can expand a person’s viewpoint, just as the wings of the bird expand to provide for flight. Indeed, an ex­panded view of the world can be seen from the perspective of flight. Many cancer survivors find new meaning through illness, redefining what is im­portant to them.

According to Emily Dickinson, hope can be found in every circumstance, even “in the chillest land, and on the strangest sea.”

Opposites may exist in a person’s experiences during the journey through cancer. These may include sorrow and gratitude, inner strength and weakened abilities, withdrawing and embracing. Perseverance or persistent resolve may be the factor that kindles or gives energy to the unfolding that leads to uplifting possibilities. This uplifting, once again, brings to mind a bird in flight.

Emily Dickinson’s poem goes on to say that hope is heard “sweetest in the gale.” Hope’s capacity to endure is great, since, as the poem states, “sore must be the storm that could abash the little bird that kept so many warm.” Some­times cancer survivors may struggle to bring life into balance. Some find that reflecting on their lives’ journeys in order to bring it all together meaning­fully is aided by the cancer experience. Hope is paramount as the past is revis­ited and renewed from the perspective of the present.

According to Emily Dickinson, hope can be found in every circumstance, even “in the chillest land, and on the strangest sea.” But how do you hold on to hope when times are tough? Each person must find his or her own ways to hold on to hope. See if any of these suggestions may work for you:

• Look for meaning in things that are larger than you. Maybe it’s through nature, spirituality, or connectedness to a faith community.
• Anticipate survival. Many people have gone before you. Picture yourself among them – after treatment and doing well.
• Ask ques­tions. You have a right to know about your care. Don’t be afraid to ask the ques­tions that can put your wor­ries to rest.
• Seek affirming relationships. Fam­ily, friends, and pets can be a source of comfort to get you through hard times.
• Turn to your inner resources. We all have more inside than we might imagine. Be gentle with yourself, and celebrate the little things in life that bring you joy.

♦ ♦ ♦ ♦ ♦

Treating Advanced Prostate Cancer

 

If cancer has spread to another location in the body, it’s called metastatic cancer. The standard treatment for metastatic prostate cancer is hormone therapy. Generally, prostate cancer will develop the ability to grow without using male sex hormones. This is called castrationresistant prostate cancer.

People with this diagnosis are encouraged to talk with doctors who are experienced in treating this stage of cancer, because there can be different opinions about the best treatment plan. Seek a second opinion before starting treatment so you are comfortable with the treatment plan chosen. This discussion may include clinical trials. Although there is no cure for advanced prostate cancer, it is often treatable. Many men outlive their prostate cancer, even those with advanced disease. Often, the prostate cancer grows slowly, and there are now effective treatment options that extend life even further.

Your healthcare team may recommend a treatment plan that includes vaccine therapy with sipuleucel-T (Provenge®), chemotherapy with docetaxel, or clinical trials. If you have pain, radiation therapy may also be recommended.

Seek a second opinion before starting treatment so you are comfortable with the treatment plan chosen.

Vaccine Therapy
Sipuleucel-T (Provenge) is a form of immunotherapy which 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 bolster, target, or restore immune system function.

In 2010, the FDA approved sipuleucel-T for men with castration-resistant metastatic prostate cancer with few or no symptoms, because in research studies it increased survival by about four months compared to no treatment. Sipuleucel-T is adapted for each individual. Before treatment, blood is removed from the person in a process called leukapheresis. Special immune cells are separated from his blood, modified in the laboratory, and then put back in the person receiving treatment. At this point, his immune system may recognize and kill the prostate cancer cells. Because this treatment is tailored for each person, it may not be available in all areas.

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 of time. Someone may receive one drug at a time or combinations of different drugs at the same time.

Chemotherapy for prostate cancer is given intravenously, and it may help people with advanced or hormone-refractory prostate cancer. There is no standard chemotherapy for prostate cancer, but clinical trials are exploring chemotherapy for advanced prostate cancer. The most popular, current approach is the use of a drug called docetaxel given with a steroid called prednisone. This combination has been shown to help men with advanced prostate cancer live longer than another chemotherapy, mitoxantrone (Novantrone®), which is most useful for controlling prostate cancer symptoms.

The FDA has approved the drugs mitoxantrone, docetaxel, and cabazitaxel (Jevtana®) for use in men with prostate cancer that is resistant to hormone therapy. Cabazitaxel is similar to docetaxel, but research studies have shown that it can be effective for prostate cancer that is resistant to docetaxel. The side effects are similar to docetaxel and include low white blood cell counts, increased risk of infections, allergic reactions, nausea, vomiting, diarrhea, and kidney and liver problems.

Estramustine (Emcyt®), another FDA-approved drug, is being used much less often because of newer drugs that can prolong life and because of its side effects, which include an increased risk of blood clots. Many new medications for prostate cancer are in development and may be available in clinical trials. The side effects of chemotherapy depend on the individual and the dose used, but they can include fatigue, risk of infection, nausea and vomiting, loss of appetite, and diarrhea. These side effects usually go away once treatment is finished.

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.

Hormone Therapy
Some types of hormone therapy may be used to treat advanced cancer.

Because prostate cancer growth is driven by male sex hormones, called androgens, lowering levels of these hormones can help slow the growth of the cancer. Hormone treatment is also called androgen ablation or androgendeprivation therapy. The most common androgen is testosterone. Testosterone levels in the body can be lowered either surgically, with surgical castration (removal of the testicles), or with drugs that turn off the function of the testicles.

Hormone therapy is used to treat prostate cancer that has continued to grow after surgery and radiation therapy, or if it has spread throughout the body when diagnosed. More recently, hormone therapy has also been used with radiation therapy for men with a cancer that is more likely to recur. For some men, hormone therapy will be used first to shrink a tumor before radiation therapy or surgery. In some men with prostate cancer that has spread locally, called locally advanced prostate cancer, hormone therapy is given before, during, and after radiation therapy for three years. Hormone therapy is also an option for men who have prostate cancer that has spread to the lymph nodes (found after radical prostatectomy) as adjuvant therapy (treatment that is given after the first treatment). It may also be given for up to three years for men with intermediate-risk or high-risk cancer.

It is important to have open and honest conversations with your doctor and healthcare team.

Traditionally, hormone therapy was used until it stopped controlling the cancer. Then the cancer was called hormone refractory (meaning that the hormone therapy has stopped working), and other treatment options were considered. Recently, researchers have begun studying intermittent hormone therapy, which is hormone therapy that is given for certain periods and then stopped temporarily according to a schedule. Giving hormones in this way appears to lower the symptoms of this therapy. In addition, intermittent hormone therapy may possibly maintain hormone responsiveness for a longer time than standard (continuous) hormone treatment; this approach is currently being tested in clinical trials.

One important side effect of hormone therapy is the risk of developing metabolic syndrome. Metabolic syndrome is a set of conditions, such as high levels of blood cholesterol and high blood pressure that increases a person’s risk of heart disease, stroke, and diabetes. Currently, it is not certain how often this happens or exactly why it happens, but it is quite clear that men who receive a surgical or medical castration (even a temporary medical castration) with hormone therapy have an increased risk of developing metabolic syndrome. The risks and benefits of castration should be carefully discussed with your doctor. For men with metastatic prostate cancer, especially if it is advanced and causing symptoms, most doctors believe that the benefits of castration far outweigh the risks of metabolic syndrome.

Palliative Care
In addition to treatment to slow, stop, or eliminate the cancer (also called disease-directed treatment), an important part of cancer care is relieving a person’s symptoms and side effects. It includes supporting the patient with his or her physical, emotional, and social needs, an approach called palliative or supportive care. People often receive disease-directed therapy and treatment to ease symptoms at the same time.

If disease-directed treatment is not successful, this may also be called resistant or advanced cancer. This diagnosis is stressful, and it may be difficult to discuss. However, it is important to have open and honest conversations with your doctor and healthcare team to express your feelings, preferences, and concerns. The healthcare team is there to help, and many team members have special skills, experience, and knowledge to support people with cancer and their families.

A few drugs can help treat the symptoms of advanced cancer to enhance the quality of the person’s life.

Chemotherapy
Chemotherapy is most commonly used for men with advanced, hormone-refractory prostate cancer. It can be effective in relieving symptoms, such as pain, weight loss, and fatigue, and may prolong life for some people.

Strontium and samarium
Given by injection, these radioactive substances are absorbed near the area of bone pain. The radiation that is released helps relieve the pain, probably by causing the tumor in the bone to shrink.

Zoledronic acid(Zometa®)
Given by injection, zoledronic acid reduces the level of calcium in the blood and causes fewer bone complications, such as pain, fracture, and need for surgery, from metastases. A high calcium level is called hypercalcemia and is sometimes found in men with advanced prostate cancer.

Denosumab (Prolia®, Xgeva®)
Recent research has looked at the use of denosumab to help slow the damage to bone from metastases and reduce bone side effects for men with castration-resistant prostate cancer. Results indicate that denosumab may be more effective at protecting the bones than zoledronic acid.

♦ ♦ ♦ ♦ ♦

Getting Back to Work after Cancer

 

Once your cancer treatment is complete or nearing comple­tion and you’ve been cleared to return to work, at least part time, more challenges await. Here are some suggestions for smoothing the transi­tion from “person with cancer” back to valued employee.

Easing Back into the Routine
If you can set the tone as a relaxed, confi­dent cancer survivor, chances are those around you may be less uptight, too. If you can see your return to work as a major step forward in your recovery, that will affect your attitude in the most positive way.

After your medical leave is over, gear up for the next challenge: making your re-entry to your job as comfortable as possible. For cancer survivors, return­ing to work often brings mixed emotions – relief, trepidation, hope – and perhaps awkwardness. Even if you are sure you’re ready to return, you may worry: Will you encounter skepticism or sup­port? That depends partly on how you approach the situation.

Follow Your Style
If you’re naturally talkative and share information easily, you’ll probably want to update coworkers and your boss on your re­covery. If you’re more private, just tell everyone you’re doing fine and let it go at that. (You can expect your supervisor to honor your requests for confidentiality.) How much you divulge can also depend on your work environ­ment and whether other employees have taken time off for cancer treat­ment and returned to work successfully.

Resuming your routine underscores the reality that you’ve transitioned from “person with cancer” to employee.

Get Up to Speed
It’s important to feel confident again about your job abilities. How do you do so?

• Test your psyche. Just as important as feeling capable of doing the job is feeling psychologically up to speed. If you’re feeling below par, you might seek one-on-one counseling from a social worker or a therapist, or join a support group of other cancer survi­vors returning to work.
• Evaluate your readiness to work. Are you ready to come back full time or part time? If part time sounds more feasible, consider what accommoda­tions you will need. Do mornings work better, or afternoons? Take into account any medications you are on and their possible side effects. Will they impair your ability to drive to work, for in­stance, or to stay alert during marathon meetings?
• Attend workshops or seminars to refresh your skills.
• Attend industry events to keep your knowledge up to date.

Make a Plan
Once you’ve decided whether you are fit to return full time or part time, make a schedule, see if it fits your employer’s needs, and then prepare to follow it.

Take a look at your workstation. Does it need to be redesigned or fitted with equipment such as back support or other devices to make you more comfortable?

Focus on the work itself, even if catching up means tending to tedious tasks such as returning a boatload of telephone calls or tackling a moun­tain of mail. Resuming your routine underscores the reality that you’ve transitioned from “person with cancer” to employee.

Your Cancer History, the Law, and Your Insurance
There are a number of laws that may aid in your transition back to work and in getting the most out of your insurance. For example, after you return to work, you will probably need to take time off for follow-up visits and checkups, or maybe for remaining chemotherapy sessions. Be aware that you’re entitled to the benefits of the Family and Medi­cal Leave Act (FMLA) if you work for a company with 50 or more employers. Under that law, you can take the leave in small increments, even as little as one-hour blocks of time.

If you were employed and had health insurance before the diagnosis of can­cer, took approved time off, and are back to work, there should be no effect on your group health insurance at all. If you are covered by a group plan, you can’t be singled out for your cancer history. Your premiums can’t go up higher than others’ premiums, and you can’t be dropped from the group plan due to the cancer. The federal law known as HIPAA (Health Insurance Portability and Accountability Act of 1996) protects the rights of people in group health plans.

There are a number of laws that may aid in your transition back to work and in getting the most out of your insurance.

Even if you leave one group health insurance plan, you have protection in transitioning to another group plan. Another law called COBRA (Consoli­dated Omnibus Budget Reconciliation Act) provides continuation of group health coverage that might otherwise be terminated. It offers the right to tem­porary continuation of health coverage under certain conditions.

One of the main provisions of the recent healthcare reform implements new regulations that will prevent all health insurers from denying coverage to people for any reason, including health status, and from charging higher premiums based on health status and gender.

Are You Being Treated Fairly?
Legally, your cancer history can’t be used against you in the workplace. But it can be difficult to determine if your cancer history is being used unfairly, because discrimination can be subtle. If someone clearly less qualified is pro­moted, you should suspect the cancer history. If you hear disparaging com­ments, you are being treated unfairly. One woman (who filed a lawsuit) told of the day the office staff had to exit the building during a blackout and her boss said others should just follow her, since her radiation therapy made her glow. If tasks you used to do compe­tently are being given to someone else, that might be a clue your supervisor thinks you’re not as capable. If your assignments or projects are not as chal­lenging or time consuming as they were before your cancer treatment, that might be a clue. But the evidence is very “fact specific” for each workplace situation.

Moving to Another Company
Perhaps you’re unhappy enough to look for another job, you’ve decided to go after your “dream job,” or you just have an opportunity for an interview with another company. Going on a job interview is always challenging, but if you have a cancer history, it might be more so. If you decide to look around for a new job, experts recommend squashing that natural urge some can­cer survivors have to talk about it, at least right away, with a potential new employer. Also, you should know that your potential new employer does not have the right to ask about your medi­cal history. The employer only has a right to know if you are qualified to do the job.

♦ ♦ ♦ ♦ ♦

A Journey Completed

by Alyssa Phillips

My story has a happy ending, but it didn’t exactly start out that way – at all. In order for me to tell you how I got to where I am today and what I learned along the way, I must first tell you where I began.

I had just run my best time in a half marathon a few weeks before I was handed a stage IV cervical cancer diag­nosis. I was a 31-year-old physician assistant and had recently even uttered the words, “I’ve never felt better.” Which is, of course, laughable now in that “either laugh or cry” kind of way. And in staying true to form by never doing anything halfway in my life, it wasn’t just any stage IV cancer diag­nosis I was given. (Although that would have been enough – more than enough.) It was large-cell neuroendo­crine cervical carcinoma, an extremely rare and aggressive type of cancer that elicited a “We don’t know much about it, but it doesn’t look good” response from every member of my stellar medi­cal squadron. But one thing was clear – everything had instantly changed, and life as I knew it would never be the same.

What came next was a dizzying blur of bad news that pushed me to the abso­lute limits of what I could absorb and then beyond: A less than five percent chance of survival, radical hysterectomy, high-dose chemo, two back-to-back bone marrow transplants, almost a year of house isolation, then hope for the best.

I wouldn’t change my life’s path, because that would mean I’d have to give up what I’ve learned.

Admittedly, I realize how “bad” all of that sounds. I won’t sugarcoat it by saying it was easy. It wasn’t. But I will tell you that it was worth it. Even though I never would have chosen the package it arrived in, I wouldn’t change my life’s path, because that would mean I’d have to give up what I’ve learned. Yes, there’s been a lot of reconciling and sorting as I sifted through the fragments of myself, care­fully rearranging them one by one, yet I wouldn’t have it any other way. Be­cause by groping through the dark on this unlit path – sometimes crawling, sometimes sprinting – I somehow found a path to a better version of myself.

I am different in many ways now. I’m less driven by the ways of the world and more focused on reaching out to help others, with a depth of compassion that can only come from knowing suffering first hand. There’s a boldness in me now for the journey I’ve walked, a confidence and a peace in knowing that all is as it should be, which is a far cry from the trembling place where I started. And there is a sense of having come full circle – a jour­ney completed that has profoundly altered me – and a sense that a new chapter has just begun.

How we choose to fight our fight matters.
There is a deep and powerful shift from fighting against something to fighting for something. Once the latter is fully embraced, everything changes. It transforms how we nourish ourselves and the thoughts we choose to hold, and it summons our instinct to turn inward for answers, even as we seek outward help. We then fight for life, choosing to be better for what we’ve overcome while embracing the precious perspective we have gained. So fight your fight by playing fair ... with yourself.

A cancer diagnosis is a call to step into our power, not give it away.
I had fabulous doctors who were vital in my healing journey, but I realized early on that even with the best inten­tions, their job wasn’t to be an expert in everything. Their job was to be an expert in treating the cancer cells. My job was to become an expert in all the “other stuff” and to become an active participant in my care. Above all, we must be kind and gentle with ourselves while also stepping into the gift of our own power.

♦ ♦ ♦ ♦ ♦

Updated Resources for Adolescents and Young Adults with Cancer

 

A diagnosis of cancer in your teens, 20s, or 30s comes at a time when you least expect to be worrying about your health. While it may seem like most cancer programs are aimed either toward young children or toward older adults, there are tons of incredible resources and support services out there with programs just for adolescents and young adults (AYAs).

The following is a partial listing of resources and services that address the unique challenges faced by AYAs with cancer:

Childhood & Young Adult Cancer Resources

♦ ♦ ♦ ♦ ♦

Childhood Cancer Survivors’ Exposure to Chemotherapy or Radiation Does Not Increase Risk of Birth Defects in their Children

 

A large, retrospective study published online in the Journal of Clinical Oncology shows that children of childhood cancer survivors who received prior treatment involving radiation to testes or ovaries and/or chemotherapy with alkylating agents do not have an increased risk for birth defects compared to children of survivors who did not have such cancer treatment. The findings provide reassurance that increased risks of birth defects are unlikely for cancer survivors who are concerned about the potential effects of their treatment on their children, and can help guide family planning choices.

“We hope this study will become part of the arsenal of information used by the physicians of childhood cancer survivors if reproductive worries arise,” says lead author Lisa Signorello, SCD, associate professor of medicine at Vanderbilt University in Nashville, TN, and senior epidemiologist at the International Epidemiology Institute in Rockville, MD.

Study shows that children of childhood cancer survivors who received prior treatment involving radiation to testes or ovaries and/or chemotherapy with alkylating agents do not have an increased risk for birth defects.

“Childhood cancer survivors face real reproductive concerns, including unknowns related to the effects of therapy. But hopefully this study will provide some reassurance that their children are unlikely to be at increased risk for genetic defects stemming from their earlier treatment.”

The study is among the largest to examine birth defects in children of childhood cancer survivors, and among the first to evaluate birth defects using medical records to validate both the children’s health problems and the parents’ radiation and chemotherapy exposures.

♦ ♦ ♦ ♦ ♦

Hill Harper

Actor, Author, and Thyroid Cancer Survivor

by Jessica Webb

Award-winning actor, three-time New York Times best-selling author, and Harvard graduate Hill Harper is no stranger to success. His nonprofit foundation, Manifest Your Destiny, is even centered on success, specifically helping young people create and follow their own paths to succeed. With numerous screen and television gigs under his belt, including his cur­rent role as Dr. Sheldon Hawkes on the CBS crime drama CSI: NY, Hill has a new role to add to his repertoire – cancer survivor.

The Diagnosis
While filming Tyler Perry’s For Colored Girls in Atlanta, GA, Hill woke up one morning unable to swallow. With a sore throat and the intuition that something wasn’t quite right, he visited a doctor friend of his who immediately performed a biopsy. During his visit, Hill spent time laugh­ing with the staff and posing for pictures. When he returned for his results, how­ever, the mood had changed; seriousness had replaced the laughter. Before the doctors even gave him the news, he knew what he was facing. He had thy­roid cancer.

After hearing the word cancer, Hill wanted as much information as he could gather to deal with his diagnosis. His father, grandfather, and uncle had all lost their battles with cancer, Hill shares in a recent interview with Coping® magazine, but he was determined not to meet the same fate. Fortunately, rather than passing off his sore throat as nothing more than a cold, Hill followed his intuition. His cancer was caught early, which Hill cites as a bless­ing, and his doctors believed it was all contained in his thyroid. However, this meant his thyroid would have to be removed.

Rather than passing off his sore throat as nothing more than a cold, Hill followed his intuition.

Surgery and Its Side Effects
Facing a complete thyroidectomy, Hill’s wor­ries turned from the cancer itself to the possible com­plications from surgery. He knew that one tiny slip of the scalpel, damaging the nearby nerves of the vocal chords, could leave him hoarse. Or worse, without a voice. The fu­ture of his acting career hung in the balance.

In July 2010, Hill’s surgeon at Cedars Sinai Medical Center in Los Angeles, CA, successfully removed his thyroid gland, including three cancerous nodes. Though he had trou­ble speaking for a few weeks after surgery, his doctors assured him his voice would return to normal. “It’s a blessing,” Hill says with relief.

Another blessing – because his doc­tors believed that the cancer had not spread to his surrounding glands, Hill was able to forgo radiation therapy.

Although Hill’s voice was ultimately unaffected by his surgery, he was not exempt from some of its other side effects. The complete removal of his thyroid left him with lasting metabolic issues that he manages by taking thy­roid medication, watching what he eats, and staying active. “I’m just trying to exercise as much as I can,” Hill explains.

Hill’s cancer also produced an unexpected side effect – its influence on the direction of his writing. He was in the middle of writing his fourth book – a book on finance – when he received his diagnosis. Drawing on his cancer experience, Hill took the same approach his doctors were using to cure his can­cer and applied it as a method for curing the financial problems many people face. The result was his newest book, The Wealth Cure: Putting Money in Its Place.

Moving Forward
Hill hasn’t let cancer affect his career. Today, he is cancer free and ambitious as always. His goals include acting in more feature films and award-winning tele­vision shows and carrying on his role on CSI: NY, which is currently in its eighth season.

Hill’s message to anyone diagnosed with cancer is simple: “Nothing is set in stone.” He wants those going through treatment to know that, even with a family history of cancer, they too can survive and thrive.

♦ ♦ ♦ ♦ ♦

Most Cancer-related Blood Clots Occur in Outpatients

 

In a study of nearly 18,000 people with cancer, University of Rochester Medical Center researchers have found that when blood clots develop – a well-known and serious complication of cancer treatment – 78 percent of the time they occur when a person is out of the hospital, at home or elsewhere, while on chemotherapy.

This data is striking because, until now, outpatients have not been systematically studied, and previous data gathered on the incidence of blood clots was mostly from those hospitalized, who tend to be sicker. However, with a shift toward outpatient cancer treatment, future efforts to prevent blood clots should focus on helping people to avoid complications so they can continue to live fully, by working, raising children, and exercising, during cancer care, says Alok Khorana, MD, associate professor in the James P. Wilmot Cancer Center at URMC.

Clots form most often in the legs, lungs, or abdomen and are life-threatening if not treated.

“One in five patients develops blood clots after a cancer diagnosis, and we believe that number is rising,” Dr. Khorana says. “The Surgeon General recently issued a Call to Action to reduce venous thromboembolism. At this point, public health efforts have focused on inpatient prophylaxis. These new data suggest that to reduce the burden of VTE in cancer patients, prevention efforts will have to shift to the outpatient arena as well.”

The medical term venous thromboembolism is a mass of red blood cells, clotting proteins, and platelets that block the normal flow of blood. Clots form most often in the legs, lungs, or abdomen and are life-threatening if not treated.

People with cancer are more prone to blood clots for many reasons: the malignancy itself can secrete proteins associated with blood clots; several treatments (including surgery, chemotherapy, and hormonal therapy) raise the clot risk; decreased mobility due to active disease or hospitalization; a genetic predisposition; or having other health problems, such as infections, obesity, anemia, and lung disorders. And once a blood clot occurs, a person with cancer is much more likely to have other clots later.

“Ongoing public health issues that we must address are how to educate patients on the importance of blood clot prevention and improving compliance to preventive treatment,” Dr. Khorana says. People with cancer should immediately report to their physicians any unusual symptoms, such as swelling or redness in limbs or shortness of breath, even if they are otherwise feeling well.

The Rochester group published a risk model in the journal Blood, and based partly on research from the group, the American Society of Clinical Oncology, in 2007, issued its first set of guidelines for clinicians for the prevention of blood clots in people with cancer.

♦ ♦ ♦ ♦ ♦

Working Through Sexual Dysfunction after Prostate Cancer

by Leslie R. Schover, PhD

“Working through” is a good description of a man’s journey with sex after prostate cancer treatment. With patience, a willing partner, and openness to experiment, almost every man can have pleasurable sex. For most men or couples, it takes a few months after surgery, radiation therapy, or hormone therapy to find their new sexual normal.

Accurate “Sexpectations”
I have heard too many men express disappointment about sex after prostate cancer treatment. At least a third of men consider sexual function when choosing a treatment for prostate cancer. As they search for the best option, they are quoted rates from medical articles on recovery of erections. Unfortunately, such articles are often based on unusually young and healthy groups of men who start out with firm, reliable erections. They are treated by the most expert surgeons or with the latest radiation techniques. Even then, reports “fudge” in defining a sexual success. A man is called “potent” if he has ever managed to penetrate a partner sexually since cancer treatment. Success rates would be far lower if only men who usually have firm erections were counted. Men who use pills or injections to get better erections are also included in the “success column.” Yet many of these men are dissatisfied with sex. Even worse, men given unrealistic expectations often feel like a failure if they end up with poor erections.

When it comes to sex after prostate cancer treatment, there is no free lunch. All current treatments leave most men with erectile dysfunction (ED). At least a third of men with prostate cancer already have ED because of aging and risk factors like smoking, being overweight, heavy drinking, heart disease, high blood pressure, and diabetes. For these men, cancer treatment is certainly not going to improve sex.

When it comes to sex after prostate cancer treatment,
there is no free lunch.

For many years, new prostate cancer treatments have promised to avoid ED, including:

• nerve-sparing radical prostatectomy;
• robotic radical prostatectomy;
• brachytherapy (radiation to the prostate with implanted seeds);
• radiation therapy planned by sophisticated computers;
• radiation with proton or photon beams;
• drugs that block testosterone from cancer cells; and
• hormone therapy given until a man’s PSA (prostate-specific antigen) zeroes out and discontinued until PSA rises again.

After each of these treatments became widely used, researchers admitted that most men ended up with ED. The only sex-sparing “treatment” for prostate cancer is active surveillance – waiting to treat the cancer until tests suggest it is becoming dangerous to health.

Taking Action to Rescue Your Sex Life
It does no good to dwell on disappointments. If a man and his partner want to have a more active and enjoyable sex life after prostate cancer, they have many options.

It is important to get regular blood flow into the penis after surgery or radiation therapy to prevent damage to tissue in the penis. Some men take a daily pill to enhance erections (PDE5-inhibitors like Viagra®, Cialis®, or Levitra®). Others inject medication into the penis to produce an erection or use a vacuum erection pump without the constriction band that maintains the erection for intercourse. If you have ED, see a specialist. PDE5-inhibitor pills only work for mild ED after prostate cancer treatment, but penile injections, vacuum pumps, and surgery to implant a penile prosthesis (inflatable erection pump) can restore erections.

Urologists can treat other sexual problems common after treatment such as leaking urine at climax or pain with erection or climax.

Having a partner who enjoys sex is very important. A mental health professional trained in sex therapy can help partners improve sexual communication and change their lovemaking to make the most of an ED treatment. Even men on hormonal therapy may enjoy lovemaking if they get extra mental and physical stimulation.

Advice on sex after prostate cancer can be found in self-help books or websites. Support groups or peer counseling programs offer suggestions from men who have been through the process.

♦ ♦ ♦ ♦ ♦

Tips for Preventing Infections during Chemotherapy

 

People with cancer who are treated with chemotherapy are more likely to get infections through everyday activities with their family and friends or from healthcare settings. One out of every 10 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 does the body normally fight infections?
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.

How can I prevent infections during chemotherapy? Prepare, prevent, and protect.
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 doctor’s 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.

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; and
• 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; or
• 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 seven 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.

♦ ♦ ♦ ♦ ♦

The Importance of Hope

by Lois M. Ramondetta, MD

Although there are many definitions of hope, my perception of hope involves a dynamic response to the rough waves on the sea of life. It is the expectation that good will come despite challenging circumstances. Although some have described hope as a passive process, it is most certainly an active internal process requiring motivational energy. That said, one’s ability to foster hope is, without question, deeply affected by the external state of affairs and by other individuals.

While for some people hope is intimately intertwined with one’s religious affiliation, for others the basis of hope is a strong personal spiritual philosophy. According to Dr. Kaye A. Herth, discovering hope in the midst of difficult situations requires four steps: appraisal of the situation, reflection, reframing to develop new goals, and viewing the situation in a relational context.

Hope is important for individuals with expectation of cure, as well as for those with limited time. Hope correlates with positive coping, resilience, better pain tolerance, better quality of life, and higher self-esteem. Hope requires reinforcement and is partially dependent on the presence of quality relationships and strong social networks. Importantly, hope can be influenced by the perception of control over illness and can mediate the relationship between one’s system of belief and fighting spirit. Alternatively, lack of hope has been correlated with increased distress, psychological pain, deterioration of physical status, fear, loss of control, and can even be an obstacle to effective interventions.

Caregivers, including physicians, nurses, and family and friends, can inspire, enable, enhance, and foster hope at every stage of illness.

So what do people with cancer hope for? Although cure seems the most obvious answer, most people express a desire for a meaningful life, inner peace, and sustained life quality. Of course, many hope that they will be an exception to the statistics and may hope that their diagnosis was a terrible mistake. But often, all that is realistically hoped for is the continuation of “normal” interpersonal activities – time with family, friends, and a chance to go to reunions, on vacations, and to attend religious services. People may simply hope that nausea will be controlled, the neuropathy will fade, and perhaps, the tumor marker level will decrease. Ultimately, I believe we all hope for peace of mind.

In an ongoing study at our center, we are evaluating changes in hope, center of control, and spirituality in people newly diagnosed with ovarian cancer over time. Results from the study reveal that hope is associated with feelings of well-being, decreased symptom burden, and less anxiety. Interestingly, religiosity did not correlate with anxiety, depression, or quality of life. Although directionality is unclear at this first time point, it is clear that increased hope and, to a lesser extent, spirituality are associated with better quality of life and decreased symptom burden.

So, how does one become more hopeful? The endeavor does not fall solely on the individual with cancer, nor does it fall only on the caregiver. It is a shared effort requiring not only personal investment, but also effort from all those interacting with the survivor. Acquiring hope requires gleaning information to perform a realistic assessment of the threat which then allows one to overcome fear and uncertainty. After the threat is defined, a person should consider alternatives and, if necessary, shift expectations. Lastly, they may need to “prepare for the worst and hope for the best.” In addition to a situational assessment, a personal resource assessment should be undertaken. Supportive relationships should be fostered, and detrimental relationships should be limited or terminated. As my friend Dr. Deborah Sills said, “Some people are better at cancer than others.” In our book, The Light Within, she discusses how it is necessary to have some BC (before cancer) friends and AC (after cancer) friends.

Hope correlates with positive coping, resilience, better pain tolerance, better quality of life, and higher self-esteem.

I believe communication between an individual and his or her physician is one of the most important factors in defining hope. It is so important that the physician be skilled at providing just the information the individual wants and not “full explicit disclosure” before the appropriate time. Maintaining this delicate balance is difficult. The goal is to foster realistic hopefulness by providing truthful information and emphasizing only effective therapeutic options. A physician can also share personal views regarding what might give a person’s life meaning. It is also important to note that for some individuals, hope in one’s caregiver or faith in one’s God is all the “information” and “control” one needs.

For me, hope is interwoven with what gives meaning to my life and my sense of spirituality. Few express this idea better than Viktor Frankl in his book Man’s Search for Meaning. He describes finding meaning through creating a work or doing a deed, experiencing something, such as truth, goodness, beauty, love, and most importantly, by the attitude we take toward unavoidable suffering. Cancer survivors and caregivers can help preserve and build hope through engaging in interventions including meaning-based group therapy, dignity therapy, and life review, and possibly, something as simple as a daily gratitude diary.

Promoting hope does not mean keeping patients up-beat or from ever experiencing sadness. Bad news should not be hidden. Instead, the goal is to inform and then help the person reflect and reframe goals in order to reach a new way of living where the individual can again hope for an improved future. Caregivers, including physicians, nurses, and family and friends, can inspire, enable, enhance, and foster hope at every stage of illness. The best way to start helping is to ask a person, “Do you have hope?” “What do you hope for?” and to genuinely listen to their response. Really all any of us can hope to know is this: “Everything will be ok in the end, and if it isn’t ok, then [we hope] it isn’t the end.”

♦ ♦ ♦ ♦ ♦

Redefining ‘Survivor’

by Nicole Malato

There are different definitions of “survivor.” Until recently, I had always thought it was someone who “beat cancer” and went on to remission for many years. Now I am learning that using that definition minimizes the experiences of other survivors and prevents those who have earned the title from rightfully using it. I am embracing the fact that I am indeed a survivor already. I have overcome the following obstacles to earn this honorable distinction:

♦ I survived calling my doctor and saying, “I found a lump.”

♦ I survived three mammograms, infinite ultrasounds, and four biopsies in a three hour period.

♦ I survived the shock of hearing the words “you have cancer.”

♦ I survived telling my family about my diagnosis, knowing I was ripping out their hearts in the process.

♦ I survived the battery of tests to determine what type of breast cancer I had and where it was.

♦ I survived waiting for the results, which was infinitely more grueling than the actual tests.

♦ I survived multiple medical consultations and feeling like the world had now seen my upper body, which was difficult for someone who was modest.

♦ I survived making the toughest decision I have ever had to make – what surgery to have and what treatment course to follow.

♦ I survived a double mastectomy with tissue expanders, and I healed well.

♦ I survived having surgical drains in for two weeks.

♦ I survived my first expansion and my port insertion.

♦ I survived wig shopping and finding a dress for a wedding that looks great and covers my port.

♦ I survived my first round of chemo, and I’m in the process of recovering for round two.

I still have many trials to go through, but I will do so with my head held high. There is no other way. I am proud of my accomplishments and know I will continue to shine. I will keep on surviving.

♦ ♦ ♦ ♦ ♦

Nicole Malato is a breast cancer survivor and a 34-year-old mom living in Toms River, NJ.

This article was originally published in Coping® with Cancer magazine, January/February 2012.

Helping Children Cope with Your Breast Cancer

by Cynthia Moore, PhD

Open, honest communication with children about breast cancer can be challenging, but it’s one of the best ways to help children thrive during your treatment.

What should I tell my children about my diagnosis?
It helps for children to know the name of the illness (“breast cancer”) and that it is not contagious. (“You can’t catch cancer, like you can’t catch a broken leg.”) You might ask if your child has thoughts about how the cancer started, because sometimes children have incorrect ideas. For example, a four-year-old child might imagine that hitting mom during a tickle fight caused the lump in her breast. Even older children can mistakenly think that they did something to cause a parent’s cancer. A sixth grader might think that his mother’s stress about his poor grades in school caused her cancer. Children need to know that nothing they did, or didn’t do, caused your cancer.

Do I have to use the word “cancer”?
You might wonder if saying that you have a “boo-boo” on your breast or that you are “sick” will be less scary for your child than using the words “breast cancer.” Usually, it’s better to be specific. Children get scrapes all the time and might have a hard time understanding why their boo-boo can be fixed with a bandage but yours needs surgery. Also, children often overhear things, even when you try hard not to talk in front of them. This can be confusing to a young child, and an older child might feel hurt or angry that you did not tell him or her about the diagnosis yourself. Honest conversations help your children learn how to talk about difficult things and share their worries with you.

Let your child know that it is normal to have many different feelings about cancer.

What else should my children know?
Let your children know what kind of treatment you are getting and how it might affect their daily lives. For example, you might tell your fifth grader that “I’ll be going to the doctor’s office every two weeks for medicine to fight the cancer; it’s called chemotherapy. On those days, I won’t be able to pick you up from school, so Jason’s mom will bring you to his house until I get home.” If you expect side effects from treatment, prepare your children for these, too: “I will probably be really tired for a few days after my chemotherapy, so I might not be able to play with you or help you with homework on those days. We’ll see how it goes and ask our friends for help if we need it.”

What if my child doesn’t want to talk?
Some children ask a lot of questions, while others would sooner give up candy forever than hear one more word about cancer or admit to having any feelings about your diagnosis. If your child prefers not to talk much but maintains normal school performance, enjoys regular activities and friends, and behaves as usual at home, then he or she is probably coping well. Some children do best when they try not to think much about cancer and focus instead on “normal life.”

Rather than asking your “clam” how he or she feels about you being sick, try asking whether he or she is hearing too much, not enough, or just the right amount of detail about your illness and treatment. Ask about whether there are any good things about living with your cancer, such as having brownies delivered several times a week by neighbors or being spoiled a bit by grandparents. Then ask what the worst parts are – you looking different from other parents, not being able to have friends over very often, or disgusting casseroles too many nights in a row? You might also ask how he or she thinks other family members are coping.

Let your child know that it is normal to have many different feelings about cancer. Ask if there is another adult he or she might like to talk with, such as a friend’s parent, a teacher, or a family member. Changes in your child’s behavior at home, school, or with friends that last longer than a few weeks can be a sign that he or she needs some help managing his or her feelings. Ask your child’s pediatrician or school guidance counselor about people in your community who can help you to help your child.

♦ ♦ ♦ ♦ ♦

Dr. Cynthia Moore is a psychologist with the Marjorie Korff Parenting at a Challenging Time (PACT) program at Massachusetts General Hospital. She guides parents at all stages of cancer survivorship to help their children thrive.

For more ideas about talking with children, visit Massachusetts General Hospital’s Parenting at a Challenging Time program’s website at mghpact.org.

This article was originally published in Coping® with Cancer magazine, January/February 2012.

Tips to Better Cope with Cancer Treatment

by Susan Bauer-Wu, PhD, RN

1 Tune in to your body.
You may wonder why you would want to be more aware of your body at a time when you’re not feeling well. But tuning in is an entry into accepting your body as it is right now. By tuning in, you may recognize that what you’re feeling may not be significantly different from how you felt hours, days, or even weeks before, so you may be less likely to panic when you feel discomfort.

2 Befriend your body.
You may feel that your body has betrayed you. But befriending your body doesn’t mean that you have to like what is happening to it. It means that you are kind and gentle toward your body, and you are open to joining, being with, and accepting your body with all its frailties and imperfections.

3 Be aware of sensations as just sensations.
Being aware of sensations as just sensations involves becoming a curious and detached observer. If you step back and observe what your body is feeling, you realize that pain is not just one big overwhelming “thing,” but rather a constellation of many subtle bodily sensations, such as dullness, sharpness, aching, or throbbing, that likely change from moment to moment. Noticing their nuanced qualities and fluctuations gives them less power over you.

4 You are not your pain.
Sometimes it is hard to separate yourself from pain and other discomforts you may experience. The sensations and associated stories consume you, and you lose perspective. With practice, you can begin to realize that you are not the pain (or any other discomfort) or just a patient or a disease; there is much more that makes you who you are.

5 Turn toward discomfort.
The notion of turning toward discomfort seems counter-intuitive. A natural reaction is to resist it, push it away, or run away from it. While distracting yourself from unpleasantness may seem helpful in the short run, it doesn’t allow you to actually learn how to live with what is happening. When you turn toward and pay attention to the discomfort, it loses power over you.

♦ ♦ ♦ ♦ ♦

Dr. Susan Bauer-Wu is a researcher, educator, clinician, and author.

Adapted with permission by New Harbinger Publications, Inc. from Leaves Falling Gently by Dr. Susan Bauer-Wu, newharbinger.com.

This article was originally published in Coping® with Cancer magazine, January/February 2012.

The Role of Active Surveillance in Managing Localized Prostate Cancer

 

An independent panel convened recently by the National Institutes of Health has concluded that many men with localized, low-risk prostate cancer should be closely monitored, permitting treatment to be delayed until warranted by disease progression. However, monitoring strategies – such as active surveillance – have not been uniformly studied, and available data do not yet point to clear follow-up protocols. The panel recommended standardizing definitions and conducting additional studies to clarify which monitoring strategies are most likely to optimize people’s outcomes.

“It’s clear that many men would benefit from delaying treatment, but there is no consensus on what constitutes observational strategies and what criteria should be used to determine when treatment might ultimately be needed among closely-monitored men,” says Dr. Patricia A. Ganz, conference panel chairperson and director of the Division of Cancer Prevention and Control Research at the Jonsson Comprehensive Cancer Center at the University of California in Los Angeles.

Identifying appropriate management strategies for different subgroups of people is critical to improving survival.

More than half of prostate cancers are localized (confined to the prostate), not aggressive at diagnosis, and unlikely to become life-threatening. However, approximately 90 percent of men receive immediate treatment, such as surgery or radiation therapy. For many of these men, treatment has substantial short- and long-term side effects, such as diminished sexual function and loss of urinary control, without clear benefits, such as improved survival. Identifying appropriate management strategies for different subgroups of people is critical to improving survival and reducing the burden of adverse effects.

Currently, clinicians often describe two alternatives to immediate treatment of low-risk prostate cancer: observation with and without the intent to cure. Observation without intent to cure, sometimes referred to as watchful waiting, is a passive approach, with treatment provided to alleviate symptoms if they develop. Observation with intent to cure, often referred to as active surveillance, involves proactive follow-up in which blood samples, digital rectal exams, and repeat prostate biopsies are conducted on a regular schedule, and curative treatment is initiated if the cancer progresses.

The panel identified emerging consensus in the medical community on a definition for low-risk prostate cancer: a prostate-specific antigen (PSA) level less than 10 ng/mL and a Gleason score of 6 or less. Using this definition, the panel estimated that more than 100,000 men diagnosed with prostate cancer each year would be candidates for active monitoring rather than immediate treatment. Importantly, however, the panel found that protocols to manage active monitoring still vary widely, hampering the evaluation and comparison of research findings.

“Prostate cancer affects some 30 to 40 percent of men over the age of 50. Some of these men will benefit from immediate treatment, others will benefit from observation. We need to standardize definitions, group patients by their risks, and conduct additional research to determine the best protocols for managing low-risk disease,” states Dr. Ganz.

The panel further recommended that disease terminology should be refined as a result of changes in the population of people with prostate cancer due to prostate-specific antigen (PSA) testing. Because of the very favorable prognosis of PSA-detected, low-risk prostate cancer, the panel recommended that strong consideration be given to removing the anxiety-provoking term “cancer” for this condition.

♦ ♦ ♦ ♦ ♦

For more information, visit consensus.nih.gov/2011/prostate.htm.

Source: National Institutes of Health, nih.gov

This article was originally published in Coping® with Cancer magazine, January/February 2012.

American Cancer Society Nutrition Guidelines Stress Need for Supportive Environment

 

Updated guidelines on nutrition and physical activity for cancer prevention from the American Cancer Society stress the importance of creating social and physical environments that support healthy behaviors. The report includes updated recommendations for individual choices regarding diet and physical activity patterns, but emphasizes that those choices occur within a community context that can either help or hinder healthy behaviors.

The updated guidelines include recommendations for community action to accompany the four major recommendations for individual choices to reduce cancer risk, saying a supportive social and physical environment is indispensable if all Americans are to have genuine opportunities to choose and maintain healthy behaviors.The American Cancer Society publishes its Guidelines on Nutrition and Physical Activity for Cancer Prevention to serve as a foundation for its communication, policy, and community strategies and, ultimately, to affect dietary and physical activity patterns among Americans. The guidelines, published about every five years, are developed by a national panel of experts in cancer research, prevention, epidemiology, public health, and policy, and reflect the most current scientific evidence related to dietary and activity patterns and cancer risk. They were last updated in 2006.

If we’re not working to change our environment so that the healthier choice is the easier choice, we’re missing the boat.

The guidelines include four major recommendations, each of which includes several supporting recommendations.

Achieve and maintain a healthy weight throughout life

• Be as lean as possible throughout life without being underweight. Avoid excess weight gain at all ages. For those who are currently overweight or obese, losing even a small amount of weight has health benefits and is a good place to start.
• Engage in regular physical activity and limit consumption of high-calorie foods and beverages as key strategies for maintaining a healthy weight.

Adopt a physically active lifestyle.

• Adults should engage in at least 150 minutes of moderate intensity or 75 minutes of vigorous intensity activity each week, or an equivalent combination, preferably spread throughout the week.
• Children and adolescents should engage in at least 1 hour of moderate or vigorous intensity activity each day, with vigorous intensity activity occurring at least 3 days each week.
• Limit sedentary behavior such as sitting, lying down and watching television, and other forms of screen-based entertainment.
• Doing some physical activity above usual activities, no matter what one’s level of activity, can have many health benefits.

Consume a healthy diet, with an emphasis on plant foods.

• Choose foods and beverages in amounts that help achieve and maintain a healthy weight.
• Limit consumption of processed meat and red meat.
• Eat at least 2.5 cups of vegetables and fruits each day.
• Choose whole grains instead of refined grain products.

If you drink alcoholic beverages, limit consumption.

• Drink no more than 1 drink per day for women or 2 per day for men.

The authors of the report say the tobacco control experience showed that policy and environmental changes at national, state and local levels are critical to achieving changes in individual behavior. They say similar purposeful changes in public policy and in the community environment are required to help individuals maintain a healthy body weight and remain physically active throughout life. In that vein, the Guidelines also include recommendations for community action:

Public, private, and community organizations should work collaboratively at national, state, and local levels to implement policy and environmental changes that:

• Increase access to affordable, healthy foods in communities, worksites, and schools, and decrease access to and marketing of foods and beverages of low nutritional value, particularly to youth.
• Provide safe, enjoyable, and accessible environments for physical activity in schools and worksites, and for transportation and recreation in communities.

“Our guidelines have always stressed what people can do themselves to lower their risk of cancer, and that’s important,” said Colleen Doyle, MS, RD, director of nutrition and physical activity, and co-author of the report. “But we must also take public action to make those behaviors easier for all Americans. We can’t just tell people to eat more fruits and vegetables and get more exercise when there are so many forces working against them being able to do that easily, and on a regular basis.

“We’ve got to work together to ensure that worksites and schools have healthy food options; that our neighborhoods are designed so that our children can safely ride their bikes or walk to school; that people have the information they need to help them make healthier food choices, whether at the grocery store or when eating out.

“The environments in which we live, work, learn and play have a tremendous impact on our ability to make and sustain healthy lifestyle choices. So if we’re not working to change those environments so that the healthier choice is the easier choice, we’re missing the boat.”

The report also reviews the evidence on diet and physical activity factors that affect risks for select cancers, as well as a section on common questions about diet, physical activity and cancer; from coffee and dietary supplements to garlic, fiber, and irradiated foods.

♦ ♦ ♦ ♦ ♦

The full report can be viewed at: http://onlinelibrary.wiley.com/doi/10.3322/caac.20140/full

Source: American Cancer Society, www.cancer.org

Fifth Lilly Oncology On Canvas Art Competition Invites All Touched by Cancer to Share Their Cancer Journeys

Competition Expands to Canada

 

Get your canvases, paintbrushes and cameras ready — the subject is cancer and you are the storyteller. Lilly Oncology and the National Coalition for Cancer Survivorship (NCCS) today announced the launch of the 2012 Lilly Oncology On Canvas: Expressions of a Cancer Journey Art Competition and Exhibition. The biennial competition invites individuals from the United States, Puerto Rico and Canada, who were diagnosed with any type of cancer — as well as their families, friends, caregivers and healthcare providers — to express, through art and narrative, the life-affirming changes that give their cancer journeys meaning. Entries must be postmarked by June 29, 2012.

Oncology On Canvas^SM was launched in 2004 by Lilly Oncology to help those affected by cancer cope with the emotional side of the disease. Winners’ prizes consist of donations made to the cancer charities of their choice. Following the competition, much of the artwork embarks on a tour of cancer centers, hospitals and patient advocacy group events.



2011 Oncology On Canvas second place winner

Since its inception, Lilly Oncology On Canvas has received more than 3,600 entries. However, these 3,600 stories are but a few of the many waiting to be told by the nearly 12 million cancer survivors alive today in the U.S. alone — in addition to millions of others who love and care for them, according to Newt Crenshaw, vice president, Lilly Oncology.

“If you or someone you care for has heard the three words, ‘You have cancer,’ then you know firsthand that a cancer diagnosis can change the lives of patients and everyone around them,” said Crenshaw. “Lilly Oncology On Canvas has become an important way for cancer patients, oncologists, oncology nurses and so many others to share their stories of hope and despair, loss and survival, and countless other emotions.”

“We are whole people, comprised of biological, spiritual, emotional and psychological parts,” said Richard Payne, MD, NCCS Chair, and an internationally known expert in the areas of pain relief, care for those near death, oncology and neurology. “Oncology On Canvas recognizes this fact by providing anyone affected by cancer with a platform to express often unspoken emotions, resulting in artwork that moves and inspires.”

Call for Entries Details
The 2012 Lilly Oncology On Canvas competition is open to residents of the United States and Puerto Rico. There are three entrant categories: person diagnosed with cancer; family member, friend or caregiver; and healthcare professional. Original artwork that depicts one’s cancer journey may be submitted in one of six media: watercolor, oil, pastel, photography, acrylic or mixed media. The artwork must be accompanied by a narrative. 

Winners in 24 categories will be chosen by an independent panel of judges. Prizes consist of donations to cancer-related charities selected by the winners, ranging from $1,000 to $10,000. Following the competition, much of the artwork will embark on a tour of cancer centers, hospitals and patient advocacy group events. 

♦ ♦ ♦ ♦ ♦

For further information about Lilly Oncology On Canvas, including official rules, entry forms and a gallery of previous entries that will inspire you, visit www.LillyOncologyOnCanvas.com or call 1-866-991-LOOC (5662).

You can follow Lilly Oncology On Canvas on Twitter (twitter.com/LlyOncOnCanvas), Facebook (www.facebook.com/LillyOncologyOnCanvas) and YouTube (www.youtube.com/LlyOncOnCanvas).

To learn more about cancer survivorship tools and resources, visit the National Coalition for Cancer Survivorship (NCCS) website at www.canceradvocacy.org.

Overcoming the Emotional Challenges of Cancer

by Dawn Speckhart, PhD

Recently, my best friend, Greg, was diagnosed with testicular cancer. Like most people, he wanted to minimize how stressful this would be on him and his family. At first, simply acknowledging the significance of his diagnosis was difficult. Thankfully, his cancer was caught early and his prognosis is good. However, he needed to undergo surgery and chemotherapy. I can remember the first time he said, “I guess this is a big deal.” After spending so much time trying to minimize the significance of being diagnosed with cancer, he finally allowed himself to accept that it was true and that he did have some concerns.

Many different emotions arise after someone is diagnosed with cancer. Like most people with cancer, Greg wanted to continue with life as if nothing was wrong. He was willing to complete necessary treatments, but minimized everything. Most people want to play down the impact of their cancer diagnosis so that they don’t worry their family and friends. In truth, this strategy is an attempt to deny that they are worried themselves. What this strategy really does is leave the person with cancer to worry alone.

The most common cause of anxiety relates to potential side effects from treatment. Greg needed chemotherapy. He claimed he wasn’t worried. Greg felt confident he was in great shape and could withstand the side effects of chemotherapy because he finished an Ironman triathlon prior to his diagnosis. He also planned to work during his chemotherapy. Of course, no one knew for sure how sick or fatigued the chemotherapy would make him feel.

No one chooses to get cancer and nothing can really prepare you for exactly what will happen along your cancer survivorship journey.

Greg was shocked to discover that he felt awful from chemotherapy and was unable to do anything for several days. The point is not that everyone will have a hard time with chemotherapy treatments, but rather that everyone’s body reacts differently. Therefore, it is helpful to be emotionally prepared for the process.

Education
Get educated on treatment side effects from your oncologist. Usually, your imagination is worse than reality. Think positive. If you wake up feeling good, enjoy your day. If you wake up with symptoms, you and your medical team will deal with them.

Plan Ahead
Cancer treatments may affect your daily life which can be frustrating. People don’t want their lives disrupted by cancer, even temporarily. Be prepared for potential side effects. Set up a plan for others to help when you know your treatment is due. This will minimize stress and give you some control as you manage your disease and your life at the same time. Asking for help is a difficult transition for most people, but it helps prevent feeling overwhelmed when undergoing cancer treatment.

Depression
“Why me?” “What else can go wrong?” “How long do I have to worry about my cancer coming back?” These are all real concerns. Here are some tips to help you fight depression:

♦ Find someone you can confide in. If you don’t have someone you feel comfortable talking to, write in a journal or contact a mental health professional.

♦ Exercise is a natural way of fighting depression. Get up and get moving – even if you don’t feel like it.

♦ Wake up with a purpose. What are you going to do today? Before cancer, what did you do? What did you enjoy? Plan activities that are appropriate for you at this time.

♦ Stop negative self-talk. When you find yourself engaging in negative self-talk – stop. Change what you are saying to yourself. For example, instead of thinking, “I am afraid of getting sick again with my next cycle of chemo,” start repeating, “After this round of chemo, I am all done with my treatment,” or “After chemo, I am going to…” It’s important to stop the negative thought process and find more positive ways to think about your situation.

No one chooses to get cancer and nothing can really prepare you for exactly what will happen along your cancer survivorship journey. However, the strategies listed above, combined with maintaining a positive outlook, will help you with the emotions related to a cancer diagnosis.

Greg was able to get through his chemotherapy, realizing each cycle was bringing him one step closer to finishing his fight with cancer. He kept himself distracted with work, family, and future events. He remained as active as possible throughout his treatment, planning for another triathlon. This summer, 18 months after his diagnosis, Greg will participate in his fifth Ironman race. I can’t wait to see him cross the finish line.

♦ ♦ ♦ ♦ ♦

Dr. Dawn Speckhart is the psychologist at the Blood and Marrow Transplant Program at Northside Hospital in Atlanta, GA.

This article was originally published in Coping® with Cancer magazine, January/February 2012.

Maybe…

by Charlie Altersitz

 

If we pretend long enough,
Maybe it’ll just go away
Maybe we can wake up tomorrow morning
And laugh without the awkward tension
Maybe our jokes won’t come off the tongue
With nervous apprehension
Does it hurt to laugh?
Maybe I won’t say anything at all.

If we close our eyes,
Maybe the elephant in the room
Will get chased off by a mouse,
Or maybe it will choose to
Occupy someone else’s home.
We can clean up where it stayed
And go on with our lives,
Like it was a short-lived resident
In our guest bedroom.
No different.

Maybe we’re all looking at it the wrong way.
Maybe the “c” word we should be looking for
Is courage,
And we should do our best to wear it
On our sleeves, shirts, and hats
Like a baseball uniform of support.
And instead of wishing our elephant away,
We can stand up to the animal
And kindly ask it to move on.

♦ ♦ ♦ ♦ ♦

Charlie Altersitz wrote “Maybe…” after his stepfather was diagnosed with testicular cancer. He resides in Philadelphia, PA.

This article was originally published in Coping® with Cancer magazine, January/February 2012.

American Society of Clinical Oncology’s Annual Report on Progress Against Cancer

 

The American Society of Clinical Oncology (ASCO) has released Clinical Cancer Advances 2011: ASCO’s Annual Report on Progress Against Cancer, an independent review of the advances in cancer research that have had the greatest impact on patient care in 2011. The report also identifies the most promising trends in oncology and provides insights from experts on where the future of cancer care is heading.

“We’ve made significant strides in clinical cancer research over the past year and this report adds renewed hope for patients,” says Nicholas J. Vogelzang, MD, co-executive editor of the report. “More personalized treatment approaches and advances in early detection are helping patients live longer, healthier lives. But we must improve the nation’s clinical research system and expand access to quality cancer care to accelerate the pace of progress.”

2011’s top research advances demonstrate new therapies for reducing cancer recurrence, progress made against hard-to-treat cancers, and improvements in cancer prevention and screening. The report also highlights several new drug approvals that bring smarter, more effective therapies to specific genetic subgroups of people with cancer. The following have been selected as the top advances:

♦ A Phase III study found that vemurafenib (Zelboraf®), which targets a common mutation in melanoma in a gene called BRAF, improved overall survival in people with advanced melanoma when compared to standard chemotherapy.

♦ A large national screening trial of more than 50,000 current and former heavy smokers found three annual low-dose computed tomography (CT) scans reduced the death rate from lung cancer by 20 percent compared to those who were screened with three annual chest x-rays.

♦ FDA approved therapies for two hard-to- treat cancers. Crizotinib (Xalkori®) was approved for people with advanced non-small-cell lung cancer who harbor a specific type of alteration in the anaplastic lymphoma kinase (ALK) gene based on the results from two Phase II studies. One study demonstrated that 50 percent of people experienced complete or partial tumor shrinkage for a median of 10 months and a second study found a 61 percent objective response rate lasting a median of 12 months. Ipilimumab (Yervoy™) – an immune therapy that activates the immune system’s T cells – was approved for people with previously untreated metastatic melanoma based on the results of a Phase III trial showing that the drug, combined with the standard chemotherapy drug dacarbazine, improved overall survival by two months.

♦ The first conclusive evidence that an aromatase inhibitor reduced the risk of a first breast cancer was found, making exemestane (Aromasin) a preventative treatment option for postmenopausal women who are at high risk for the disease.

Selected by an 18-person editorial board of prominent oncologists, the report highlights 54 advances in clinical oncology over the past year and covers the full scope of patient care, including cancer disparities, advanced cancer care, and survivor care. Clinical Cancer Advances 2011 also features a “Year in Review” section, which describes key cancer policy developments and ASCO policy initiatives from the past year that are likely to influence cancer care over the coming years. Some of the important topics covered in this section include:

• ASCO’s recommendations for revitalizing U.S. clinical cancer research for the molecular era, captured in the new report, Accelerating Progress Against Cancer: ASCO’s Blueprint for Transforming Clinical and Translational Cancer Research;
• efforts to address the growing problem of oncology drug shortages; and
• the potential impact of healthcare reform in addressing cancer disparities.

♦ ♦ ♦ ♦ ♦

To download a full copy of the Clinical Cancer Advances 2011 report, visit cancer.net.

Source: American Society of Clinical Oncology, cancer.net

This article was originally published in Coping® with Cancer magazine, January/February 2012.

National Cancer Comprehensive Network Publishes New Treatment Guidelines for Prostate Cancer

 

The new NCCN Guidelines for Patients™ for Prostate Cancer provide a framework on which to base treatment decisions. Prostate cancer is a complex disease, with many controversial aspects of management and with a lack of sound data to support treatment recommendations. Several variables (including life expectancy, disease characteristics, predicted outcomes, and patient preferences) must be considered by the person with cancer and physician in tailoring prostate cancer therapy to the individual.

These Patient Guidelines aim to provide information that will help people talk to their doctors about treatment for prostate cancer. In particular, the guidelines give treatment recommendations based on the characteristics of the cancer, possible side effects of treatments, and a side-by-side comparison of the main benefits and disadvantages of the treatments for prostate cancer.

♦ ♦ ♦ ♦ ♦

The NCCN Guidelines for Patients™ for Prostate Cancer can be found at NCCN.org, the website for clinicians, or at NCCN.com, the website for people with cancer, or directly at NCCN.com/files/cancer-guidelines/prostate/index.html. The NCCN Guidelines for Patients™ for Prostate Cancer are also available in print booklet format, which can be obtained free of charge.

Source: National Cancer Comprehensive Network, NCCN.com

This article was originally published in Coping® with Cancer magazine, January/February 2012.

Yoga May Help with Fatigue-related Symptoms in Breast Cancer Survivors

 

A common side effect of cancer treatment is fatigue: approximately one-third of cancer patients experience persistent fatigue. According to a new research study, funded by the National Center for Complementary and Alternative Medicine (NCCAM) at the U.S. National Institutes of Health (Project Number: U01-AT003682), yoga may help breast cancer survivors deal with fatigue.

This study compared the effects of two different interventions on cancer-related fatigue in a small number of breast cancer survivors. In this experiment, breast cancer survivors were randomized to receive an Iyengar yoga or heath education intervention for 12 weeks. Iyengar yoga is a traditional form of Hatha yoga and uses different poses and breathing techniques for various medical conditions. The health education classes consisted of lectures on topics of interest to breast cancer survivors (such as psychosocial issues in cancer survivorship) and discussions. All study participants completed fatigue-related questionnaires before starting their intervention, immediately after their intervention, and 3 months following their intervention.

The participants who had completed the yoga intervention were significantly more confident in their ability to manage fatigue.

At the start of the study, participants from both groups believed that their intervention would help improve fatigue symptoms. The participants in the yoga group reported significant decreases in fatigue severity and increases in vigor from the start of the intervention to the 3-month follow up compared to participants in the health education group. In addition, the participants who had completed the yoga intervention were significantly more confident in their ability to manage fatigue than were participants in the health education group. Although participants from both groups reported a decline in depressive symptoms during the course of the study, larger reductions were reported by subjects in the yoga group. These findings suggest that a specialized yoga intervention may help improve persistent fatigue symptoms in breast cancer survivors.

♦ ♦ ♦ ♦ ♦

Source: U.S. National Institutes of Health, National Center for Complementary and Alternative Medicine, www.cancer.gov/cam

Can’t Work? Where to Turn for Help

by Dennis Liotta, Esq

Figure skating champion and cancer survivor Scott Hamilton once said, “You are going to go through a lot of stuff in your life, and you can look at it as debilitating, or you can look at it as a challenge.”

Dealing with cancer arguably will be one of the hardest things you do in your life. Chemotherapy, radiation, surgery, and other treatments fight the cancer in your body, but they may also leave you with side effects that may leave you unable to work for an extended period of time. And if you can’t work, it can be very hard on you and your family financially – especially with the cost of medical treatments, procedures, and hospital stays.

If your expenses are piling up and you’re having trouble making ends meet, it’s time to consider applying for Social Security disability (SSD) benefits. Due to the troubled economy and high unemployment rate, the Social Security Administration is being flooded with claims. Learning how to navigate the system will increase your chances of being accepted for SSD benefits.

How to Determine Whether You’re Eligible for Benefits
If you can answer yes to the following questions, you may be eligible for SSD benefits:

• Do you have a physical or mental condition that prevents you from working full time? The diagnosis does not guarantee you benefits; it is whether the disability is severe enough to prevent you from holding a job.
• Do you have a disability that prohibits you from working in any capacity – not just in the job you held previously?
• Has your disability lasted – or is expected to last – for at least one year? Or, is the disability life-threatening?
• Do you have an earnings record that shows you have paid into the Social Security system within the past five years? If you have never held a job, you may be eligible for Supplemental Security Income benefits (SSI).

Getting the SSD benefits you need to live while coping with cancer can be a challenge, but it’s a challenge that can be overcome with knowledge, preparation, patience, and persistence.

How to Apply
To get started, contact the Social Security Administration (SSA) at 1-800-772-1213, visit ssa.gov to file online, or make an appointment at a local Social Security District Office.

The claims process can take 120 days or more. Those approved receive SSD benefits after their fifth full month of disability. If approved, your SSD payments are retroactive from the date you were evaluated as disabled. Money you receive is based on your average top earnings over the past 15 years of your work history. However, note that your SSD medical benefits do not kick in until the 29th month from the date you’re considered disabled.

Denied Claims – What to Do
If the SSA denies your claim, don’t panic. The government denies over three-fourths of initial claims, even for people who are entitled to receive SSD benefits. But you must act quickly. You only have 60 days to appeal. You can reapply after that time period, but the process starts all over again.

If you appeal the decision, you’ll go to a hearing, which can take anywhere from 12 to 18 months. Typically, it takes a judge several months to issue a decision. If that doesn’t work, you can move on to the Appeals Council. Lastly, you can pursue a case in Federal Court.

While you can represent yourself at an appeal hearing, you may want to consider contacting an experienced attorney if you get overwhelmed. You will definitely need an attorney at the federal level.

Sometimes the SSA will terminate your benefits if they believe you’ve earned too much money or your condition has improved. However, if your benefits are stopped, you can appeal within 60 days (10 days to continue receiving checks while the appeal is pending).

Navigating the System
Applying for SSD benefits can be a long and complicated process. If you are living with cancer and can’t work, increase your chances of being approved by learning all you can about the Social Security system.

If you want to hire an attorney to help you cut through the red tape, make sure the lawyer has experience handling SSD claims, a track record of success, and preferably a contingent fee policy so that you don’t pay unless you receive benefits.

Getting the SSD benefits you need to live while coping with cancer can be a challenge, but it’s a challenge that can be overcome with knowledge, preparation, patience, and persistence.

♦ ♦ ♦ ♦ ♦

Attorney Dennis Liotta, a partner at the law firm of Edgar Snyder & Associates, has over 20 years of experience and has helped people with physical and mental disabilities get Social Security disability benefits. For a comprehensive overview of SSD, with answers to commonly asked questions, download a free guide at edgarsnyder.com/ssd-guide.

This article was originally published in Coping® with Cancer magazine, January/February 2012.

Living with Uncertainty

 

While no one wants to think about it, every cancer survivor needs to be prepared for the chance that their cancer may come back some day. This is very hard to think about, especially right after successful cancer treatment. But not being aware of this possibility could be dangerous to your long-term health. There are some things you can do and things you should know that will help you deal with the uncertainty of cancer recurrence.

Keep your health insurance
You already know that having cancer is very expensive. Your first cancer experience probably cost a lot of money. You may have had to change your work schedule or job status because of the side effects of a certain treatment. Your partner may have had to take time off work to help you. These changes affect your finances.

Though money may be tight, keep your health insurance if at all possible after you have finished your first cancer treatment. You will need regular followup care for many years. Unless you are over 65 and can get Medicare, it can be hard to get medical insurance, especially if your cancer comes back. Insurance is expensive, but cancer treatment is even more costly. There are some options for uninsured people who need cancer treatment, but they are not easy to get or inexpensive. There are no “free” government programs to pay for cancer care.

For some people, going back to work after having had cancer is very hard to do, but they feel they cannot look for a different job because they are afraid to lose their health insurance. Although the Health Insurance Portability and Accountability Act (HIPAA) is supposed to help you to get insurance coverage when you change jobs, some people worry about the risk of having different coverage in a new job. Although employers are not legally allowed to discriminate against hiring people who have had cancer, cancer survivors are often afraid to look for a new job. They are also afraid to discuss their cancer with a new employer. For ideas on how to handle this, you may want to see our document, Off Treatment: Financial Guidance for Cancer Survivors and Their Families, which you can get by calling our toll free number (800) 227-2345. It also helps to know what rules the employer must follow. You may also want to read our documents about the Americans With Disabilities Act, HIPAA, and COBRA.

Keep your follow-up visits with your doctor
While there is no guarantee that seeing your doctor regularly will keep the cancer from coming back, it will help find any recurrence as early as possible. The earlier cancer is found, the easier it is to treat. It is also reassuring to know that your doctor is closely watching you to be sure there are no signs of cancer recurrence. Continue to talk with your health care team. Let them know how you are feeling and discuss any concerns you might have. One of the greatest benefits you will get from the follow-up visits with your doctor will be peace of mind.

Get the tests your doctor suggests
You will need to have some tests done as part of your follow-up after cancer treatment. These will help your doctor be sure that you stay in remission (without evidence of disease). The tests will vary depending on the type of cancer you had.

One of the greatest benefits you will get from the followup visits with your doctor will be peace of mind.

For example, if you have prostate cancer and were offered close follow-up but no immediate treatment (this is often called watchful waiting), follow-up tests may include a digital rectal exam (DRE) and PSA (prostate-specific antigen) test every 6 months. A needle biopsy of the prostate gland would likely be done within 6 months, be repeated within 18 months, and done any time after that if it looks like the cancer is growing.

The follow-up for certain early-stage bladder cancers after treatment includes a visit to your doctor every 3 months for the first year, then at regular intervals after that. During these visits, your doctor will likely do a cystoscopy (look at the inside of your bladder with a cystoscope – a slender tube with a lens and a light) and collect a urine sample to check for bladder cancer cells.

As you can see, each follow-up schedule is different based on the specific cancer. Talk to your health care team about what your follow-up care is going to be, what is expected of you, and what you can expect of them during this time.

It is tempting to avoid following all the steps and tests required in follow-up. By the time you have completed treatment for cancer, you may be tired of being a cancer patient – you may just want to forget about this part of your life and move on. It is understandable to want to avoid tests and doctors that make you face the possibility that your cancer has returned. This is a natural impulse, but not a wise choice.

Keep copies of your cancer treatment records and tests
As you complete your cancer treatment, talk with your doctors about getting copies of all your important cancer treatment information. Most hospitals and treatment facilities keep patient records only for a few years before destroying them. Even if your cancer doesn’t come back, your primary care doctor will need to know about your surgery, biopsies, chemo drugs, and radiation dose. And if you change doctors, it is important that you be able to give your new doctor the details of your diagnosis and treatment. Make sure you have this information handy:

• A copy of your pathology report(s) from any biopsies or surgeries
• A copy of your operative report(s) if you had surgery
• Copies of x-rays and scans (on a CD if you can get them in that format)
• A copy of the discharge summary that doctors prepare when patients are sent home, if you were hospitalized
• A copy of the treatment summary, if you had radiation therapy
• A list of your drugs, drug doses, and when you took them, if you had chemo or targeted therapy

The doctor may want copies of this information to add to your record, but always keep copies for yourself.

Talking with others who are in situations like yours can help ease loneliness. You can also get useful ideas from others that might help you.

Learning to live with uncertainty
Worrying about the cancer coming back (recurring) is normal, especially during the first year after treatment. This is one of the most common fears people have after cancer treatment. And even many years after treatment, this fear may still be in the back of your mind. As time goes by, many people say that their fear of cancer returning decreases and they find themselves thinking less often about their cancer. But even years after treatment, some events can make you worry about your health. These may include:
♦ Follow-up visits
♦ Anniversary events (like the date you were diagnosed, had surgery, or ended treatment)visits
♦ Birthdays u Illness of a family membervisits
♦ Symptoms much like the ones you had when you first found you had cancervisits
♦ The death of someone who had cancer

Here are some ideas that have helped others deal with uncertainty and fear and feel more hopeful:
♦ Be informed. Learn what you can do for your health now and about the services available to you. This can give you a greater sense of control.
♦ Be aware that you do not have control over some aspects of your cancer. It helps to accept this rather than fight it.
♦ Be aware of your fears, but don’t judge them. Practice letting them go. It is normal for these thoughts to enter your mind, but you do not have to keep them there. Some people picture them floating away, or being vaporized. Others turn them over to a higher power to handle. However you do it, letting them go can free you from wasting time and energy on needless worry.
♦ Express feelings of fear or uncertainty with a trusted friend or counselor. Being open and dealing with emotions helps many people feel less worried. People have found that when they express strong feelings, like fear, they are more able to let go of these feelings. Thinking and talking about your feelings can be hard. While it is important not to let cancer rule your life, it may be hard to do. If you find cancer is taking over your life, it may be helpful to find a way to express your feelings.
♦ Take in the present moment rather than thinking of an uncertain future or a difficult past. If you can find a way to feel peaceful inside yourself, even for a few minutes a day, you can start to recall that peace when other things are happening – when life is busy and confusing.
♦ Work toward having a positive attitude, which can help you feel better about life now.
♦ Use your energy to focus on wellness and what you can do now to stay as healthy as possible. Try to make healthy diet changes. If you are a smoker, this is a good time to quit.
♦ Find ways to help yourself relax.
♦ Be as physically active as you can.
♦ Control what you can. Some people say that putting their lives back in order makes them feel less fearful. Being involved in your health care, getting back to your normal life, and making changes in your lifestyle are among the things you can control. Even setting a daily schedule can give you more power. And while no one can control every thought, some say they’ve resolved not to dwell on the fearful ones.

Get support
Emotional support can be a powerful tool for both survivors and families. Talking with others who are in situations like yours can help ease loneliness. You can also get useful ideas from others that might help you.

There are many kinds of support programs, including individual or group counseling and support groups. Some groups are formal and focus on learning about cancer or dealing with feelings. Others are informal and social. Some groups are made up of only people with cancer or only caregivers, while others include spouses, family members, or friends. Other groups focus on certain types of cancer or stages of disease. The length of time groups meet can range from a set number of weeks to an ongoing program. Some programs have closed membership and others are open to new, drop-in members.

It is very important that you gather information about any support group you are considering. Ask the group leader or facilitator what types of patients are in the group and if anyone in the group is dealing with fears about recurrence or survival.

Online support groups may be another option for support. The Cancer Survivors Network, an online support community supported by your American Cancer Society is just one example. You can visit this community at csn.cancer.org. There are many other good communities on the Internet that you can join as well.

Some people feel better having a person-to-person connection with a counselor who can give one-on-one attention and encouragement. Your doctor may be able to recommend a counselor who works with cancer survivors.

Religion can be a source of strength for some people. Some find new faith during a cancer experience. Others find that cancer strengthens their existing faith or their faith provides newfound strength. If you are a religious person, a minister, rabbi, other leader of your faith, or a trained pastoral counselor can help you identify your spiritual needs and find spiritual support. Some members of the clergy are specially trained to help minister to people with cancer and their families.

Spirituality is important to many people, even those who don’t practice a formal religion. Many people are comforted by recognizing that they are part of something greater than themselves, which helps them find meaning in life. Meditation, prayer, practicing gratitude, and spending time in nature are just a few of the many ways that people address spiritual needs.

Support in any form allows you to express your feelings and develop coping skills. Studies have found that people who take part in a support group have an improved quality of life, including better sleep and appetite. You can contact your American Cancer Society to find out about available sources of support in your area.

♦ ♦ ♦ ♦ ♦

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

This article was originally published in Coping® with Cancer magazine, January/February 2012.

Fighting for Two

by Roxanne Martinez

Imagine learning you are pregnant, then being diagnosed with an aggressive breast cancer days later. That was the predicament I found myself in last November. Days after receiving the devastating diagnosis and with a whirlwind of emotions, I scheduled my first obstetrician appointment and my initial meetings with my surgeon and oncologist – all on the same day.

My obstetrician appointment was scheduled earlier in the day. It was then that I first heard my baby’s heartbeat. The staff seemed reluctant to offer an ultrasound, but I jumped at the opportunity to see that there really was a little life growing inside of me. Although my baby looked like nothing more than a small speck on the screen at the time, I wanted nothing more in life than to meet her.

Not knowing enough about my diagnosis, my obstetrician advised that I wait until after I met with my oncologist and established a treatment plan to determine the best course of action for the pregnancy. But it was too late; I had already made up my mind. I would be fighting this battle for two.

Subsequent meetings with my surgeon and oncologist disheartened me at first. Neither was highly experienced with treating a pregnant woman with breast cancer. However, both reassured me that there was extensive research that proved promising for pregnant women battling breast cancer. While my physicians consulted with other experts and collaborated on the best treatment plan, I looked to the Internet to do my own research – research that would completely consume me for countless days and even more sleepless nights.

On the day that I was supposed to receive my final chemo treatment, I instead gave birth to my daughter.

Online, I found Hope for Two, an organization dedicated to providing support to women diagnosed with cancer while pregnant. Through this resource, I was able to connect with a doctor who was researching cancer during pregnancy. Her knowledge, along with my physician’s assurance, gave me the confidence I needed to proceed with treatment.

Because I was diagnosed with stage II, triple negative breast cancer early in my pregnancy, my physician recommended that I have a mastectomy first and wait until my second trimester, when the baby’s organs were fully developed, to begin chemotherapy. Even though I experienced some dreadful effects from chemo, I was told that my baby would probably only experience mild side effects, such as a low birth weight and possibly baldness.

The physical side effects of treatment were only part of the battle. Coping with breast cancer while pregnant was a totally different beast. There was absolutely nothing any doctor could tell me that would completely alleviate all my fears. I wouldn’t be at ease until I could physically see and hold my baby in my arms.

They say it takes a village to raise a child. In my case, it took a nationwide network of supporters, nicknamed “Team Roxy,” to help get me through one of the toughest fights of my life. My closest family and friends helped me hold tight to my faith, raised funds for my medical expenses, and kept my spirits uplifted. But it was fellow survivors that gave me hope. Through social networking sites, such as Twitter and Facebook, I was able to connect with a few other women who had recently battled the same diagnosis while pregnant. They now had healthy babies and had photos to prove it.

A few days after my fifth round of chemo, too early to deliver, I began having sharp pains and was admitted to the hospital. Every time the nurse tried to fasten the monitor on my swollen belly, my baby moved and kicked. “You have a feisty little one in there,” the nurse told me. It was then I knew I was not fighting alone. We were in this battle together.

I would have two more rounds of chemo before I was back at the hospital with even sharper, more intense pains that turned out to be contractions. On the day that I was supposed to receive my final chemo treatment, I instead gave birth to my daughter. Born six weeks premature, but perfectly healthy, my tiny miracle had arrived and I finally had serenity. Thus, her name would be Serenity Milagros – Milagros meaning miracles in Spanish.

Unlike me, who was completely bald, Serenity was born with a full head of hair. Something about that reassured me that I had done my job as her mother in protecting her from harm. Five days after delivery, Serenity and I were able to go home. Within the first few months, she grew and flourished, while I recovered from a long and grueling battle. I still look at Serenity with amazement in the fact that I brought forth new life while fighting for my own.

On the toughest days of treatment, the life growing inside of me was all the motivation I needed to remain strong. Thus, I knew I wanted to be a part of an organization that would help other women in my shoes. So I signed up for the Hope for Two national registry and agreed to donate my placenta to advance research on how chemo affects unborn babies. I am also a support person for other women battling cancer while pregnant.

♦ ♦ ♦ ♦ ♦

Roxanne Martinez is a breast cancer survivor living in Fort Worth, TX. She is enjoying her role as a new mom and is dedicated to helping other women battle breast cancer. Visit Roxy at team-roxy.com.

Learn more about pregnancy and cancer at pregnantwithcancer.org. Hope for Two… The Pregnant with Cancer Network is a national non-profit organization for women diagnosed with cancer during pregnancy.

This article was originally published in Coping® with Cancer magazine, January/February 2012.

Cancer and Fertility – Young Women Speak Up

Young female cancer survivors express their concerns and frustrations about the impact of both their disease, and its treatment, on their future fertility

 

Young female cancer survivors are concerned about their future fertility and parenthood options and want better information and guidance early on, according to a new study by Jessica Gorman and her team from the University of California in the US. Their paper, which presents in-depth information on young survivors' experiences navigating decisions about fertility and parenthood, is published online in Springer's Journal of Cancer Survivorship.

Many more adolescents and young adults are surviving their disease, resulting in a substantial and growing number of female cancer survivors of reproductive age. Young cancer survivors are less likely to have biological children than non-cancer survivors, mainly due to the effects of cancer treatments on future fertility. However, many are unaware of the impact of their treatment on their fertility, and understanding these young ladies' concerns is a first step towards developing effective, targeted interventions that will meet the needs of those who want to become parents.

It's critical for both researchers and clinicians to understand young female survivors' concerns about fertility and parenthood in order to address them adequately.

The researchers explored the fertility and parenthood concerns of 22 American female cancer survivors, aged between 18 and 34 years. The young women, recruited from both clinics and community-based outreach projects, took part in focus groups. The authors identified six themes from the discussions:

1. A hopeful but worried approach to fertility and parenthood
While participants expressed hope about having a family, many also felt anxious that they would be unable to have their own children.

2. Frustration with lack of choice or control over fertility
Even though the young women acknowledged that a discussion about fertility at the time of diagnosis would have been overwhelming, they felt strongly that they (or their parents) should have been told about both the impact of treatment on their fertility, and the options available before treatment to preserve fertility e.g. freezing eggs.

3. Young survivors want information about their fertility
Several women reported with regret that their doctors had not talked to them about fertility and they felt that a young woman was old enough to have this discussion anytime after puberty.

4. Young survivors want better continuity of care in survivorship
Many were frustrated with the poor coordination of care between their multiple medical providers, including care related to fertility and pregnancy planning. They felt that each practitioner focused on his or her specialist issue, rather than the bigger picture.

5. Cancer diagnosis and related fertility problems introduce relationship challenges
Young women were concerned about this both in the early stages of a relationship and in a more stable relationship.

6. Decisions about parenthood are complicated
Participants listed both emotional (worry about their personal health and life expectancy, as well as worry about their potential child's health) and practical (mainly financial) barriers to parenthood.

"It's critical for both researchers and clinicians to understand young female survivors' concerns about fertility and parenthood in order to address them adequately. Our results suggest that these young women would benefit from improved information regarding their options, through discussions initiated by their healthcare providers, better coordination of care in survivorship, and guidance and support in navigating both emotional and practical issues that arise when considering fertility and future parenthood," says Gorman and her team.

♦ ♦ ♦ ♦ ♦

Source: Springer's Journal of Cancer Survivorship, www.springer.com

Getting a Good Night’s Sleep

by Carol A. Enderlin, PhD, RN, and Martha Kuhlmann, MSN, FNP, PMHCNS

Sleep is an important way that our bodies restore our energy “charge” to keep us going. Seldom is sleep more important than when facing cancer. But sleep is so finely tuned to how we feel physically and mentally that it may be challenging when we need it the most. Understanding how sleep works can give insight into ways to improve sleep while coping with cancer.

How Sleep Works
The fine balance between being awake or asleep is maintained by a build-up of pressure either to wake up (after meeting sleep needs) or to sleep (after staying awake). This balance is disturbed if sleep is too short or interrupted frequently. Often, daytime naps are taken to make up for poor nighttime sleep. If naps are long or taken late in the evening, they may interfere with the normal pressure to sleep at night, causing your days and nights to be “mixed up.” The American Academy of Sleep Medicine and National Sleep Foundation recommend taking short naps (30 minutes) as needed before 3:00 p.m. to prevent interference with nighttime sleep.

Getting a good night’s sleep is essential to coping well with cancer.

Sunlight is important for sleep. It stimulates the daily production of melatonin, a hormone that peaks at bedtime and promotes sleep. If you stay indoors most of the time, you may not get the sunlight your body needs to sleep well at night. Sunlight is also good for bone health and depression. Taking a short outdoor walk daily can promote nighttime sleep, strong bones, and a more positive outlook.

Good Sleep Habits
As “creatures of habit,” having a regular sleep routine can help us be ready for sleep. Reserving the bedroom for sleep (and sex), unless ill, helps you become conditioned to fall asleep when in the bedroom. Activities like watching television or using the computer in bed can condition you to stay awake instead. Keeping regular sleep and wake times, even if awakened during the night, helps strengthen the pattern of nighttime sleep and daytime wakefulness. Irregular sleep and wake times make it harder for us to separate sleep and wakefulness. Routines like taking a warm shower before bedtime can help signal you to “wind down for the day.” Warm showers promote sleep by helping muscles relax and decreasing body temperature. Scented soap or lotion, like lavender (if tolerated), may promote relaxation through very gentle rubbing and massage and signal sleep time.

Although daytime exposure to sunlight helps us to sleep better at night, a dark environment is best for nighttime sleep. Window coverings should block environmental light from sleeping areas. Television and computer screens project very bright light, which interferes with deep sleep, and should be turned off or be located in a different room. Sleep masks are an alternative.



Martha Kuhlmann

Environmental noise may interfere with falling asleep or reaching deep sleep. Using “white-out” background noise, like an air purifier or fan, may block out unwanted sound. Earplugs are an alternative.

Worry or difficulty “turning off your mind” at bedtime may delay sleep. Using simple relaxation methods like slow deep breathing, prayer, meditation, music, or guided imagery tapes may help you relax and focus on more positive thoughts. Set aside time early in the day to deal with demanding tasks and avoid them at bedtime.

Exercise, nicotine, and caffeine should be avoided at least three hours before bedtime to prevent stimulation of wakefulness. Alcohol should also be avoided three to six hours prior to bedtime, as it initially causes drowsiness but results in early morning awakening.

Pets may not share the same sleepwake patterns as humans. Cats are nocturnal by nature, sleeping during the day and active at night. Dogs may adopt their masters’ sleep routines but awaken to bark at environmental noise. Sleeping separately from pets may prevent sleep disturbance.

Sleep Management
Sleep disorders may be present before a diagnosis of cancer or develop during treatment. Daytime sleepiness that interferes with daily function or uncomfortable leg sensations that worsen with sitting or lying down should be discussed with your healthcare provider. Difficulty falling asleep, staying asleep, or awakening too early are common problems for people with cancer. Medication may be prescribed for new symptoms, or you may be referred to a sleep medicine specialist for evaluation and treatment.

Self-awareness and practice of good sleep habits is important. If sleep disturbance develops or worsens, discuss concerns with your healthcare provider as soon as possible. Getting a good night’s sleep is essential to coping well with cancer.

♦ ♦ ♦ ♦ ♦

Dr. Carol Enderlin and Martha Kuhlmann are faculty in the College of Nursing at the University of Arkansas for Medical Sciences.

This article was originally published in Coping® with Cancer magazine, January/February 2012.

The Role of Social Workers in Cancer Care

by Kathryn Brzozowski, LCSW

As a cancer survivor, you have a large team of professionals on your side. At this point in your journey, your body is going through a lot, which is why you have a group of competent and caring physicians, nurses, dietitians, pharmacists, and radiation therapists all working together to provide the best cancer treatment possible. However, it is important to also keep in mind that a diagnosis of cancer doesn’t only impact your body. Cancer can affect a person and their loved ones on many different levels – mentally, emotionally, interpersonally, practically, and financially. A cancer diagnosis can turn your world upside down, making it difficult at times to make sense of things in life that used to be perfectly understandable. A fight with your spouse, a late mortgage bill, a tearful morning…these all take on incredibly different meanings after a cancer diagnosis. Because cancer is a medical illness, the widespread effects it has on the other parts of your life can be unexpected and feel unmanageable.

Fortunately, there are professionals on your treatment team that are there specifically to help you as you encounter the many ways a cancer diagnosis may impact your life. Oncology social workers are highly trained professionals available to help cancer survivors and their families when they need it most. Support, insight, and compassion are highly important as you try to navigate the confusing and sometimes frightening new world of a cancer diagnosis and cancer treatment. Your oncology social worker is there to provide that support and to do everything they can to make this journey easier.

Support, insight, and compassion are important as you try to navigate the new world of a cancer diagnosis and cancer treatment.

If you have never met with a social worker before, you might be unsure of what a social worker is or what kind of services he or she can provide. Social workers are commonly portrayed in the media as working in child protection or public welfare, and while some social workers do work in that capacity, you can find professional social workers in a multitude of settings, including schools, jails, nursing homes, and hospitals. In fact, social work has had a long presence in the medical world; Ida Canon was the first hospital social worker at Massachusetts General Hospital in 1905. Currently, there are 600,000 professional social workers; only those who have earned social work degrees and completed a minimum number of hours in supervised fieldwork, are “professional social workers.” According to the Handbook of Psycho-Oncology, “oncology social workers are primary providers of psychosocial services in major oncology treatment centers and community healthcare settings throughout the world, both because of their knowledge about cancer and its psychosocial impact, and because of their practice versatility.” Social workers use a systems focus that emphasizes a person-in-environment approach, allowing the social worker to take into consideration the many challenges you may be facing at that moment without isolating particular aspects of your situation.

There are many ways an oncology social worker may be able to assist you. They can help you cope with the diagnosis of cancer and the “emotional rollercoaster” you may be feeling. They can support you as you decide on treatment options, teach you techniques to improve communication and relaxation, or make referrals to community resources if you have practical needs. Social workers can provide individual and family counseling and facilitate support groups and educational programs.

Oncology social workers are trusted professionals with the knowledge and skill to help ease the difficulties that cancer survivors often face. Even if you aren’t sure exactly what an oncology social worker can do to help you and your situation, meeting with one enables you to get to know an important member of your treatment team.

♦ ♦ ♦ ♦ ♦

Kathryn Brzozowski is a licensed clinical social worker in private practice. Kathryn has spent the majority of her career in oncology, providing counseling, case management, crisis intervention, and support to cancer survivors and their families and is currently working on her doctorate in social work at The University of Pennsylvania.

For more information on oncology social work, visit the Association of Oncology Social Workers website at aosw.org.

This article was originally published in Coping® with Cancer magazine, January/February 2012.

Arte Johnson

Reflections on living with cancer

 

Not many people can say they were discovered on Broadway. Even fewer can say their cancer was discovered on Broadway. But that's exactly where veteran actor and comedian Arte Johnson was in 1997 when, due to an unusual set of circumstances, he realized that something wasn't right.

"I was doing Candide with Hal Prince at the Gershwin Theater," Johnson remembers. "I was doing eight shows a week and playing several different roles. My family doctor, who had come to see the show, turned to me and said, 'You're really working hard. I never expected anybody to work that hard at your age.' It was more a chronological question than it was a physical question."

Arte told his doctor that he felt well, adding that he had noticed a slight swelling under an arm one night but that it had gone away immediately. Not liking the sound of the actor's reply, the physician referred Johnson to another doctor in New York. "He looked me over, sat me down, and said to my wife and me, 'Somehow, I think you have lymphoma.' It didn't bother me at the time. I said, 'So what do we do about it?' And that was the sum total."

A CAT scan showed a growth in Johnson's right lung behind his heart, tucked out of sight of a traditional x-ray. "Ostensibly, I came back to Los Angeles from New York to have the benign tumor removed," Arte recalls. "That's when they discovered the lymphoma."

As one of his Emmy-winning Laugh-In characters might have said, "Verry interresting ... but stupid!"

Hoping to head off speculation, Johnson took his story to the media. "My own admission was used in one of the tabloids," he explains. "It was at the time of Princess Diana's death, and they were trying to get a respectable story after all that had happened. I came out of the closet, in a sense, with their agreement that they would utilize it in a positive way - and they did."

Unfortunately, not everyone took the news so well. Johnson had reached an accord regarding a work agreement and was shocked to find that, "Upon discovery that I had cancer, this party withdrew its offer." As one of his Emmy-winning Laugh-In characters might have said, "Verry interresting ... but stupid!"

This knee-jerk reaction was taken in stride by Johnson, who had faced real life challenges growing up on a farm in southern Michigan. "It's understandable in a sense, given the expense of doing a production," he says. "Much of cancer is still a mystery. But on the other hand, to discover that suddenly you're on the outside looking in because of something you have no control over is rough.

"There's a genuine fear about cancer," Johnson admits. "I've had people say, 'Will you still kiss your wife?' You look at them and say, 'Yeah. Why?' and they say, 'Aren't you afraid?' You say, 'Afraid of what?' Some people still think you're dealing with a communicable disease."

As a regular on the cancer survivors speakers circuit, Johnson, whose film credits include The Third Day, The President's Analyst and many others, is part of a growing community of survivors. He considers such people to be the greatest weapon America has to fight ignorance about cancer. "You say 'cancer' and some people immediately go into a complete tailspin," he says; "but the truth of the matter is that there are an awful lot of people surviving cancer."

"He looked me over, sat me down, and said to my wife and me, 'Somehow, I think you have lymphoma.' "

An avid travel buff, the veteran funnyman has taken several cruises since being diagnosed with cancer, "I run into so many people who are survivors," he notes, "and they have a very positive attitude. You just handle it as it comes. You take it day by day."

Johnson has performed in front of countless audiences since making his Broadway debut in Gentlemen Prefer Blondes. He has worked as a sportscaster and has appeared with such diverse groups as the San Francisco Opera and the Grand Ole Opry. But when it came to his own recovery, Arte preferred an individual approach. While support groups and self-help books are useful for many, these did not appeal to the California resident while he was undergoing treatment.

"Somebody sent me a carton full of books on cancer," he recalls. "I didn't want to read about it; I was living it." Instead, the talented performer surrounded himself with amusing books, jazz and his best friend, his wife of 30 years. "She was like the iron maiden during this whole thing," he boasts, "and it was only after everything cleared up that she became weighed down by the whole experience." Continuous support from her own friends helped her rebound.

Although Johnson did not participate in organized support groups, he did not sequester himself from life. "During the course of chemotherapy, I lost all my hair," he says, "but I didn't mind. We maintained a social life. We went out." This worked so well for him that Johnson heartily recommends it for other survivors. "Instead of pulling into yourself and locking yourself into the bed, get out. Sit outside. Watch the birds. Listen to the rustling of the leaves. There are so many things to life. You are alive until you die. While you're living, enjoy every moment!"

Arte Johnson's interest in performing remains, but he's "not pursuing it that valiantly. Cancer changes your outlook on life," he says. "I have more respect for life, and more enjoyment of it now." His last CAT scan was clear and Johnson doesn't expect a recurrence. However, if that were to happen, "I'll be there to fight it," he insists.

♦ ♦ ♦ ♦ ♦

This article was originally published in Coping® with Cancer magazine, July/August 1999.

CTRC-AACR San Antonio Breast Cancer Symposium

 

The 2011 CTRC-AACR San Antonio Breast Cancer Symposium was presented in December by the Cancer Therapy & Research Center at University of Texas Health Science Center at San Antonio, the American Association for Cancer Research, and Baylor College of Medicine. The driving force behind this collaboration is the shared mission of the organizations to advance progress in breast cancer research.

Highlights from the research presented include:

• Diabetes and Obesity Increase Risk for Breast Cancer Development
• Molecular Differences May Be Used to Predict Early vs. Late Hormone Receptor-Positive Breast Cancer Recurrence
• Brachytherapy Was Associated with Twofold Increased Risk for Mastectomy, Complications
• Zoledronic Acid Shows Long-Term Benefit in Survivorship for Premenopausal ER-Positive Breast Cancer
• Clodronate Appeared Safe, Modestly Affected Breast Cancer Disease Events
• Immediate Bisphosphonate Use with Endocrine Therapy Reduced Recurrence, Increased Survival in Postmenopausal Early Breast Cancer
• Dual HER2 Blockade Significantly Extends Progression-Free Survival
• Exemestane Plus Everolimus Increased Progression-Free Survival for Women with Metastatic Breast Cancer
• Addition of Bevacizumab to Conventional Therapy Improved Progression-Free Survival in HER2- Positive Breast Cancer
• Bilateral Oophorectomy Associated with Higher Prevalence of Low Bone Mineral Density and Arthritis in Younger Women
• Addition of Trastuzumab May Potentially Equalize Disease-Free Survival Outcomes Among Obese and Normal-Weight Patients
• MRI May be Noninvasive Method to Measure Breast Cancer Prognosis

♦ ♦ ♦ ♦ ♦

For more information on these studies, visit sabcs.org.

This article was originally published in Coping® with Cancer magazine, January/February 2012.

Daily Reminders

by David Kelley

Tinnitus is the correct medical term for it. What I call it is one of my daily reminders that at least I am alive and able to, literally, live with such things as the constant, sometimes louder, sometimes quieter but always present tinnitus. It’s that ringing, buzzing, droning, no longer annoying, always there side effect of my cancer treatment last year. Actually, it’s just one of the side effects of the cancer treatment.

Thirty-five radiation treatments, three chemotherapy sessions, and one surgery were necessary before I was deemed cancer-free. Cancer-free, yes, but the side effects will always be with me. Never will I ever complain about them, for they keep my perspective on life pretty well grounded. Never again will I take anything for granted, like the simple act of being able to swallow, and my ability to eat normally. For, you see, my cancer was termed head/neck cancer. And the location itself, to some degree, dictated the nature of the side effects of treatment.

The trivial moments are the most important.

There is absolutely no way that I could have gotten through my treatment without the incredible love, support, and encouragement of my family and friends. From the seemingly trivial phone calls, emails, and text messages to check on me, to the times when my yard was mowed, there is no way to adequately express the gratitude and appreciation toward those involved.

One learns a lot when faced with such a situation. A positive attitude and emotional outlook are crucial in recovery. Lying on the radiation table while the machine circles and sends its rays into your body, sitting in the chair in the chemo room with a needle in your arm for four hours and listening to the beeping while it drips, having your dinner poured through a tube – all of these can take a toll. Yet, you keep telling yourself that each day down is another day complete. Each session down is one less to be endured. “One more day, one more day, one more day,” is the mantra repeated over and over.

Fortunately, I am able to live with the physical side effects of treatment. Some of the other side effects are more sublime and meaningful. Tailgating at Arrowhead Stadium, listening to the rain, sitting on the patio, simply living… everything has more meaning and more enjoyment. The trivial moments are the most important; the seemingly more important sometimes become the more trivial and irrelevant. Mowing the yard, fighting the gophers in my garden, grilling – it’s the little moments in life that now have more significance and value. That is perhaps the greatest side effect of all.

  

  

♦ ♦ ♦ ♦ ♦

David Kelley is a head/neck cancer survivor.

This article was originally published in Coping® with Cancer magazine, January/February 2012.

Coping with the Side Effects of Cancer Surgery

 

Cancer surgery, like all cancer treatments, comes with benefits, risks, and side effects. The types and intensity of side effects vary from person to person and with the type and location of the cancer, the type of surgery, and the person’s health. If you and your doctor decide that surgery will be a part of your cancer treatment, you will be given information about all aspects of your treatment before you consent to surgery, including the side effects you may experience.

With recent advances and less-invasive surgical techniques, the side effects of surgery are often milder, and people usually recover faster. In addition, doctors have made major strides in recent years in reducing pain and other physical side effects from all types of surgery. Your healthcare team will work with you to ease or prevent side effects.

Common Side Effects of Cancer Surgery

Pain
It is common to have some pain after any surgery. The amount and location of the pain depends on many factors, including the site of surgery, the size of the incision, and the amount of tissue removed. Pain after surgery resolves gradually as the body heals. Pain medications are given after surgery to decrease the discomfort that the person feels while the healing occurs.

With recent advances and less-invasive surgical techniques, the side effects of surgery are often milder, and people usually recover faster.

Fatigue
Many people feel very tired after major surgery, especially when the surgery involves the abdomen or chest. This is due to a combination of factors, including the anesthesia, the body’s tendency to divert energy to the healing process after the surgery, the reduction in the amount of food eaten in the period immediately after the surgery, and the stress of the surgery. Fatigue usually resolves gradually within two to four weeks after the surgery is performed.

Loss of Appetite
Poor appetite after surgery is very common, especially when general anesthesia was used. This generally lasts for two to four weeks after surgery and may be associated with a temporary weight loss. Most people regain their appetite and return to their normal weight as the effects of the surgery wear off.

Swelling Around the Site of Surgery
A surgical incision (cut in the skin) is a form of injury to the body, and the body’s natural response to injury is the inflammatory process, which results in swelling. Swelling occurs because fluid containing chemicals from white blood cells accumulates in the injured tissues to attack foreign substances. As the healing occurs after the surgical procedure, the inflammation resolves, and the swelling goes down. It is natural to experience some swelling after any surgical procedure.

Drainage From the Site of Surgery
Sometimes the fluid that accumulates at the surgery site drains through the surgical wound. This is normal. However, if the drainage is foul smelling or associated with fevers and redness, it may be a sign of infection, and you should contact your surgeon’s office to have it evaluated.

Ecchymosis (Bruising) Around the Site of Surgery
After any surgical incision, there may be some leakage of blood from the small blood vessels under the skin. This can cause bruising, which is a common occurrence after a surgical procedure. However, if there is a significant swelling associated with the bruising, contact your surgeon’s office to have it evaluated.

The emotional side effects of cancer surgery are as important to treat as physical side effects.

Bleeding
In every surgical procedure, there is some blood loss. In most cases, the amount of blood loss is minimal, and it does not affect the normal function of the body. In some surgical procedures, a larger amount of blood loss is expected, and the surgical team may have blood available for transfusion. Occasionally, you may experience some bleeding from the wound after a surgical procedure. If this occurs, cover it with a clean, dry dressing, and contact your surgeon’s office. If there is a large amount of bleeding, it is helpful to apply pressure until you can be evaluated in your surgeon’s office or the local emergency room.

Infection
This may occur at the site of the incision, or cut. Surgeons take great care to minimize the risk of infection during the operation, and your healthcare team will teach you how to care for yourself during recovery. Signs of infection in a surgical incision include redness, warmth, increased pain, and, in some cases, drainage from the wound. If these signs occur, contact your surgeon’s office to have the wound evaluated. Antibiotics, in pill form or by injection, are effective in treating most infections.

Lymphedema
This is another common side effect that may occur after a lymph node dissection (the removal of lymph nodes). Lymph nodes are small glands that filter bacteria and other harmful substances from the lymph fluid, a colorless fluid in most tissues of the body. Sometimes, when the lymph nodes are removed, lymphatic fluid collects in the surrounding tissues, causing them to swell; this is called lymphedema, and it can result in discomfort and tightness. Lymphedema occurs in less than one third of all people who undergo lymph node dissection procedures. Your surgeon will discuss the risk of lymphedema with you before a planned lymph node procedure.

Organ Dysfunction
Cancer surgery in some areas of the body, such as the abdomen or chest, can sometimes cause temporary problems with the organs in that area. For example, when surgery is performed in the abdomen, the bowels may become paralyzed for a short time (also called an ileus), not allowing the contents of the bowels to pass through. This can result in nausea and vomiting until the bowels begin to function again. Organ dysfunction after surgery is usually temporary and resolves as the healing process proceeds.

Other Concerns After Cancer Surgery

Dietary Concerns
During recovery, the body needs extra calories and protein for healing; however, eating your regular food may be difficult, depending on the location where the surgery was performed. Resection (removal) of any part of the mouth, throat, stomach, small intestine, colon, or rectum can decrease appetite, limit the body’s ability to absorb nutrients, and increase problems after eating, such as gas, cramping, or constipation. Some people may have difficulty chewing or swallowing food. In addition, surgery for stomach cancer may affect the body’s ability to absorb certain vitamins. Doctors usually prescribe vitamin supplements, some of which can be given only by injection, to help ease this problem.

Body Image
Cancer surgery causes physical changes that may alter the way your body looks and feels and how it functions. For example, surgery for bladder and colorectal cancers may affect the removal of waste products from the body. If the bladder is removed, a new way to store and remove urine is needed. A urostomy (connection between the urinary organs and the skin) may be created during the surgery to divert urine to the outside of the body. Similarly, if the lower part of the rectum is removed, a temporary or permanent colostomy may be needed. A colostomy is a surgical opening, or stoma, through which the colon is connected to the skin surface to provide a pathway for waste to exit the body. Such waste is collected in a pouch worn by the person.

Some people may feel insecure about these changes and struggle with their body image. The emotional side effects of cancer surgery are as important to treat as physical side effects. Talk with your doctor about options for reconstructive surgery and prostheses. Some people find it helpful to join a support group of other people in similar situations.

Sexuality and Reproduction
Certain types of surgery can affect fertility (a woman’s ability to conceive a child or maintain a pregnancy and a man’s ability to father a child). Before treatment begins, talk with your doctor about the possible fertility-related side effects of your treatment and the available options for preserving fertility.

In addition, depending on the location of the surgery, both men and women may experience other sexual side effects. For example, men undergoing surgery for prostate, bladder, colorectal, or other types of cancer may experience changes in their sexual desire and production of semen. The ability to have an erection or the ability to ejaculate may be affected. Meanwhile, some gynecologic surgical procedures may affect sexual function for women as well. And many women experience a range of feelings after such surgery, including loss, sadness, or anxiety. It is important to discuss the symptoms you experience with your doctor. There are various options available to help manage the sexual problems you may encounter.

♦ ♦ ♦ ♦ ♦

Reprinted with permission from www.cancer.net. ©2011 American Society of Clinical Oncology. All Rights Reserved.

This article was originally published in Coping® with Cancer magazine, November/December 2011.

Creativity and Coping

by Monica Armstrong

Picture a visual artist painting her way through life, focused on beauty and meaning and cherishing the peaceful process of creative work. One evening the phone rings, and the word “cancer” drains all the colors away. Bleakness enters as fear blackens her vision of life.

From the moment of that first shocking phone call with the diagnosis of breast cancer, my mind would not give me a break. How many hours, how many nights were trampled by fearful thoughts of the unknown? Too many, especially when time seemed particularly precious.

Anxiety took the lead for a while. I proceeded through the medical system, trusting in the “kindness of strangers.” By the time I finished treatment, I felt lost to my old self and so very tired. My situation cost me my marriage, my home, and for a while, my identity.

However, I still had art. And I had the urge to honor the kindness and strength I had seen and experienced from others throughout this journey. In particular, while going through my daily treatments, I was moved by the head frames of those undergoing head and neck radiation. As they rested on the shelves, they gave me more awareness of the challenges others faced. I was a companion to these individuals’ tribulations as they were a silent witness to mine. Images flooded into my heart of the quiet bravery of so many people I had met along the way.

Finished at last with treatment, I struggled with change and looming depression. One day I went back into my studio and began drawing for the first time in a long while. Not feeling up to anything ambitious, I dug out a little set of colored pencils and began to doodle. “Just for fun,” I assured myself.

In the blink of an eye, an hour passed without one second of fear or anxiety. My spirits were refreshed from that single attempt. I sought every opportunity from then on to get up and move past feelings of exhaustion, fear, and worry. I began to draw on my experiences with other survivors and medical professionals to create something of beauty. To capture the intangibles of kindness, courage, and generosity was my new creative challenge.

Filling up my mind with this intention caused the tide of negativity to begin to recede. Feelings of appreciation at what I had been given began to replace the anger and sadness about what I had lost.



“We Witness I”

Each day before doing artwork, I read a selection of poetry or short inspirational essays to help me cross the bridge from mind to heart. Setting the mood with uplifting, meditative music while drawing, I sat in a comfy recliner with a lap desk. I asked no more of my artistic attempt than the simple pleasure of freedom of expression and the joy of lovely colors. It was important to keep professional judgment at bay during this time, allowing no stress into the experience.

Sometimes even little drawings seemed too much to do on a difficult day. On those days my bedroom rocking chair, a stack of old magazines, and scissors sufficed. It was both relaxing and absorbing to cut out pictures. With this stack of evocative images, I began small collages. Pasting pictures on cardboards, each with different themes, I was able to better cope with the fluctuating moods so common to recovery. This gave me a way to express unspoken thoughts and feelings.

One theme was “places to go and things to do.” One was a record of good memories and wonderful people in my life. Another collage pictured new health habits and positive affirmations to help me grow. I gained insight about my options and willingness to do what I could to survive.

Doing these small creative projects helped me regain my footing. They enabled me to get up the courage and energy to go to a cancer support community, where I received tremendous help and information.

Now a five-year survivor, I have the chance to encourage others to tap into the restorative pleasures of art at the Cancer Support Community of Philadelphia. As an artist, teacher, and survivor, I can testify that healing and happiness thrive when people use their inner and (perhaps untapped) creative resources.

♦ ♦ ♦ ♦ ♦

Monica Armstrong specializes in fine arts, education, and spiritual direction. She creates survivor and creativity workshops, exhibits nationally, and creates large scale murals on both coasts. Her newest series, “Coming Through,” can be viewed at web.me.com/istrong1/MedArt/MedArt.html.

This article was originally published in Coping® with Cancer magazine, January/February 2012.

Couples Counseling Helps Improve the Sex Lives of Prostate Cancer Survivors and Their Partners

 

Both Internet-based counseling programs and face-to-face therapy sessions for couples improve the sex lives of prostate cancer survivors and their partners. That is the finding of a new study published in Cancer, a journal of the American Cancer Society. The results suggest that couples counseling can provide additional benefits to survivors’ sex lives beyond those experienced from medications like erectile dysfunction pills.

Despite efforts to make therapies for prostate cancer less destructive to men’s sex lives, most men who are treated end up with erection problems. Many also lose some desire for sex and have a diminished ability to reach or enjoy orgasms.

Both face-to-face therapy and Internet-based therapy were effective at improving men’s sexual function and satisfaction, based on scores from questionnaires.

Leslie Schover, PhD, of the University of Texas MD Anderson Cancer Center in Houston, and her colleagues tested the effectiveness of different strategies to improve the sex lives of prostate cancer survivors and their spouses. Their study included 115 couples in which the man’s prostate cancer treatment had taken place a little less than two years previously. At the start of the study, half of the couples waited three months for an intervention while the other half either went through three face-to-face sex therapy sessions or interacted with a website that presented the same information with email feedback from a counselor. A third group of 71 couples who lived too far away for face-to-face therapy also received Internet-based therapy.

After three months, no benefits were seen among couples in the waiting group, and they were then assigned to one of the two treatments. Both partners were asked to complete questionnaires that assessed sexual function and satisfaction before starting counseling, after the treatment, and at six-month and one-year follow-up.

Both face-to-face therapy and Internet-based therapy were effective at improving men’s sexual function and satisfaction, based on scores from questionnaires. Also, when the man’s score improved, the woman’s did as well. Even one year after the end of the counseling period, couples were still better off than before the program began. For those couples in the Internet-based version, however, only those who completed most of the Web program improved significantly.

Dr. Schover notes that while both types of interventions improved couples’ sex lives, an Internet-based program may be easier to implement than one that is conducted face-to-face. “An Internet-based treatment has the advantage of costing less in counselor time and allowing expert healthcare providers to help cancer survivors who live too far away from a city or cancer center,” she says.

♦ ♦ ♦ ♦ ♦

This article was originally published in Coping® with Cancer magazine, November/December 2011.

Fighting Back Against Melanoma

by Debra Black

About 10 years ago, I was diagnosed with melanoma in situ, which is a very early stage of this type of skin cancer. Luckily, it was something that could be addressed with a routine procedure. However, because of that diagnosis, I knew I remained at risk for skin cancer and was advised to see a dermatologist at least every three months for a full body exam, which I did.

Seven years later, I noticed what I thought was a wart on the bottom of my foot. It started to hurt and bleed. I was diagnosed with a large (4.2 mm) stage II melanoma, but the cancer had not yet spread.

The fact that the survival statistics and the treatment options for people with melanoma were so bleak motivated me and my husband, Leon, to take action.

Fortunately, our good friend Michael Milken is especially knowledgeable about cancer. Mike had a serious prostate cancer diagnosis and established the Prostate Cancer Foundation. PCF has led the way toward enormous progress for individuals at risk and for those who have been diagnosed with prostate cancer. Mike’s father had died from melanoma decades earlier, and together we determined that we would strive to do for melanoma what PCF had done for prostate cancer. With that, the Melanoma Research Alliance, an organization focused on the diagnosis, treatment, and eventual cures for this insidious cancer, was founded.

I am a cancer survivor, and I do not take that experience lightly. Creating MRA, along with the support of my family and friends, has helped me get through this most difficult time. It also has given me an added purpose. I am grateful to be one of the lucky ones. I have been able to watch my four children become young adults and involved members of the community.

MRA is funding research so that there will be better options for all people fighting this deadly disease and for everyone who is at risk. Our hope and determination is to reach a time when no one suffers or dies from melanoma. Our goal is to bring together all who are stakeholders in the field – in academia, government, and industry, from all parts of the world – to collaborate in finding melanoma treatments and cures. This past year has been a breakthrough moment in melanoma research, with two new promising medications approved by the FDA to treat people with metastatic melanoma. However, there is much more to be done. MRA remains committed to fast forward research to defeat this disease.

If I have any advice, it is this: Do not lose hope. Instead, become an active participant in your health. Also, become educated. Learn from the experiences of others and insist that everyone you care about fully examines his or her body.

♦ ♦ ♦ ♦ ♦

Debra Black is a melanoma survivor and co-founder and chair of the Melanoma Research Alliance, a nonprofit created under the auspices of the Milken Institute.

Visit the Melanoma Research Alliance website, curemelanoma.org, to learn more about the disease, the progress that is being made, ways to get involved, and what you can do to fight melanoma.

This article was originally published in Coping® with Cancer magazine, January/February 2012.

The Bet

by Jana Johnston Moritzkat

Amy agonized over losing her blonde cotton candy hair to the shower drain. Her poker straight locks were baby fine, and when she teased and coated them with hairspray they puffed up and swirled like spun sugar. The chemotherapy nurse had said her hair would begin falling out two weeks after her first treatment. That was three days ago.

Amy needed to have her head shaved. She couldn’t bear to look at herself in the mirror and see islands of wispy hair floating around her barren skull. But at the same time she couldn’t let her hair dresser know or suspect she had cancer. Amy didn’t want to be the talk of the salon and hear whispers or see sad looks or receive a card. She needed people to envy her, not pity her.

Needing a quick solution to her conundrum, she knew she could count on me. “Why don’t you go to another salon and say you want to shave it to see if it will grow back thicker,” I began.

“Absolutely not,” she informed me, “any hairdresser worth a darn knows from the dull lifeless texture of your hair that you’re undergoing chemotherapy, and I don’t want to talk to anyone about my breast cancer!”

Amy needed to have her head shaved. She couldn’t bear to look at herself in the mirror and see islands of wispy hair floating around her barren skull.

“How about a barber shop?” I retorted. “Men aren’t as suspicious and will never figure it out.”

She paused and I knew I had her. “Let’s go,” she said before she came up with another obstacle. Driving up the road, we got silly concocting stories about what we’d say and how the barber would react. It was so easy for us to revert to 14- and 10-year-olds.

When we arrived, we were having so much fun that we all but skipped up the wooden ramp and past the circulating barber pole, anxious to play our roles. The bell tinkled as I pushed open the door and we walked into a man cave. Dusty wooden floors and bare tobacco stain colored walls surrounded us. A few hooks hung near the door for coats. A row of maroon leather stools served as the waiting area across from two antique barber chairs. A lone barber dressed in his white double-breasted smock was adding the finishing snips to the top of a customer’s crew cut to make it bristle. We sat and I picked up an auto mechanics magazine.

The barber turned the client toward the mirror to view his new buzz and dusted his neck with a large powdered brush. The barber’s license was taped to the mirror. His name was Wayne. A shelf held a Barbasol jar with combs floating in blue liquid. Electric clippers swung from small hooks down near an overloaded electrical outlet next to the sink. “Looks great,” the client said as Wayne released him from his black cape. The client stood and reached for his wallet.

“Who’s next?” the barber asked, grabbing his broom.

“She is,” I said pointing my finger gun at Amy and firing. “She lost the bet, and I’m here to make sure she lives up to her end of the bargain.” Amy hopped into his chair. “Yes, that’s correct. I lost the bet, and I want you to shave me bald,” she smiled at me.

Thinking he looked good with his new haircut, the client pulled on his jacket and asked, “What was the bet about?” hoping for a good story to tell his buddies over a beer.

“Oh, it’s something that’s not polite to discuss in mixed company,” I answered. He shook his head and walked to the door. I flared my nostrils at Amy – our secret signal of disgust – and the bell tinkled, and the door closed behind him.

Wayne grabbed his clippers. “Totally bald?” he asked Amy. “Are you positive?”

“Yes, yes,” we giggled, “it will always grow back.”

Amy tilted her chin to her chest at the barber’s gentle touch. The clippers buzzed, and the barber shaved stripes of baldness from the back of her head forward. Her cotton candy tumbled to her shoulders and floated to the floor. This wasn’t a game; this was real. My baby sister had cancer. The corner of Amy’s mouth moved and her eye squinted. She was sad but so brave. I was sad too but proud of how she was coping and managing each obstacle that got in her way.

♦ ♦ ♦ ♦ ♦

Jana Johnston Moritzkat is a stay-at-home mom and supportive sister. She takes classes at the Writer’s Center in Bethesda, MD.

This article was originally published in Coping® with Cancer magazine, January/February 2012.

Country Music’s Eddie Montgomery

Back on Tour After Prostate Cancer

by Kaylene Chadwell

Eddie Montgomery began his journey toward becoming a honkey tonk superstar very young. At age five, he hit the stage with his parents’ band, joining the band full time in his teen years.

Thirteen years ago, Eddie and Troy Gentry joined forces and released their debut album as the duo Montgomery Gentry. They have experienced success from the get go and haven’t slowed down. Together, the singers have racked up CMA awards, ACM awards, a Grammy nomination, over twenty charted hits, and five No. 1 singles, including “Something to Be Proud Of,” “Lucky Man,” and “Roll with Me.” In addition to millions of albums sold, the two have sold out shows and been inducted into the Grand Ole Opry. Their latest album, Rebels on the Run, hit stores last October, and the single “Where I Come From” has already climbed its way into the top 20 of Billboard’s country chart.

When Eddie Montgomery discovered he had cancer, it was literally by accident. In late 2010, his son had a four wheeling wreck, breaking his shoulder in three different places. Eddie had to take his son to multiple visits with a bone specialist.

“I had it, got rid of it, and I’m ready to go.”

During one of those visits, Eddie spoke up about a pain he was experiencing in his hip, and the doctor offered to X-ray it for him. When the results came back, the doctor didn’t see anything wrong with Eddie’s hip but, because of a bad shadow he saw on the x-ray, informed him that he needed to see a prostate doctor immediately. Then, on his forty-seventh birthday, Eddie received the scary news. He had prostate cancer. “It freaked me out,” Eddie admits in a recent interview with Coping® magazine. “When I found out, it tore me up.”

Making matters worse, three weeks after his diagnosis, his wife filed for divorce. “It’s flat out hard,” Eddie says of divorce. Laughing, he adds, “Divorce is what it is. Sorry, but a good one ain’t a good one.”

His father lost his battle against prostate cancer at the age of fifty-two. Luckily, Eddie’s cancer was caught in the early stages. He underwent robotic surgery to remove the cancerous tumor. The surgery was successful, and Eddie can now say he is cancer-free.

He is extremely thankful for his kids and their strength through the divorce and his cancer. “My kids are heroes,” Eddie boasts. “It’s just been unbelievable how they have stepped up and not even worried about their stuff.” He also shares how grateful he is for his brother, John Michael Montgomery, and for Troy Gentry. “‘T-roy’ and my brother have been there probably since the second that I found out about it,” Eddie says. He has received unbelievable support from his friends, family, and fans.



Montgomery Gentry performing at the Grand Ole Opry.
©2011 Chris Hollo/Hollo Photographics, Inc.

One short month after his surgery, Eddie was already back on stage. His doctor didn’t like the idea of him performing so soon or doing much of anything at that point. Eddie’s first performance after the surgery was at the Grand Ole Opry. A few days later, the duo was traveling overseas for a USO tour to entertain the troops. Eddie believes being on stage again helped him mentally, but physically he may have overdone it. “I wanted to get back to what I missed,” Eddie asserts, “and that was being on stage.”

When asked about the side effects from the surgery, Eddie explains, “You’re worried about a million thoughts. Okay, here I am going through a divorce, and I’m going to be single. And then I’m going, ‘Oh God, what about my sex life?’” He admits he had to deal with incontinence as a side effect as well. Though it has been a slow process, he says with a chuckle, “For me, yep, I’m doing good.”

Eddie has become quite open when it comes to talking about prostate cancer, and he continues to push men to get their prostate checked no matter how young they are. With the number of men who have prostate cancer nowadays, Eddie strongly believes there needs to be more talk about it to create awareness. “I didn’t know how many men – how many actors, celebrities, and young guys have already been going through this. I mean it’s unbelievable. I can’t believe there’s not more talk about it.”

Eddie has always been a man who enjoys living life, and he plans to continue doing just that. “It’s the man upstairs’ choice when you leave this world,” Eddie adds, “and I do want to live every second of it.” After conquering cancer and a divorce, he speaks with a positive attitude and an appreciation for life. As for the future, Eddie says, “I’m just going to live my life having fun.” This will include a new Montgomery Gentry tour beginning this year. “I had it, got rid of it, and I’m ready to go.”

♦ ♦ ♦ ♦ ♦

Visit montgomerygentry.com for Montgomery Gentry’s 2012 tour schedule.

This article was originally published in Coping® with Cancer magazine, January/February 2012.

Easing the Pain of Cancer

by Carrie Aigner, PhD, and Diane Novy, PhD

Have you ever noticed that when you are feeling sad or anxious you attend more to aches and pains in your body? When pain flares, you are more prone to experience negative emotions, such as fear, frustration, anger, and anxiety. Furthermore, when you are in pain, you may feel less like being active and socializing, making you even more susceptible to negative emotions.

Negative emotion can, in turn, lead to greater attention and focus on pain, thereby increasing your pain intensity. You can see how this process can easily turn into a vicious cycle of pain, inactivity, and negative mood.

Not surprisingly, cancer pain is strongly associated with psychological distress, anxiety, and depression. It is estimated that over half of people with cancer experience cancer-related pain, and some cancer survivors may have persistent and ongoing pain because of the disease or its treatment. Even with frontline treatments for cancer pain, including medication prescribed by your doctor, pain may persist. For some people, additional pain management strategies can help reduce pain and improve overall quality of life.

Pain may be a part of your life. However, it doesn’t have to control your life.

Imagery
This technique has considerable evidence to support its use for cancer pain management. Imagery can be used in times of stress, anxiety, and pain. To begin, select a mental image associated with feelings of peacefulness and calmness or with a positive experience. This image will vary by person, but common images include a relaxing beach or a nature scene. Incorporating multiple senses, such as the sounds, smells, and touch sensations associated with this image, can enhance the vividness of the image and the effectiveness of the technique.

When you have chosen an image, practice picturing this image in your mind, focusing on the details of the image. Try to create an environment conducive to relaxation by sitting in a comfortable chair or listening to relaxing music. As you practice this technique, you may notice that you focus less and less on your discomfort.

Active Lifestyle
You may have noticed that activity can lose its appeal when you are in a great deal of pain. You may also fear that doing certain activities will increase your pain, so you modify or stop these activities altogether. At first, this may seem to help. By keeping the area of pain still or stiff, you can prevent or minimize the pain. However, over the long term, these modifications can be harmful, causing muscle weakness, tendon atrophy, and even increased pain.



Dr. Diane Novy

When you are experiencing pain, finding a good balance between activity and rest can help you keep your body fit. A good way to strike this balance is to pace your activities by breaking up large tasks into smaller, more manageable segments. You may also try keeping an activity log to help motivate you into action. Being active can help improve your mood and provide a welcome distraction from the pain.

As always, you should talk to your doctor before making major alterations to your activity level.

For many people with cancer, pain may be a part of your life. However, it doesn’t have to control your life. These pain management strategies can help draw your attention away from the pain, improve your mood, and reduce the impact that pain has on your everyday life. With these tools, you can live a full, active life – despite your pain.

♦ ♦ ♦ ♦ ♦

Dr. Carrie Aigner is a postdoctoral fellow in Psychology at the University of Texas MD Anderson Cancer Center with a combined research-clinical appointment in the departments of Pain Medicine and Behavioral Science. Dr. Diane Novy is a professor in the department of Pain Medicine at the University of Texas MD Anderson Cancer Center.

This article was originally published in Coping® with Cancer magazine, November/December 2011.

Your Flu Questions Answered

 

Living with cancer increases your risk for complications from influenza. If you have cancer now or have had cancer in the past, you are at higher risk for complications from the flu. To help prepare you for the flu this season, here are answers to some of your most important flu-related questions.

What should people with cancer and survivors know about this flu season?
Flu refers to illnesses caused by a number of different influenza viruses. Flu can cause a range of symptoms and effects, from mild to deadly. Some people, including people with cancer and survivors, are more likely to get flu complications.

Symptoms of the flu include fever, cough, sore throat, runny or stuffy nose, body aches, headache, chills, and fatigue. Some people may have vomiting and diarrhea. People also may be infected with the flu and have respiratory symptoms without a fever.

Getting a flu shot as soon as it becomes available each year is the first and most important step in protecting against flu viruses.

Should I get a flu shot?
Yes. People with cancer and survivors are at higher risk for complications from flu, even if they are now cancer-free. People with cancer or a history of cancer should receive the seasonal flu shot, not the nasal spray vaccine. People who live with or care for a person with cancer or a survivor should also be vaccinated against seasonal flu.

Every year, a different flu vaccine is developed to match the constantly changing flu strains that circle the globe. This year’s vaccine is an all-in-one flu shot that protects against the swine flu strain (H1N1) plus two other kinds of influenza. Getting a flu shot as soon as it becomes available each year is the first and most important step in protecting against flu viruses. The vaccination’s protection will last throughout the flu season.

What can I do to help reduce the spread of the flu?
Develop good health habits to stop the spread of germs. Cover your nose and mouth with a tissue when you cough or sneeze, and throw the tissue in the trash after your use it. Wash your hands often with soap and water. If soap and water aren’t available, use an alcohol-based hand sanitizer.

Avoid touching your eyes, nose, or mouth. Germs spread this way. Try to stay at least six feet away from people who appear ill, and if you are sick, keep away from others as much as possible. Follow public health advice regarding school closures, avoiding crowds, and other social distancing measures. Be prepared in case you get sick with a supply of over-the-counter medicines, alcohol-based hand sanitizer, and tissues. Take flu antiviral drugs if your doctor prescribes them.

What should I do if I think I may have the flu?
If you have received cancer treatment such as chemotherapy or radiation therapy within the last month, or have a blood or lymphatic form of cancer, call your doctor immediately if you get flu symptoms or if you have been within six feet of someone known or suspected to have the flu. Your doctor may give you antiviral drugs that stop flu viruses from reproducing in your body and can make your illness milder and make you feel better faster. They may also prevent serious flu complications.

♦ ♦ ♦ ♦ ♦

For the latest influenza news and information, visit flu.gov.

Source: U.S. Centers for Disease Control and Prevention

This article was originally published in Coping® with Cancer magazine, November/December 2011.

10 Gynecologic Cancer Symptoms Women Shouldn’t Ignore

Warning signs that should send women to a doctor

 

Pelvic pain and abnormal bleeding aren’t the only signs of gynecologic cancer. As part of Cervical Health Awareness Month in January, experts at The University of Texas MD Anderson Cancer Center share other symptoms that often are overlooked.

More than 80,000 women in the United States are diagnosed each year with a gynecologic cancer, such as cervical, endometrial (also known as uterine) or ovarian cancer.

Unfortunately, because symptoms for these cancers are often vague, many women mistake them for other less serious conditions, according to Therese Bevers, MD, medical director of MD Anderson’s Cancer Prevention Center. It is important to know exactly what to look for because gynecologic cancers are usually most treatable when found early.

Below are 10 symptoms of cervical and other gynecologic cancers that every woman should watch for. Alert your doctor if these symptoms appear, especially if you’ve already gone through menopause.

1. Swollen leg. Does one leg look or feel swollen for no reason? This may be a sign of cervical cancer. Typically, though, a swollen leg isn’t a sign of cancer unless there’s also pain, discharge or other cervical cancer symptoms.

2. Abnormal vaginal bleeding. More than 90% of women diagnosed with endometrial cancer experience irregular bleeding. Women who’ve already undergone menopause should have any bleeding — including spotting — evaluated. Women who haven’t gone through menopause should see a doctor about bleeding between periods, heavy bleeding or bleeding during sex.

3. Unexplained weight loss. Women who suddenly lose more than 10 pounds without changing diet or exercise habits should see their doctor.

4. Vaginal discharge colored with blood. Bloody, dark or smelly discharge usually signals infection. But sometimes, it’s a sign of cervical or endometrial cancer.

5. Constantly needing bathroom breaks. Constantly need to use the bathroom or feel continuous bladder pressure? This may be a sign of cancer. Take note especially if you also feel full, have abdominal pain and experience bloating.

6. Loss of appetite or constant feeling full. Never hungry anymore? Or constantly full? These appetite changes may be symptoms of ovarian cancer.

7. Pain in the pelvis or abdominal area. Ongoing abdominal pain or discomfort — including gas, indigestion, pressure, bloating and cramps — can signal ovarian cancer. And, constant pelvic pain or pressure can be a sign of endometrial cancer.

8. Belly bloat. Women often feel bloated after eating or drinking a lot, especially during their menstrual cycles. But a woman may have ovarian cancer if she continues feeling bloated for more than two weeks or after her period ends.

9. Constant fatigue. A little rest should typically cure fatigue. But women should see a doctor if fatigue constantly interferes with work or leisure activities.

10. Persistent indigestion or nausea. Feeling queasy for an extended period of time? Occasionally, persistent indigestion or nausea can signal gynecologic cancers, so play it safe and see a doctor.

“Remember, having one or more of these symptoms doesn’t mean you have cancer,” Bevers said. “But if they last two weeks or longer, see your doctor. After all, it’s better to be safe than sorry.”

♦ ♦ ♦ ♦ ♦

For additional tips on women’s health, visit www.mdanderson.org/focused.

Don’t Let Fatigue Get You Down

Tips and Techniques for Managing Cancer-Related Fatigue

 

Fatigue is the most common and distressing symptom experienced by people with cancer. It can be part of the disease process or its treatments, and it can persist after treatments are completed. Cancer invades every part of your life. Similarly, fatigue can cast a shadow over everything you do, feel, and even how you think about yourself. Learning about fatigue, its causes, and ways to potentially lessen its effects can improve your overall quality of life.

Here are simple tips and techniques for managing fatigue that you can discuss with your healthcare providers and your family. Many are low-cost, low-tech solutions. Some are prescription drugs; others just feel good (like massage). One or more of these may be able to help you lessen your fatigue level and help you feel better.

Most Helpful
Clinical studies conducted to date on fatigue indicate that the most helpful way to manage fatigue is to exercise. More than 30 controlled clinical studies show that exercise can be effective in reducing fatigue associated with cancer. Exercise strengthens the body and may help strengthen immunity.

The types of exercise that would be most beneficial vary according to your current lifestyle, the stage of your disease, and the nature of your treatment. Low-impact exercises, such as walking, can help your overall mood and energy level. Resistance exercises with elastic bands may also help you to feel better and increase your energy level. This type of exercise can be done while you are sitting down if you have trouble walking. Ask your doctor what exercises you can do safely without exhausting yourself.

The most helpful way to manage fatigue is to exercise.

Likely to Be Helpful
The following techniques are also likely to be helpful in managing fatigue:

♦ Energy Conservation and Activity Management
Energy conservation is the practice of using peak energy times to do certain tasks, while being careful not to exhaust yourself for the rest of the day. Activity management is a combination of selecting when to do certain tasks, pacing yourself, and determining what you can do versus what you can delegate to others.

♦ Education
Learning about cancer’s effects on the body and how you can alter your self-care may help in coping with fatigue in a more positive way.

♦ Massage and Healing Touch
Massage manipulates the body’s soft tissues. It can be done to particular parts of the body or the whole body. The manipulation can be very gentle, or it can be more forceful, depending on the type of massage. Very vigorous massage, such as deep tissue or Swedish, should be avoided if your platelet count is low. Some massage is done with heated stones. Some cancer treatments can make your skin more sensitive to heat, so you should be very cautious about this type of massage. The objective of massage is to restore function and release tension.

Healing touch is a technique performed by a specially trained practitioner that may or may not involve lightly touching the person. It is said to restore energy fields around the body.

♦ Relaxation Techniques Progressive
relaxation combines breathing techniques, visualization, and body positioning to help ease tension in every part of the body.

♦ Screening for Other Medical Conditions
Many medical conditions besides cancer can contribute to fatigue (for example, undiagnosed hypothyroidism or adrenal insufficiency). Simple blood tests can uncover these problems, and appropriate treatment can help alleviate fatigue caused by the conditions. Ask your physician if you have been screened for hypothyroidism, cardiac and lung problems, imbalances in sex or adrenal hormones, fluid or electrolyte imbalances, anemia, and depression. Sedative effects of some drugs and drug-drug interactions also can worsen fatigue.

♦ Techniques to Improve Sleep Quality
These consist of simple behavior modification practices, such as avoiding caffeine and stimulating activities in the evening, going to bed at the same time every night, avoiding long naps late in the afternoon, and using the bedroom solely for sleep and sexual activities. This can help normalize your internal “sleep clock” and maximize your quality of sleep.

May or May Not Be Helpful
Erythropoietin treatment falls in the category of treatments that may or may not be helpful in managing cancer-related fatigue. It is given to correct anemia, which most people with cancer will have sometime during their illness. Anemia occurs when the amount of red cells in the blood is too low to supply your oxygen needs. Human recombinant erythropoietin can stimulate the bone marrow to make more red blood cells. Having a greater number of circulating red blood cells in the body may help lessen symptoms of fatigue.

This treatment carries with it a risk of hypertension and making your blood clot more easily. It can cause some tumors to grow more rapidly. Talk with your physician to see if erythropoietin might be appropriate for you.

♦ ♦ ♦ ♦ ♦

Reprinted by the permission of the Oncology Nursing Society from www.thecancerjourney.org.

This article was originally published in Coping® with Cancer magazine, November/December 2011.

Diagnosis: Lung Cancer

What Happens Next?

 

You have just been diagnosed with lung cancer. The first thing you must know, and something you should repeat to yourself over and over, is there is reason for hope! Much is being done for people with lung cancer, and new treatments are being developed and tested every day. Of course, you may experience many strong emotions – it is part of the process of dealing with your diagnosis. But a key part of living with lung cancer is to learn the facts, to stay positive, to be hopeful, and to remember that lung cancer can often be treated.

There isn’t one best or easiest way to live with a diagnosis of lung cancer. Here are some suggestions for ways you can live with your diagnosis and treatment.

Get a second opinion. Arm yourself with knowledge of all of your options. If you do not get a recommendation from your doctor for where to get a second opinion, consider going to a National Cancer Institute-designated Comprehensive Cancer Center. These centers are ideally suited to provide you with the treatment you need. The experts you consult may all tell you the same thing, or they may suggest new options or clinical trials you may want to consider. You should start treatment with the confidence that you have made the best decision you can.

Arm yourself with knowledge of all of your options. You should start treatment with the confidence that you have made the best decision you can.

Become your own best advocate. Talk with your doctors and nurses. Ask questions. Ask them to repeat what you don’t understand. Repeat back to them what you think you heard and ask them to confirm that you understood. Be active in your care and choices. Use a notebook to keep track of questions you have and information about your health and disease, such as your latest test results, medical reports, and notes. Bring a family member or friend with you to all appointments so you can make sure they heard the same information you did.

Don’t let anyone steal your hope. There is much that even the experts don’t understand about lung cancer, especially how each person will respond to treatment. Forget or ignore the statistics. They tell you nothing about what is going to happen to you. Find doctors who share your hope for survival and are willing to fight right along with you.

Make healthy lifestyle changes. Life will change after any cancer diagnosis, and living with lung cancer can be difficult. There are things you can do to help you deal with the changes in your life.

• If your energy level is affected, plan rest periods as you need them.
• Know what causes you to become short of breath or experience other symptoms. Walking may be okay, but walking uphill may be too tiring.
• If you are undergoing chemotherapy treatments, ask your doctor when you are likely to have low blood counts and when they are likely to recover. Plan lighter activities on days when your blood counts are lower.

Living with any serious illness causes mental exhaustion. It’s normal to be worried, fearful, sad, or anxious. You may want to ask for counseling or other help to deal with these feelings. You may have trouble sleeping. Ask your doctor for help if you experience long-term sadness or sleeplessness.

Living with any serious illness causes mental exhaustion. It’s normal to be worried, fearful, sad, or anxious.

Take care of yourself. Your body is undergoing a battle. Arm it with what it needs to be successful. Eat well, drink plenty of water, exercise when you are able, and get enough rest, both at night and during the day.

Your cancer or your treatment may affect your ability to be intimate. Talk about this with your partner, and if necessary, your doctor or a counselor. Take time to just be together.

Your Family and Friends
Although you are the one with a diagnosis of lung cancer, your family and other loved ones are experiencing it with you. They are dealing with their own sadness, fears, and worries. One way for them to handle their feelings is to try to take care of you. If possible, allow them to help you. It is part of their healing process as well as yours. When it comes to family and friends, be sure to

• Surround yourself with positive and encouraging people.
• Take someone to doctor visits with you to help listen or take notes.
• Accept offers for help. When people ask, “What can I do?” it is because they truly want to do something. Allow them the pleasure and privilege of helping you. You will be helping them through this hard time too.

For the Young Person with Lung Cancer
Most people with lung cancer are over age 60. However, a large number of young people, even those under 40, are diagnosed with this disease. If you haven’t started or completed your family and it’s important to you, be sure to talk with your doctor before you start treatment about options for preserving your ability to have children in the future.

Your body is undergoing a battle.
Arm it with what it needs to be successful.

Support Groups
Support groups offer a chance to talk with others going through situations similar to yours. Yet many people with lung cancer are not comfortable seeking out these groups. Some people actually feel guilty about a diagnosis of lung cancer: if you have smoked, you may feel that it is your own “fault” that you got lung cancer. These negative feelings make support groups especially important for you. You must recognize that no one deserves lung cancer. Support groups also can help your family and loved ones who are affected by your illness.

You may find that in the beginning you come to a group to seek encouragement and hope but that later you are the one to offer that same encouragement and hope to someone else. Many kinds of support are available.

Ongoing Care
Even if there is no sign of lung cancer after your treatment is completed, the fear of the cancer returning is often on the mind of survivors. You may find yourself dealing with treatment side effects, or you may feel the loss of the attention of your medical team and support groups. This is a time that can be difficult: feelings of depression are not unusual. Many people continue to find comfort from support groups even after their treatment has ended. Also, these groups allow you to share your experiences with those who are facing what you have already gone through, which can be rewarding.

Once your treatment is over, it is also important that you receive regular followup care. Visit your doctor as prescribed to monitor for any return of cancer. The American Society of Clinical Oncology recommends that you have follow-up appointments with your specialist every three months during the first two years after treatment, every six months during years three through five, and yearly after that. You should feel free to schedule appointments more frequently if you are experiencing symptoms that worry you or have other healthcare concerns. Ask your physician what symptoms you should be on the lookout for. Report them promptly should they occur.

♦ ♦ ♦ ♦ ♦

Reprinted with permission from www.nationallungcancerpartnership.org. ©2011 National Lung Cancer Partnership. All Rights Reserved.

This article was originally published in Coping® with Cancer magazine, November/December 2011.

Targeted Therapies

The Future of Cancer Care

by Jeff Boyd, PhD

Today, breast cancer, colon cancer, ovarian cancer, and brain cancer all receive the same standardized therapies, despite the fact that no two tumors, even from the same organ, are truly alike. But this “one size fits all” approach to treatment is about to change.

We are now at an inflection point in cancer medicine. Increasingly over the coming years, genetic profiles of an individual’s tumor will guide targeted therapies that will be both safer and more effective than currently available treatments. In fact, a handful of these new therapies are already available and proving the importance of this new approach to treating cancer.

Cytotoxic Therapies – The Mainstay of Cancer Treatment
The first use of chemotherapy to treat cancer in an adult was accomplished in 1960 using a drug called methotrexate against a tumor of the placenta. Despite initial resistance by the cancer research establishment to what was then considered a radical approach to cancer treatment, the use of cytotoxic chemicals – agents that kill cells – has become the mainstay of cancer therapy over the past 50 years. Many cancers are also treated with cytotoxic radiation therapy, often combined with chemotherapy, to achieve the most effective cancer control.

Rather than just one disease, cancer is an extraordinarily complex set of genetic diseases.

Uncontrolled cell division is the hallmark of cancer, and chemotherapy and radiation are designed to interfere with the cancer cell’s ability to divide. Current treatment strategies for nearly all cancers, except early-stage tumors that may be cured by surgery alone, involve the use of cellular poisons – chemicals, radiation, or both – that act indiscriminately on dividing cells. By causing DNA damage, these agents induce cancer cells to undergo a “programmed” death, or simply cease to divide. The untoward side effects of many cancer treatments (for example, hair loss and gastrointestinal distress) occur because the treatments affect most of the dividing cells in the body, not just the cancer cells.

Targeted Therapy – A New Revolution in Cancer Care
Rather than just one disease, cancer is an extraordinarily complex set of genetic diseases. It takes multiple, acquired genetic alterations to convert a normal cell into a tumor cell, and these changes differ between and among tumor types. There are approximately 22,000 genes in the human genome, all of which are subject to mutation or altered expression levels. Amazingly, thousands of genetic mutations may be involved in the development of a specific cancer. The key to successful cancer treatment is to identify these mutations and understand which are most amenable to therapy.

The revolution leading to the possibility of targeted therapy as a mainstay of cancer treatment has been made possible by major advances in two areas: information and technology. Information has come from the deciphering of the human genome. By determining the exact sequence of all 3.3 billion base pairs of DNA that encode the 22,000 genes in our 23 pairs of chromosomes, it has become theoretically possible to determine every genetic change that has occurred in the transformation of a normal cell into a cancer cell. This is due to technological advances that allow DNA sequencing machines to determine the genetic architecture of an individual cancer.

In order to avoid killing healthy cells along with the cancer cells, we must figure out which genetic alterations and molecular aberrations are present in a specific tumor, and which of these may be susceptible to a particular therapy. Targeted therapeutic agents take aim at a specific genetic or molecular defect known to exist in a given tumor. Typically, these agents are composed of synthetic molecules or natural antibodies that do not have wide-ranging toxic effects on normal cells. They attack the “Achilles’ heel” of the tumor, generating a specific response to the therapy.

Well-established examples include the drug trastuzumab (Herceptin®), which targets an overexpressed gene present in some breast cancers, and imatinib (Gleevec®), which targets an abnormally altered gene in chronic myelogenous leukemia. These therapeutic agents have produced impressive clinical responses with relatively few side effects, compared to standard therapies for these cancers.

Looking to the Future
In the future, cancers will be classified and treated based on their genetic and molecular makeup rather than where they originate in the body. This targeted approach to cancer therapy will result in less toxicity, fewer side effects, and most importantly, more durable remissions for advanced cancers of many types.

While curing cancer is obviously still the long-term goal of the biomedical research community, it is entirely reasonable to expect that in the near future, transforming advanced cancer into a chronic, rather than fatal, disease is possible for many tumor types. It is safe to say that targeted therapy is the most important and promising breakthrough in cancer treatment in the past 50 years.

♦ ♦ ♦ ♦ ♦

Dr. Jeff Boyd is the senior vice president of Molecular Medicine and the executive director of the Cancer Genome Institute at Fox Chase Cancer Center in Philadelphia, PA.

This article was originally published in Coping® with Cancer magazine, November/December 2011.

West Wing's Rob Lowe

This award-winning actor is educating people on the side effects of chemotherapy.

by Julie McKenna

Rob Lowe has teamed up with Amgen to launch By My Side™: Taking Charge of Cancer Treatment, a multi-media education program to raise awareness about infections and other chemotherapy side effects. Already a spokesperson for breast cancer awareness, Rob is now getting the message out about the risk of chemotherapy side effects after his father, Chuck, developed an infection while he was taking chemotherapy for lymphoma. "It was really scary for us," says Rob. "Although chemotherapy was the miracle that ultimately saved my father's life, there was its side effect that we were unprepared for."

The By My Side program offers information about Amgen's Neulasta™ (pegfilgrastim), a prescription medication that boosts the body's own natural infection-fighting white blood cells to help protect people against infections.

After what his father went through, Rob is eager to help get the message out about the side effects of chemotherapy and what people can do about it.

"Infection forced my dad to stop his chemotherapy. When he was told that his treatment had to be stopped, he didn't know it was because of infection. He thought it was because the chemo wasn't working and the cancer was winning," says Rob. "I'm hoping to encourage people, whether by visiting the Web site or by calling the number, to let us send them the By My Side package - it's free. And it's just an amazing source of knowledge for everybody who is going to be going through or who is going through chemo. I know it would have been tremendously valuable to my dad had it been around. And I'm hoping that cancer patients will use it as a tool to really be proactive in their treatment."

Rob Lowe has received an Emmy nomination, two Golden Globe nominations and has won the Screen Actor's Guild's Best Ensemble award two years in a row for the TV show, The West Wing. Rob's enthusiasm as a cancer advocate even came up in a recent episode of The West Wing, where Rob's character, Sam Seaborn, writes an addition to President Bartlett's State of the Union address announcing a goal for the country to cure cancer in the next decade.

After what his father went through, Rob is eager to help get the message out about the side effects of chemotherapy and what people can do about it. "Educate yourself," Rob urges. "When you go see your oncologist, already have your list of questions you want to ask. And do the research before you go. Use By My Side, use the Internet, and if you're not up to it, and frankly there are probably a lot of people who aren't - there were times my dad wasn't - then you've got to lean on your family or your friends."

♦ ♦ ♦ ♦ ♦

By My Side offers free information on the "visible" side effects of chemotherapy, such as nausea and hair loss, the "hid- den" side effects, such as infection and emotional duress, and provides tips on preventing or managing them. The information is available by visiting www.ByMySide.com.

This article was originally published in Coping® with Cancer magazine, July/August 2002.

January is Cervical Health Awareness Month

 

Each January is recognized as Cervical Health Awareness Month. Each year in the U.S. approximately 12,000 women are diagnosed with cervical cancer. This doesn’t take into account the many thousands of women who have cervical abnormalities and abnormal Pap tests for reasons other than cancer, but who still undergo expensive and inconvenient follow-up exams and treatments. The true tragedy of the disease is that cervical cancer screening tests and vaccines exist that can prevent virtually every case.

Cervical cancer is caused by specific types of the Human Papillomavirus (HPV), a common infection that almost everyone who is sexually active will have at some point. There are vaccines that block the types of HPV most often found with cervical diseases, and screening tests (such as Pap tests and HPV tests) that can identify women most at risk. Cervical cancer can be prevented!

• Vaccinate early (females and males ages 9-26 are eligible)
• Pap test regularly (beginning at age 21)
• HPV test when recommended

The true tragedy of the disease is that cervical cancer screening tests and vaccines exist that can prevent virtually every case.

In both the U.S. and around the world, the disease disproportionately impacts poor women. ASHA President and CEO Lynn B. Barclay says that in addition to not having access to health care, women often lack awareness about cervical cancer. “Science has put us in a remarkable position to protect women from cervical cancer, but technology is only half the battle,” Barclay says. “It’s imperative we continue efforts that not only promote greater access to health care, but that we also inform women about cervical cancer and the marvelous means we now have to prevent this disease.”

2012 will see ASHA/NCCC focus strongly on increasing uptake of cervical cancer vaccines. Fewer than half of girls and young women who are eligible for these vaccines have completed the three-dose series, so increasing vaccine uptake is a priority for us. Barclay says a key to getting more “needles in arms” is to reach out to healthcare providers in addition to the general public: Especially for parents, having the family doctor or nurse endorse a vaccine is often crucial. With this in mind, we’re developing additional cervical cancer information and counseling tools designed specifically for front-line healthcare providers.

ASHA/NCCC address the challenges of cervical cancer prevention by offering numerous programs that include national advocacy, publications, and interactive services that provide education and support for patients, families, and health professionals.

For a list of free/low cost pap testing locations in the United States, see www.nccc-online.org/low_cost.php.

♦ ♦ ♦ ♦ ♦

For more information, visit online at www.ASHAstd.org and www.nccc-online.org.

The Trouble with Hope

by John Ptacek

I had a strained relationship with hope before my wife was diagnosed with cancer. To me, hope was a high waiting for a low, a fix with a nasty flipside.

Far from the precious entity exalted by legions of poets and philosophers, hope was just another coordinate on the pain and pleasure cycle, existing in infinite balance with its opposite. In the same way that happiness alternates with sadness, or desire with loss, hope alternates with fear. One requires that the other exist.

Hope was for suckers, and I was no sucker.

Or so I reasoned. The times I didn’t need hope, that is. But when life would clobber me over the head with misfortune, there I was, clinging to hope like a dear, misunderstood friend. Since my wife’s diagnosis, however, my relationship with hope is no longer strained. It’s been severed completely. I’ve abandoned hope, and in the process have met a new friend: peace.

Surrender meant discarding the idea that life is always supposed to be wonderful; it’s just supposed to be life.

To abandon hope is to trample the plotline of feelgood movies, to renounce the rhetoric of sweating preachers, and to earn puzzled looks from hopers everywhere. Hope soothes and inspires. It builds churches and sells books. Hope is widely thought to be the last coin in our pocket, the one thing we can never afford to lose.

But what is hope, exactly? What does it look like away from the flickering glow of votive candles? Isn’t hope just wishful thinking? Isn’t it just slapping a happy ending on an unhappy beginning?

We want to be happy all the time, and why not? It beats sad, lonely, and a host of other unpleasant but inevitable human conditions. When we’re not happy, we hope. We paint a bright future with our thoughts and wait for it to materialize. However rickety, this logic makes just enough sense to ease a frightened mind.

Time spent hoping for happier days is time spent turning away from life in its infinite poses of glory.

Implicit in hopeful thinking is the mistaken notion that we are separate entities existing outside the flow of an exquisitely connected universe, that we are as in control of our destinies as we are our individual retirement accounts. Hope is our silent prayer that misfortune is meant for one of the other six and a half billion people in the world, but not us.

In small doses, hope is not toxic. It only nips or stings. When our home team loses, when no one asks us to dance, when we tear up lottery tickets, our hopes are dashed and we’re left to survey the space between our expectations and reality.

That space grows into an abyss for those attempting to stall reality with hopeful thoughts during times of peril. Thoughts eventually dissolve, while reality stands pat. We blink, and it’s still there. Rays of hope meant to banish our darkest fears in the end only illuminate them, and we crumple into a state of surrender. At least, I did.

Surrender was where I stumbled into peace. I didn’t give up on life; I just stopped trying to outwit it. Surrender meant discarding the idea that life is always supposed to be wonderful; it’s just supposed to be life.

Time spent hoping for happier days is time spent turning away from life in its infinite poses of glory: the elegant curve of my wife’s newly hairless head, the game smile poking through her fatigued expression, the mountain of getwell cards rising above a sea of orange pill bottles. Beauty borne from tragedy acquires a sacred dimension that can only be witnessed by a surrendered mind, a mind that isn’t chasing after the next “happy face” moment. To picture my wife with hair again, to imagine her digging in the garden or strutting back off to work, is to add time where none is needed, to ignore the beauty right under my nose, and to allow futile hope to intrude on an otherwise peaceful day.

♦ ♦ ♦ ♦ ♦

John Ptacek writes for a living. His wife, Kitty, was diagnosed with ovarian cancer more than four years ago. They live in Whitefish Bay, WI. John’s essays appear on his website, On Second Thought, at johnptacek.com.

This article was originally published in Coping® with Cancer magazine, November/December 2011.

Talking to Your Doctor About Cancer Care

 

Talking with doctors about cancer and cancer treatments can feel like learning a new language, and people facing cancer often need help to understand their treatment options and the risks and benefits of each choice. “People are making life and death decisions that may affect their survival, and they need to know what they’re getting themselves into. Cancer treatments and tests can be serious. Patients need to know what kind of side effects they might experience as a result of the treatment they undergo,” says Angela Fagerlin, PhD, associate professor of internal medicine at the University of Michigan Medical School and a University of Michigan Comprehensive Cancer Center researcher.

Here are 10 things you can do to become fluent in the language of cancer care and better understand your options.

1 Insist on plain language.
If you don’t understand something your doctor says, ask him or her to explain it better. “Doctors don’t know when patients don’t understand them. They want patients to stop them and ask questions,” says Dr. Fagerlin.

2 Focus on the absolute risk.
The most important statistic to consider is the chance of something happening to you. “It’s important that patients and doctors know how to communicate these numbers, and patients need to have the courage to ask their doctor to present it so they can understand,” Dr. Fagerlin says.

Sometimes, the effect of cancer treatments is described using language like “this drug will cut your risk in half.” But such relative risk statements don’t tell you anything about how likely this is. Research has shown that using relative risk makes both people with cancer and doctors more likely to favor a treatment, because they believe it to be more beneficial than it actually may be.

Don’t get overwhelmed by too much information. Ask your doctor to only discuss the options and facts most relevant for you.

If, instead, your doctor told you that “the drug will lower your risk of cancer from four percent to two percent,” you would know the exact benefit you would get from taking the drug. Dr. Fagerlin suggests asking doctors for this absolute risk information for a truer picture.

3 Visualize your risk.
Instead of just thinking about risk numbers, try drawing out 100 boxes and coloring in one box for each percentage point of risk. This kind of visual representation can help you understand the meaning behind the numbers.

4 Consider risk as a frequency rather than a percentage.
What does “60 percent of men who have a radical prostatectomy will experience impotence” mean? Imagine a roomful of 100 people – 60 of them will have this side effect and 40 will not. Thinking of risk in terms of groups of people can help make statistics easier to understand.

5 Focus on the additional risk.
You may be told the risk of a certain side effect occurring is seven percent. But if you didn’t take the drug, is there a chance you’d experience the side effect anyway? Ask what the additional or incremental risk of a treatment is. “You want to make sure the risk number you’re being presented is the risk due to the treatment and not a risk you would face no matter what,” Dr. Fagerlin says.

6 The order of information matters.
Studies have shown that you’re most likely to remember the last thing you hear. When making a treatment decision, don’t forget to consider all of the information and statistics you’ve learned.

7 Write it down.
You may be presented with a lot of information. At the end of the discussion, ask your doctor if a written summary of the risks and benefits is available. Or ask him or her to help you summarize all the information in writing.

8 Don’t get hung up on averages.
Some studies have found that learning the average risk of a disease doesn’t help people with cancer make decisions about what’s best for them. Your risk is what matters – not anyone else’s. Focus on the information that applies specifically to you.

9 Less may be more.
Don’t get overwhelmed by too much information. In some cases, there may be many different treatment options, but only a few may be relevant to you. Ask your doctor to only discuss the options and facts most relevant for you.

10 Consider your risk over time.
Your risk may change over time. “What seems like a small risk over the next year or two may look a lot larger when considered over your lifetime,” says Brian Zikmund-Fisher, PhD, assistant professor of health behavior and health education at the University of Michigan School of Public Health.

If you’re told the 5-year risk of your cancer returning after a certain treatment, ask what the 10-year or 20-year risk is. This data might not always be available, but you should always be aware of the time frame involved.

♦ ♦ ♦ ♦ ♦

Source: University of Michigan Comprehensive Cancer Center

This article was originally published in Coping® with Cancer magazine, November/December 2011.

When Life Hurts, Writing Helps

by Sharon A. Bray, EDD

“We’ll write for twenty minutes,” the workshop leader said. She passed a basket around the room, filled with folded papers, a single line of poetry printed on each. “Choose one,” she instructed. “Whatever words you read will be your prompt.”

I’d come to the workshop after completing radiation treatment for earlystage breast cancer two weeks earlier. Despite an intensive week of writing, I had avoided any mention of cancer. To write about it was an admission of vulnerability. Denial was a comfortable overcoat, and I had no desire to discard it.

My fingers hovered over the basket. I reached in, fished out a paper, and read the words on it: The hospital corridor was dimly lit. I dutifully opened my notebook and stared at the blank page. Mixed emotions bubbled up behind my composed exterior. I slowly copied the words onto the page, stalling. Suddenly, the next sentence formed in my head. Words pushed and shoved about my brain in a race for the page. I wrote quickly, describing the agony of the daily wait in the radiology department and the tremor of anxiety as the technician summoned me for treatment. Ms. Bray? This way please.

Writing offers a refuge, the safety to express our shock and confusion and the feelings we find so difficult to say aloud.

The instructor called time. I stopped, flushed and breathless, but feeling lighter, as if a weight had been lifted from my shoulders. In the weeks afterward, I continued to write, filling one journal, then another, describing the moment I heard the “C” word, my fears, the cacophony of confusing emotions. The fog that had enveloped me in the preceding weeks began to clear. I felt more like myself. When I stumbled across the research on writing and health a few weeks later, I smiled. It confirmed what I had experienced. When life hurts, writing helps.

Writing offers a refuge, the safety to express our shock and confusion and the feelings we find so difficult to say aloud. Translating emotions into words makes them less overwhelming. We begin to understand them. Novelist and cancer survivor Alice Hoffman, in a New York Times article in 2000, described the importance of writing during cancer: “What I was looking for during 10 months of chemotherapy and radiation was a way to make sense out of sorrow and loss.”

Alice Hoffman expressed what poets and novelists have always acknowledged. Writing is a way of healing. “Give sorrow words,” William Shakespeare wrote in Macbeth. “The grief that does not speak / Whispers the o’er fraught heart, and bids it break.” Our great writers also implicitly understood what research now confirms: the most beneficial kind of writing tells a story. “When we begin to see our suffering as a story,” Anaïs Nin wrote in her famous diaries, “we are saved.”

Stories are uniquely human. They help us make sense of life. The myths and legends told by the ancients as they gathered around campfires helped them to make sense of the world, to find reasons for things they did not understand. So do our stories of cancer. “Stories,” Anatole Broyard wrote in Intoxicated by My Illness, “are antibodies against illness and pain.” Writing and telling our stories eases the isolation of cancer and reminds us we are not alone.

Getting Started

First, find a quiet time to write. Set a timer for 10 minutes. Write until the time is up. Here are some prompts to get you started:
⇒ Begin with, “When the doctor said, ‘cancer,’ I … ”
⇒ Write about hair – having it and losing it.
⇒ Write a letter to your body. One cancer survivor I know wrote a love letter to her missing lung.
⇒ Imagine cancer as a character. Talk back to it.
⇒ Write about fear. What keeps you awake at night?
⇒ What are you grateful for?

Through writing, the detrimental effects of stress, anxiety, and other negative emotions are weakened. Writing stories or poems out of your cancer experience helps you make sense of your illness, find new meaning in your life, and reclaim your voice, which is sometimes silenced in the wake of a cancer diagnosis.

Your stories matter. Whether you write in a journal, on a computer, or on an online blog, your stories are testimony to the uniqueness of your life and your experience. “This is my life,” our stories say. “This happened to me. This matters.”

Why not give writing a try? It can help you navigate the rough waters of cancer treatment and recovery.

Write your way into healing. Write your way through cancer.

♦ ♦ ♦ ♦ ♦

Dr. Sharon Bray is the author of two books on writing during cancer. Her blog, WritingThroughCancer.com, features weekly writing prompts for men and women living with cancer.

Everyone has a unique story to share about their cancer experience. Visit copingmag.com/share_your_story to send us your stories and poems.

This article was originally published in Coping® with Cancer magazine, November/December 2011.

Seven Tips to Successfully Quit Smoking in the New Year

 

This holiday season, countless Americans will make the New Year’s resolution to quit smoking in 2012. While quitting smoking is extremely difficult—six out of 10 smokers require multiple quit attempts to stop smoking—preparing a quit-smoking plan can greatly improve a person's chance for success. The following are proven tips and resources from the American Lung Association that have helped thousands of people give up smoking for good:

1. Talk to your doctor or pharmacist about the various types of treatments and different over-the-counter and prescription medications that are available to help you quit smoking.
2. Look into the different options available to help smokers quit. Visit www.lung.org/stop-smoking or call 1-800-LUNG-USA (1-800-586-4872) for suggestions.
3. Take time to plan. Pick your quit date a few weeks ahead of time and mark it on the calendar. If you can, pick a day when life's extra stresses are not at their peak, such as after the holidays. Mark a day on the calendar and stick to it. As your quit day approaches, gather the medications and tools you need and map out how you are going to handle the situations that make you want to smoke.
4. Get some exercise every day. Walking is a great way to reduce the stress of quitting. Exercise is proven to not only combat weight gain but also to improve mood and energy levels.
5. Eat a balanced diet, drink lots of water and get plenty of sleep.
6. Ask family, friends and co-workers for their help and support. Having someone to take a walk with or just listen can give a needed boost.
7. You don't have to quit alone. Help is available online and in your community. Consider joining a stop-smoking program like Freedom From Smoking® (www.ffsonline.org) from the American Lung Association.

"Research shows that people who develop a support system and use programs like Freedom From Smoking® Online have greater success in quitting for good."

“Quitting smoking is the single most important step smokers can take to improve their health,” said Norman H. Edelman, M.D., chief medical officer of the American Lung Association. “The start of a fresh New Year is a great time for smokers to implement their plan to quit smoking—and reap the health and financial benefits of a smokefree lifestyle.”

Helping Americans quit smoking remains a public health priority for the American Lung Association. Its Freedom From Smoking® group clinic program—which began in 1981 and includes a comprehensive variety of evidence-based cessation techniques—has helped hundreds of thousands of smokers quit. The American Lung Association more recently introduced Freedom From Smoking® Online, a highly successful, self-paced online adaptation of the group clinic that is available 24 hours a day.

“Smokers don’t have to go it alone when they attempt to quit smoking,” added Dr. Edelman. “In fact, research shows that people who develop a support system and use programs like Freedom From Smoking® Online have greater success in quitting for good, compared to those who try to quit “cold turkey.”

♦ ♦ ♦ ♦ ♦

Source: American Lung Association, www.lungusa.org

Educational Resources to Prevent Infections in Cancer Patients

Patient website and infection control plan developed for outpatient oncology clinics will help prevent infections and hospitalizations in a vulnerable population

 

The Centers for Disease Control and Prevention (CDC) is introducing two new educational resources as part of the Preventing Infections in Cancer Patients program. The comprehensive program, first announced in 2009, provides information, action steps and tools for patients, their caregivers and their healthcare providers to reduce their risk of developing potentially life-threatening infections during chemotherapy treatment. The new resources include an interactive website for cancer patients and caregivers, and a Basic Infection Control and Prevention Plan for Outpatient Oncology Settings.

"Some chemotherapy treatments cause low white blood cell counts and place patients at risk for developing serious infections," said Lisa Richardson, MD, MPH, an oncologist and associate director for science in CDC's Division of Cancer Prevention and Control. "This new easy-to-use educational program is an example of how CDC works to help people live longer, stronger, and safer lives."

Preventing Infections in Cancer Patients was developed by experts from CDC's Division of Cancer Prevention and Control and CDC's Division of Healthcare Quality Promotion in collaboration with scientists in the fields of oncology and infection control. The program was made possible by a grant from Amgen to the CDC Foundation.

The interactive website, 3 Steps Towards Preventing Infections During Cancer Treatment available online at www.preventcancerinfections.org, helps cancer patients assess their risk for developing a low white blood cell count, a condition called neutropenia, during chemotherapy. Neutropenia is a common and potentially dangerous side effect in patients receiving strong chemotherapy treatments that can lead to a higher risk of infection. Cancer patients and caregivers complete a short online questionnaire about their risk factors and receive downloadable information about how to help lower their risk for infection and keep themselves healthy while receiving chemotherapy.

"We hope to empower patients, their caregivers and healthcare providers to take necessary steps to prevent infection."

Since most cancer patients receive chemotherapy and treatment in outpatient settings (physicians' offices), CDC experts identified key policies and procedures in CDC's existing guidelines for infection control in outpatient settings and customized them to meet the specific needs of outpatient oncology facilities. The Basic Infection Control and Prevention Plan for Outpatient Oncology Settings provides specific guidelines on injection safety, hand hygiene, environmental disinfection, and other related areas. The plan outlines how the guidelines should be applied in outpatient settings where cancer patients receive chemotherapy and ongoing treatment. The plan and an associated checklist are accessible online at www.cdc.gov/cancer/preventinfections.

"Infection in cancer patients undergoing chemotherapy is associated with increased morbidity and mortality," said Sean Harper, MD, chief medical officer and senior vice president of Global Development at Amgen. "By bringing together experts in oncology and infection control to raise awareness of this public health concern, we hope to empower patients, their caregivers and healthcare providers to take necessary steps to prevent infection."

As part of the comprehensive program, CDC produced a collection of posters, patient brochures, and a fact sheet. Additionally, CDC is reaching out to professional physician and patient advocacy organizations to help raise awareness of this serious health concern and the available resources. The educational materials are available online at www.cdc.gov/cancer/preventinfections.

The program is part of a larger portfolio of partnerships developed through the CDC Foundation to support CDC's work 24/7 to protect people, save lives and save money through prevention. Learn more about CDC at www.cdc.gov.

♦ ♦ ♦ ♦ ♦

About the CDC Foundation
Established by Congress, the CDC Foundation helps the Centers for Disease Control and Prevention do more, faster, by forging effective partnerships between CDC and corporations, foundations and individuals to fight threats to health and safety. The CDC Foundation manages approximately 200 public health programs in the United States and in countries around the world. For more information, please visit www.cdcfoundation.org.

About Amgen
Amgen discovers, develops, manufactures and delivers innovative human therapeutics. A biotechnology pioneer since 1980, Amgen was one of the first companies to realize the new science's promise by bringing safe and effective medicines from lab, to manufacturing plant, to patient. Amgen therapeutics have changed the practice of medicine, helping millions of people around the world in the fight against cancer, kidney disease, rheumatoid arthritis, bone disease and other serious illnesses. With a deep and broad pipeline of potential new medicines, Amgen remains committed to advancing science to dramatically improve people's lives. To learn more about our pioneering science and our vital medicines, visit www.amgen.com.

Adopting a Healthy Lifestyle after Cancer

by Deborah K. Mayer, PhD, RN, AOCN, FAAN

I have been an oncology nurse for over 30 years but only joined the “club no one wants to be a member of” in 2007. So I have a view from both sides of being care provider and recipient. Much of my career has focused on people newly diagnosed with cancer who are facing treatment. I soon began to realize that was just the beginning of life as a cancer survivor.

The Institute of Medicine’s seminal 2005 report From Cancer Patient to Cancer Survivor: Lost in Transition helped articulate what many of us were observing, namely that we did a poor job of helping people integrate their cancer experience, transition into their life after cancer, and answer the question “now what?” Moreover, many survivorship programs and activities appear to be targeted to survivors who no longer have signs of their cancer. The definition of a cancer survivor is anyone living with a history of cancer – from the moment of diagnosis through the remainder of life. That applies to people living with active disease.

It can take about a year for cancer survivors to absorb and integrate the diagnosis and initial treatment into who they are and what they do. For some, it is sooner; for others, it takes more time. But few escape the impact of a cancer diagnosis.

While it may be easier said than done, adopting these healthy behaviors may make a big difference in your health.

After my own diagnosis, I asked myself, Am I living the life I want to be leading? Although the answer was mostly yes, some areas needed attention. For starters, I had to get rid of sources of stress in my life. This meant moving from Boston, where I had a daily twohour commute, to North Carolina, where my commute lasts only 10 minutes. I also started paying more attention to how physically active I was and to what I was eating and drinking. While I believed I was living a fairly healthy lifestyle, there was room for improvement.

My research explores the health behaviors of cancer survivors. A number of current studies are geared toward increasing the physical activity of survivors and promoting a diet rich in fruits and vegetables. While it may be easier said than done, adopting these healthy behaviors may make a big difference in your health, including your risk of cancer recurrence, heart disease, and diabetes.

So how do you adopt a healthy lifestyle? First, if you smoke – quit. Numerous resources, such as SmokeFree.gov, are available to help you (and your family) stop smoking.

If you are not fitting in at least 150 minutes of physical activity a week, get moving. To get started, contact your local YMCA; many offer fitness programs specifically tailored to cancer survivors. If you don’t have a program near you, start walking. Brisk walking has been shown to be a good form of exercise for cancer survivors. Find a friend to walk with you. You’re more likely to stick with a fitness program when you have an exercise partner.

Watch what you’re eating and make some changes, if needed. Work with your doctor or a dietitian to develop a healthy eating plan that works for you.

Pay attention to your overall health. Visit your dentist twice a year for regular cleanings. See your primary care provider for an annual check-up and to get your seasonal flu shot. Take care of any other conditions you may have in addition to your cancer.

Finally, find meaningful things to add joy to your life. After all, it’s important to make the life that is saved by cancer treatment worth living.

♦ ♦ ♦ ♦ ♦

Dr. Deborah Mayer is an associate professor in the School of Nursing at the University of North Carolina at Chapel Hill. She is also the editor for the Oncology Nursing Society’s Clinical Journal of Oncology Nursing.

Talk with your doctor about ways you can lead a healthier lifestyle and for more information on local resources.

This article was originally published in Coping® with Cancer magazine, November/December 2011.

The Oral Cancer Foundation

 

The Oral Cancer Foundation is a national nonprofit organization designed for advocacy and service, created to promote change and save lives through prevention, education, research, and patient support. Approximately 37,000 people in the U.S. will be diagnosed with oral cancer this year. At the forefront of our agenda educating the public about the risk factors, signs, and symptoms of oral cancer and the need to undergo an annual oral cancer screening, combined with reaching out to the dental and medical communities to provide this service as a matter of routine practice.

The Oral Cancer Foundation represents the hope that those who face oral cancer will be supported and that oral cancer will one day be eliminated.

Oral cancer is on the rise in the U.S. for the fifth year in a row. The HPV-16 virus, which has historically caused the vast majority of cervical cancers, has become the leading cause of oral cancer. Tobacco and alcohol use are also risk factors associated with this disease. More and more young, healthy, non-smoking individuals are being diagnosed with this disease due to the HPV connection. The scientific community is beginning to use the word epidemic when describing this situation.

The Oral Cancer Foundation operates a survivor support forum through our website, oralcancer.org. The forum is a place where people with oral cancer, friends and family members who are supporting those with cancer, caregivers, and even interested members of the public can share their experiences and ideas, ask questions, and find inspiration from those who have traveled this path before them. It is designed to facilitate communication among those faced with oral cancer and provide a “human” component to dealing with the disease.

The Oral Cancer Foundation is not a giant entity. It is a composite of many caring people, heavily dependent on volunteers. The Oral Cancer Foundation represents the hope that those who face oral cancer will be supported and that oral cancer will one day be eliminated.

♦ ♦ ♦ ♦ ♦

To learn more about the Oral Cancer Foundation, visit oralcancer.org.

This article was originally published in Coping® with Cancer magazine, November/December 2011.

Delivering Hope

One Family’s Journey through Surrogacy after Cancer

by Pamela MacPhee

My cousin, Henry, and his wife, Lauren, are lucky. Diagnosed with cancer at 29, Lauren found a skilled oncologist who not only prescribed surgery and radiation treatment that saved her life, but also suggested she submit to an egg-retrieval procedure before treatment to preserve her fertility options. Research shows that the majority of cancer survivors in their reproductive years are not counseled about preserving their fertility, and few are referred to a fertility specialist to help them assess those options and take action before cancer treatment begins. That is a travesty.

Lauren and Henry had just begun flirting with the idea of starting a family when she was diagnosed with cervical cancer. And while treatment saved her life, it left her unable to produce healthy eggs or carry a baby. When she found out she had cancer, Lauren was understandably consumed with living, not with starting a family. Without her oncologist’s encouragement and referral, she never would have pursued harvesting her eggs and banking embryos. It was only through the wonders of medical science, in vitro fertilization, and surrogacy that two years after her diagnosis she was able to hold a beautiful baby girl in her arms.

I offered to be a surrogate for my cousin in an attempt to give them something hopeful to look forward to after the fear and devastation of the cancer diagnosis and the rigors of treatment. I surprised them with my offer to carry their baby on Christmas Day while Lauren was still in the midst of radiation treatment, and before they had even seriously considered the possibility of surrogacy. In retrospect, my offer was premature, but I wanted so badly to make everything better for them, to be their hero and help them realize their dream of a family.

While having a baby through surrogacy was not the path my cousin and his wife had envisioned, it became a beautiful journey we took together.

While having a baby through surrogacy was not the path my cousin and his wife had envisioned, and Lauren still had to mourn the loss of being able to carry a child herself, it became a beautiful journey we took together. We shared many intimate moments – from the baby’s first heartbeat, to the ultrasound that revealed a healthy girl, to the day when we all welcomed her into the world.

Lauren told me later that pursuing surrogacy allowed her to get unstuck from the fear and paralysis of having faced death, to take those steps forward and start living again. The excitement of the pregnancy and the birth of baby Hope healed a lot of hurt, grief, and fear that had been the reality for Henry, Lauren, and their families. For me, it was the most fulfilling experience of my life to be able to give hope, to realize my cousin’s dream and my promise to deliver them a family. This journey touched all of us deeply.

None of it would have been possible without the foresight of an astute and compassionate oncologist who gave Henry and Lauren the opportunity to consider their options. All cancer survivors should be given the same opportunity so they may be able to realize the dream of a family after cancer. That’s why I am passionate about spreading the word to survivors that you can have that conversation with your doctor about fertility before it is too late.

My husband and I have three children of our own, and I cannot imagine life without them. They make me laugh every day, give me a sense of purpose, and brighten the world around them. And every time I see baby Hope, I am thrilled to know that I helped bring her into the world, that I helped to give that kind of joy to her parents. I am grateful to the oncologist who made it all possible.

My hope is for all cancer survivors to pursue their own joy, their own dreams. And if it is your dream to know the wonders of being a parent, please talk to your doctor.

♦ ♦ ♦ ♦ ♦

Pamela MacPhee graduated from Stanford University in 1986. She loves hiking local trails, and prefers to see the glass as half-full. She is the author of Delivering Hope: The Extraordinary Journey of a Surrogate Mom, available at deliveringhopebook.com.

For more information and resources on preserving your fertility after a cancer diagnosis, visit oncofertility.northwestern.edu and fertilehope.org.

This article was originally published in Coping® with Cancer magazine, November/December 2011.

The Wrestler

by Renee Gurley

Jon Veitch ended his freshman wrestling season with a dismal record of no wins; he had tasted defeat and refused to take another bite.

During the summer of 1979, Jon spent every moment training and studying every aspect of the sport. He says, “It was funny, but the more I learned, the more I saw the key to wrestling was not resisting the opponent, but to use the opponent’s own force to bring them to the mat.”

With this knowledge in hand, Jon showed them all. The next three wrestling seasons, Jon went virtually undefeated, and he was invited to be part of U.S. Wrestling Team.

Jon’s future was bright. But at 22, a new opponent introduced itself. The opponent’s name? Brain Cancer. Astrocytoma to be exact, a cancer that often carries with it the nickname Terminal. Jon was left on the mat facing his mortality, an interesting face to look into when you are only 22. What did he do?

“Twenty-four years ago, I was told my condition had a name, and that name was Terminal. Today, I scratch my head and wonder what they meant by that word."

He answers, “I focused on what I had learned. Not to resist it, but trust that the opponent’s force would bring it to the mat.” Jon then successfully completed his first craniotomy followed by state-of-the art radiation therapy.

His focus now turned to starting a family, and his first daughter was born in 2000. “I cannot tell you what this meant to me with the walk that I had been given,” he says with tears in his eyes. When his daughter was 18 months old, the opponent appeared again. It had changed its name from Astrocytoma to Stage III Oligodendroglioma. “I was sitting alone in my hospital room, and this was the most scared I had ever been of my cancer,” Jon says. “I picked up a Bible that was sitting on a table, and at a loss, I opened to see what the Good Book said. The book opened to the 23rd Psalm, which states ‘Yea, though I walk through the valley of the shadow of death, I will fear no evil: For thou art with me.’ I knew at that moment that I was not alone in this battle, and if I just turned my fear over, and focused on my mantra about letting the opponent’s force defeat itself, I was going to be okay.”

Again, Jon was given reprieve with another brain surgery followed by proton therapy.

Ten years and five brain surgeries later, Jon is still going strong. He draws; he works; he raises his daughter; he loves; he laughs; he cries; he believes. While he does this, research continues to produce new treatments.

“Twenty-four years ago, I was told my condition had a name, and that name was Terminal. Today, I scratch my head and wonder what they meant by that word. Under the shadow of terminal, I have lived such a wonderfully rich life.”

♦ ♦ ♦ ♦ ♦

Jon Veitch is a 24-year brain cancer survivor. He lives in Riverside, CA, and works as a hairdresser. For more about Jon, visit www.jonveitch.com.

This article was originally published in Coping® with Cancer magazine, November/December 2011.

Live in the Moment

by Dave Balch

Dealing with cancer is not just about cancer; it’s about life with cancer. It’s about all of the stresses, joys, and responsibilities you already had in your life, in addition to the new stresses and responsibilities that come with serious illness. It’s easy to get bogged down.

Our situation was no different. When my wife was diagnosed, I decided that it was her job to get better and it was my job to do everything else. “Everything else” in this case meant doing all of her normal chores when she was unable to, plus scheduling the medical appointments, going to those appointments and doing most of the driving, buying the food, making the food, filling and refilling the prescriptions, and on and on; all of this in addition to my regular household chores and, incidentally, making a living.

I found myself worrying needlessly about things that might never happen, and I soon realized the importance of living in the moment.

Due to the stress and overwhelm, I found myself worrying needlessly about things that might never happen, and I soon realized the importance of living in the moment.

In any situation like this, there will be things you can control and things you cannot control. Try to spend your energy on those things you can control. It’s a skill that must be learned and practiced, but when you can effectively concentrate your energies on the things that will produce results, there will be a noticeable difference in your stress level.

Here’s a perfect example. It was in July when we learned that my wife’s treatment schedule would play out such that radiation treatments would be every day, five days a week, for six weeks beginning in December. We live in the mountains of Southern California, and we would have to drive to the city for each treatment. December and January weather can make for difficult driving, and I started to think of the possibilities: fog, snow, mud, rocks … What would happen to her if she couldn’t get down the mountain and missed one or more treatments?

I was working myself into a frenzy when I suddenly realized that I couldn’t do anything about this potential situation. I couldn’t adjust the timing of the radiation, and I obviously wouldn’t be able to control the weather. After all, the weather may be perfectly fine! I was simply going to have to put it out of my mind and let whatever was going to happen, happen.

Here’s a phrase that will help to remind you of this basic principle: “Don’t go there ’til you get there.” There was no sense in worrying about this situation in advance, and I could spend that same energy on something that would make a difference in her condition, comfort, or treatment.

Don’t go there ’til you get there. Easy to say. Hard to do. But, oh, so very important.

♦ ♦ ♦ ♦ ♦

Dave Balch founded The Patient/Partner Project and CopingUniversity.com, both of which are focused on helping patients and partners deal with their challenges. You can contact Dave toll-free at 1-8-MORAL SUPPORT (1-866-725-7877).

Visit ThePatientPartnerProject.org for free Internet resources, including online progress reporting and a free email mini-course on “The Six ‘L’s’ of Caring and Coping.” Visit CopingUniversity.com for hours of free audio programs with world-class experts who offer fascinating insights and ideas on coping strategies.

This article was originally published in Coping® with Cancer magazine, November/December 2011.

What Happens Once CML Treatment Begins?

Answers from the NCCN Guidelines for Patients™

 

Testing Your Response to Treatment
To assess your response to treatment for chronic myelogenous leukemia, you will need to undergo blood and marrow tests before and during treatment. These tests include complete blood count (CBC), cytogenetic analysis, and quantitative polymerase chain reaction (QPCR). How often you will need these tests depends on the time since your treatment started and your previous test results. There are three different types of response to medications:

• A hematologic response is a return of blood cells to normal levels and a decrease of blast cells and other immature cells in peripheral blood.
• A cytogenetic response is a decrease in the number of Philadelphia chromosomes during metaphase cell division as measured by bone marrow aspirate and cytogenetic tests.
• A molecular response is a decrease in the amount of BCR-ABL messenger RNA (mRNA) as measured by QPCR.

If you are not having an adequate response to treatment, you will be tested to see if your body is resistant to the medication. You may have primary resistance. Primary resistance to imatinib is not fully understood. It may be due to low levels of imatinib in the blood, but the NCCN Guidelines Panel does not recommend routine blood testing since there are no data to support that changing treatment based on plasma imatinib levels will improve results. Primary resistance may also be caused by abnormal activity of drug transporters that are lowering the level of imatinib. The overactivity of the multidrug resistance gene (MDR1) and underactivity of human organic cation transporter-1 (hOCT1 ) may be involved in primary resistance to imatinib.

If you are not having an adequate response to treatment, you will be tested to see if your body is resistant to the medication.

Secondary resistance to medications occurs in people who are already on the drug. The most common reason for secondary resistance is the restart of BCR-ABL gene activity. This occurs most often by mutations in the part of the BCR-ABL gene involved in making tyrosine kinase. However, mutations in other chromosomes may also cause secondary resistance. Among the mutations affecting tyrosine kinase, the presence of the T3151 mutation creates the highest resistance to imatinib, dasatinib, and nilotinib.

Not all cancer cells are alike. Some cancer cells are killed easily. Others survive due to clonal evolution and continue to multiply. Over time, they make up larger and larger numbers of the cancer cells since the other cells die. Clonal evolution commonly occurs in people who are resistant to imatinib.

When Can I Stop Taking My Medication?
Since drug treatments for CML do not cure, CML is a chronic disease and needs to be treated throughout life. You may be tempted to skip taking your medications or stop taking your medications altogether, especially if you feel well and have responded to treatment. However, not taking your medication as the doctor instructed can have harmful results. It is important to follow your doctor’s instructions to get the best results. If you are having trouble taking your medication, talk with your doctor. Your doctor may have important information for you to consider.

Controlling Symptoms
While the focus is on treating your CML, maintaining your quality of life is also a very important goal. Don’t hesitate to talk with your cancer care team about symptoms, especially any symptoms that make it hard for you to take your medications. There are effective and safe ways to treat symptoms of CML and most of the side effects caused by CML treatments. When properly given, medications can relieve symptoms without causing other symptoms. Symptom relief can help some people be more active and may, indirectly, help them live longer.

♦ ♦ ♦ ♦ ♦

You can view the full version of the NCCN Guidelines for Patients™: Chronic Myelogenous Leukemia at NCCN.com.

Reproduced with permission from the NCCN Guidelines for Patients™: Chronic Myelogenous Leukemia V.1.2011 © 2011 National Comprehensive Cancer Network, Inc. All rights reserved. The NCCN Guidelines for Patients™ and illustrations herein may not be reproduced in any form for any purpose without the express written permission of the NCCN. To view the most recent and complete version of the NCCN Guidelines for Patients®, go online to NCCN.com.. NATIONAL COMPREHENSIVE CANCER NETWORK®, NCCN®, NCCN GUIDELINES™, and all other NCCN Content are trademarks owned by the National Comprehensive Cancer Network, Inc.

This article was originally published in Coping® with Cancer magazine, November/December 2011.

What Can You Do as Her Husband?

A Breast Cancer Guide for Men

by John W. Anderson

The first thing you can do is – nothing.

Huh? Doing nothing goes against every fiber of our being as men. We operate, quite well actually, when the rules of engagement apply: take business, sports, and war as three great examples. We have a mission, we make a game plan, and we execute. We seem to have a burning need to get things done – close a deal, wash the car, develop a new software program, pay the bills, run three miles on the treadmill in under thirty minutes. We’re supposed to be doing something, always, all the time. And with breast cancer, there’s so much that needs to be done – medical treatment decisions and scheduling; how and what to tell to family, friends and coworkers, and bosses; detailed conversations with insurance companies; and financial planning.

Well, all of this, and much more, needs to wait – for her. That’s because you need to let her take the lead on what happens next, and when it happens. Nothing happens until she decides it is time to make something happen. The reason for this is simple: it’s her body and her life that are under siege. Take your lead from her actions, not the other way around. The key here is to react, not act.

Your primary focus, as her husband, is to be there, physically and emotionally, in her moment of need. Never in your life will you have to show as much patience and restraint as at this moment of her initial diagnosis. Everything about who and what she is has been placed under severe attack. Her femininity has not only been called into question but is under threat of complete obliteration. Your role here is to remind her that everything is going to be okay and that you are there, just for her.

Never in your life will you have to show as much patience and restraint as at this moment of her initial diagnosis.

You are now the primary caregiver for her. Back when you first agreed to be her husband, you promised to be a caregiver if she ever got sick. Your wedding vows most likely said that you would be there for her, “to have and to hold, from this day forward, for better, for worse, for richer, for poorer, in sickness and in health, to love and to cherish ‘til death do us part.”

How, then, do you begin to start taking care of your wife? Easy. Listen. Listen. Listen.

You need to stop talking at her, or even with her, and just listen to her. Mirror her mood. If she wants to laugh, laugh with her. If she wants to cry and be afraid, comfort her and don’t minimize her fear. If she’s angry, validate that anger, and agree with her that this cancer thing really sucks. Watch for her emotions and follow them where they lead. But don’t react to her emotions and cause conflict. Hear what she’s worried about, what she is scared of, and what she needs from you. Only offer your opinion if, and when, she asks for it.

Your wife needs to feel wanted. The best way to make her feel wanted is to show her affection. If that affection gets more intimate, that’s fine, too. It’s good for her to know that you are still sexually attracted to her, but you shouldn’t put any pressure on her at this time if she’s not in the mood. You especially have to follow her lead when it comes to the bedroom. She needs to know you are there for her – as you promised you would be when you said those hallowed words, “for better or worse.”

When you’ve convinced her that you are there for her, that you will be there for her, be sure to give her plenty of time with family and friends. Women are much better communicators than men. She is going to need to share her feelings and fears with others besides you, so give her that time and space to have those talks. Make your home a welcoming place for friends and family and help them show their support for your wife (provided, of course, this is what she wants). And if you sense that she wants private time with someone, be aware of that and quietly excuse yourself before she has to ask you to leave the room.

Your physical presence is important after diagnosis, especially when it comes to medical appointments. That’s because four ears are better than two – always. She may not always hear all of what’s being said, or necessarily understand everything. When you listen to the doctor, really listen, you’ll probably hear information that she didn’t that will be helpful to her later when she’s thinking out her options.

When you go with her to see a doctor, take along a notebook to write down everything that you hear during each visit. If you aren’t a good note-taker, then have your loved one ask the doctor if you can bring along a tape recorder. If the doctor says no, respect that decision. The last thing that you want is to have the doctor-patient relationship begin on a rocky start. There are a large number of medical decisions that need to be made. When you mix the emotions and stress that you and your wife are feeling in with the tsunami of information that the two of you are receiving, some of it naturally gets jumbled. Note-taking helps to eliminate this problem.

The bottom line is this: you need to be there for her, whenever and however she needs you. Let her know that you not only love her the same way as you did before the diagnosis, but more so. It’s also important to tell her that you are still physically attracted to her as much as you were before she was diagnosed. Your mission is to protect and defend her femininity, and how she feels about herself as a woman. Your wife must know, on a deep emotional level, that she is your one and only. In other words, she is and always will be your trophy wife. You must become your wife’s biggest cheerleader.

You are riding on an emotional roller coaster. She, meanwhile, is aboard an emotional rocket ship. You are her rudder, and that rudder needs to be steady and true. The time has arrived for you to be her Mr. Big – being there, for her, for whatever she needs, whenever she needs it. This is not the time to be running off to the office, gym, or bar. This is the time to be a grown man, a real man, which means being her caregiver.

Her world, and yours, has been completely altered by this diagnosis. Nonetheless, many wives act like things are normal in order to keep some semblance of control over their lives. Continue to ask if there is something more you can do, even if it is the fourth, fifth, or sixth time you ask.

♦ ♦ ♦ ♦ ♦

John W. Anderson is an Emmy-nominated director for Lifetime Television’s Stop Breast Cancer for Life campaign and a writer whose work has appeared in The New York Times, Rolling Stone, The Nation, and many other publications. He has helped his mother, wife, sister, and a close friend in their battles against breast cancer. He lives in Roanoke, VA.

Excerpted with permission from Stand by Her: A Breast Cancer Guide for Men © 2010 John W. Anderson. All rights reserved. Published by AMACOM Books, www.amacombooks.org, a Division of the American Management Association.

This article was originally published in Coping® with Cancer magazine, November/December 2011.

Surviving the Holidays while Surviving Cancer

by Melissa Minkley, MSW

It was a week before Christmas and I was visiting with my sister who had completed her last radiation treatment for breast cancer earlier that day. As she pointed to a stack of plastic bins filled with Christmas decorations, she sighed and said, “I feel so bad, I’m not up to putting them out this year.”

I reflected on similar boxes in my living room that needed my attention. I quickly realized that I didn’t have an excuse for not having my decorations up, but she did.

With all that she had been through with surgery, chemotherapy, and radiation treatment in the last six months, no one would challenge her lack of Christmas spirit. But this was hard for my sister to accept. She repeatedly apologized for not sharing the joy of the season with the rest of the family.

Yes, the holidays are a time for celebration, rejoicing, and family togetherness. However, the season can be a stressful time for those who are coping with cancer. The additional holiday demands can create feelings of being overwhelmed, mixed with feelings of joy.

The season can be a stressful time for those who are coping with cancer.

If your family is coping with cancer this holiday season, here are some key points to consider as you plan for this joyful – and busy – time of year.

Make a Plan
Decide ahead of time which family traditions you want to participate in and which ones you might consider putting on hold this year. Feel free to adjust those plans as the holidays approach and your energy levels and mood change.

Create New Traditions
Make the most of your energy by creating new holiday traditions that will limit the amount of stress for yourself. Some traditions are comforting and have special meaning, but if not, consider letting the old, cumbersome traditions go and creating new ones.

Perform at Your Ability
Accept your limitations and don’t beat yourself up for not doing the things you think you should be doing. Be gentle with yourself. Respect what your body and your mind are telling you.

Ask for Help
Let others know how they can help you with shopping, baking, preparing meals, and wrapping presents. It’s OK to be specific about your requests for help. Those who care about you also have a desire to be helpful, and you can help meet their needs by allowing them to assist.

Simplify
Try to keep the holiday planning and traditions simple. Shop online, use mail-order catalogues, or just give gift cards. Eat out at a restaurant for a holiday meal or host a potluck supper.

Communicate Your Feelings
Talking with your family and friends about your wishes for the holidays will help you clarify your needs. Share your needs and concerns with your loved ones and encourage them to do the same. Be respectful of one another’s desires for the holiday season and be willing to compromise when needed.

It’s difficult to avoid the holidays. But it is possible to make them easier to manage with some thoughtful planning, and by communicating your needs with family and friends. Most importantly, be kind to yourself. There is no need to apologize for your limitations or for those moments when you lack the holiday spirit.

♦ ♦ ♦ ♦ ♦

Melissa Minkley is a counselor with Stillwaters Center, a community-based cancer support organization in Waukesha, WI. Since 1999, she has helped people with cancer and their families cope with the many psychosocial challenges of a cancer diagnosis.

This article was originally published in Coping® with Cancer magazine, November/December 2011.

Looking (and Feeling) Your Best During Treatment

by Jan Ping

So you’ve just been diagnosed with cancer and you are in shock. When it happened to me, I felt surprised and confused. I never thought this was going to be one of my life experiences. I had no family history, no glaring symptoms. I wanted to ask my physician if he was sure he had the right results, if he was sure that was my name on the film.

As much as I wished it would be otherwise, the name was mine; I had breast cancer. I immediately thought about my young daughter, my family. How would they cope with this? Then I thought about the side effects of treatment. All I knew about at that time was the possibility of losing my hair.

My way of coping was to give myself a job. I became determined to be proactive about my survival and recovery. Almost immediately, I thought not only about my own journey but also about others who would be getting this same news.

For most of my adult life, I had worked in the entertainment industry as a makeup artist. I knew how to make people look their best, so I began to think about how I could draw upon my life experience to do something positive. I didn’t know exactly what was coming, but whatever it was, I wanted to find those answers that would help me look and feel the best I could while I fought my cancer.

Each person who finds themselves fighting cancer, either male or female, will have a unique path. But there are a few things anyone can do to have some control over how they look and feel while undergoing treatment.

Of course, everyone is familiar with the hair loss associated with chemotherapy, but you are going to notice your skin changing too.

First, nurture a positive outlook. Optimism and laughter carry great power. There is a mind-body connection that cannot be denied, so use it. Also, surround yourself with others who can respect your attitude. I’m not saying you’ll never be blue or frustrated, but don’t allow yourself to wallow in these emotions. After all, you certainly had these same negative emotions before your diagnosis.

Beyond having a good mental attitude, there are some simple steps you can take to feel like your best physically. Of course, everyone is familiar with the hair loss associated with chemotherapy, but you are going to notice your skin changing too. It may become dry and sensitive. At one point, I had a rash from head to toe! I later found out that this is common, but no one had prepared me for a side effect like that.

To care for your skin during treatment, make sure you moisturize, moisturize, moisturize. Use skin care products made for sensitive skin. Every day, apply sunscreen that is gentle and unscented, and make sure you don’t neglect your ears and the top of your head. Protection from the sun is always important, but it becomes vital while undergoing cancer treatment.

If you have always had a good diet and exercise routine, keep it up. Exercise, eat healthy foods, and drink lots of water. Having a healthy and hydrated body on the inside will be reflected on the outside. Take soothing baths. Pamper your body; it is in the fight of its life.

If you wear makeup, choose an emollient-rich foundation. A cream foundation is more moisturizing, so if you are accustomed to using a powderbased foundation, try a cream instead.

Go natural with your nail care. Your hands and nails may experience drying and cracking. I advise clipping your nails short and pushing your cuticles back after a hot shower or warm bath rather than trimming them. Olive oil is great for softening cuticles. Buff your nails rather than use polish. Keep everything as natural as possible.

The human spirit is precious and deserves nourishment. Look in the mirror every day, think of one thing you like about your life and yourself, and voice it out loud. Ask yourself, Am I doing what I want with this life? Am I influencing others in a positive way? What small steps can I take that will lead me to be my best?

Take walks, take deep breaths, and smell the roses. Count your blessings, and don’t hesitate to be the most attractive, powerful, positive cancer fighter you can be.

♦ ♦ ♦ ♦ ♦

Emmy-award-winning makeup artist Jan Ping is a cancer survivor who devotes much of her time to raising awareness of the impact of cancer treatment on self-image. Her celebrity clients have included Betty White, Cindy Crawford, and Cheryl Tiegs. To learn more about Jan, visit www.JanPing.com.

This article was originally published in Coping® with Cancer magazine, September/October 2011.

Billy Davis Jr. & Marilyn McCoo

Finding success with the "it takes two" attitude.

by Julie McKenna

You may recognize Billy Davis Jr. as the former lead singer of The 5th Dimension from the 1960s and 1970s, or from his current tour entitled It Takes Two, with his wife Marilyn McCoo (also a former singer for The 5th Dimension). This successful tour is a tribute to rock and soul duets of the '60s, '70s, and '80s. Since 1965, Billy Davis Jr. has been part of the music industry, giving performances that have earned him 15 gold records, three platinum records and seven Grammy awards. One of the most inspiring performances, however, is his recent appearance as a prostate cancer survivor in the educational video Not By Myself.

In the first few months of 1999, Billy and Marilyn were touring in the production Hit Me With A Hot Note! - The Duke Ellington Songbook in celebration of the Duke Ellington Centennial. While Billy and Marilyn were busy with their heavy touring schedule, Billy received the devastating, although not entirely surprising news that he had prostate cancer.

In 1996 Billy had a PSA of 11 and his doctor encouraged him to get a biopsy. The results showed that Billy did not have cancer, but since he did have a high PSA, Billy kept a close eye on it and went in yearly after that to make sure it did not get any higher. In June of 1999, although he was not having any problems and did not think anything was wrong, his PSA had shot up to 18. Under the advice of his doctor he immediately had another biopsy, which showed he did have prostate cancer. Billy remembers thinking, "I've got to face the fact that this is in me and it's growing. I've got to start fighting this thing right now."

Billy wanted to get involved with making the Not By Myself video because he wanted to help men with prostate cancer manage treatment side effects.

Although devastated by the news, Billy and Marilyn knew they had to somehow find out more about his disease. "We went to libraries, got on the computer, bought books about the different treatments and the different ways to go - that's one of the things our doctor recommended we do because it was my decision and I should have as much knowledge about it as possible," recalls Billy. Both his primary doctor and a prostate cancer specialist at Johns Hopkins Hospital had agreed that the cancer was confined to the prostate.



At first Billy was concerned about the possible side effects of undergoing treatment for prostate cancer, but "that's without having some knowledge and wisdom about it," Billy explains. Billy decided to have surgery and asked Marilyn to call the doctor and set up the surgery. "I was never afraid of it," remembers Billy. "I was at total peace with it. I came through it in the time they said I would."

Since both Billy and Marilyn are in the public eye, they had to consider whether or not to go public with the news of his prostate cancer. "I didn't want to go public with it before the surgery," explains Billy. "In our business people create all kinds of gossip. A lot of entertainers go in the hospital under different names - that's what I had to do. But once I had the surgery and I was back on my feet, I went public with it. I went on the Today show and talked about it to the world."

Fellow performers and fans were encouraging during his recovery. "They were praying for us and were very supportive," says Billy. "I had a lot of fan support. Once I went public with it they sent me letters - it was a beautiful thing. They would come to shows and watch me on stage, thinking I didn't look any different even though I just got out of the hospital."

Billy wanted to get involved with making the Not By Myself video because he wanted to help men with prostate cancer manage treatment side effects such as incontinence and impotence. Billy has friends who have prostate cancer in their families, but still do not want to get a checkup out of fear. "I decided I would speak out to men about it because men are so headstrong when it comes to doing something about prostate cancer," explains Billy. "I was just happy to be able to talk about it, to be able to help somebody."

The video is aimed at the emotional needs of African-American prostate cancer survivors to help them through the treatment and side effects. It gives an overview of prostate cancer, interviews with various African-American survivors, and guidelines on how to deal with the side effects of treatment. "Prostate cancer can be a frightening experience," says Billy, explaining the need for the video. "The important thing is to get educated and not give up hope. Patients shouldn't be afraid to talk about all aspects of their treatment with their doctor, particularly potential physical and emotional side effects - subjects that many men find embarrassing to discuss." Amgen and Praecis Pharmaceuticals sponsor the video.

In addition to the Not By Myself video, Billy and Marilyn find time to be involved in national telethons and other charities. Recently, Billy and Marilyn formed a fellowship ministry in Los Angeles called Soldiers For The Second Coming, which meets monthly. They have also recorded gospel albums, appeared on numerous Christian television programs, and are currently working on a book together. In the little spare time he has after his numerous projects, Billy is working on a special blues show that will be a tribute to Ottis Redding, B.B. King, and other artists who have influenced him throughout his career.

Billy has enjoyed many years of success with his music career and now he is also enjoying success as a cancer survivor. When asked what advice he has for other prostate cancer survivors, Billy says, "I would tell them not to be afraid and to do as much research as possible. We've come to the point where we can take a lot of the fear out of the way. Don't be afraid to stay on top of it and have yourself checked." For years, Billy and Marilyn have worked as a team building successful careers, and now after surviving Billy's cancer together, their current tour title says it all: "it takes two."

♦ ♦ ♦ ♦ ♦

This article was originally published in Coping® with Cancer magazine, March/April 2001.

Depression & Cancer

 

Depression not only affects your brain and behavior – it affects your entire body. Dealing with more than one health problem at a time can be difficult, so proper treatment is important.

What is depression?
Major depressive disorder, or depression, is a serious mental illness. Depression interferes with your daily life and reduces your quality of life.

The following are signs and symptoms of depression:

• ongoing sad, anxious, or empty feelings;
• feeling hopeless;
• feeling guilty, worthless, or helpless;
• feeling irritable or restless;
• loss of interest in activities or hobbies once enjoyable, including sex;
• feeling tired all the time;
• difficulty concentrating, remembering details, or making decisions;
• difficulty falling asleep or staying asleep, or sleeping all the time;
• overeating or loss of appetite;
• thoughts of death and suicide or suicide attempts; and
• ongoing aches and pains, headaches, cramps, or digestive problems that do not ease with treatment.

If you develop depression after learning you have cancer, your depression may affect the course of your cancer, as well as your ability to take part in treatment.

How are depression and cancer linked?
There is no proof that one disease causes the other. However, when faced with a diagnosis of cancer, you may feel extreme stress, anger, sadness, or a number of other strong emotions. While these feelings usually lessen over time, they can develop into depression.

If you develop depression after learning you have cancer – or were depressed before your diagnosis – your depression may affect the course of your cancer, as well as your ability to take part in treatment. It is important for you to treat your depression even if you are undergoing complicated cancer treatment.

How is depression treated in people who have cancer?
Depression is diagnosed and treated by a healthcare provider. Treating depression can help you manage your cancer treatment and improve your overall health.

The most common treatments for depression include cognitive behavioral therapy, a type of psychotherapy (or talk therapy) that helps people change negative thinking styles and behaviors that may contribute to their depression; selective serotonin reuptake inhibitor (SSRI), a type of antidepressant medication; and serotonin and norepinephrine reuptake inhibitor (SNRI), another type of antidepressant medication.

While depression treatments are generally well tolerated and safe even if you’re being treated for cancer, possible drug interactions and side effects require careful monitoring. Talk with your healthcare provider about the medications you’re taking, as well as other treatment options. Not everyone responds to treatment the same way, and recovery takes time. Medications can take several weeks to work, may need to be combined with ongoing talk therapy, or may need to be changed or adjusted to minimize side effects and achieve the best results.

Along with cognitive behavioral therapy, additional forms of talk therapy have been shown to help people with cancer manage their depression. These include psychoeducation, which teaches you about your illness and its treatment; stress management training, which teaches you different ways to cope with anxiety; and problem-solving therapy, which can help you identify problems that interfere with your daily life and that contribute to depressive symptoms and find ways to solve those problems.

You can also join a support group, which provides an important outlet for sharing the difficult emotions you’re feeling. You can learn how to cope with your depression and your cancer from others who are going through similar experiences.

If you think you are depressed or know someone who is, don’t lose hope. Seek help for depression.

♦ ♦ ♦ ♦ ♦

Source: National Institute of Mental Health

This article was originally published in Coping® with Cancer magazine, November/December 2011.

Feel Like You’re Losing Your Mind?

Chemo Brain May Be to Blame

by Gabriela Höhn, PhD

Undergoing chemotherapy for breast cancer several years ago, I began to fear that I was literally “losing my mind.” I knew about the usual side effects – hair loss, fatigue, nausea, loss of taste, insomnia – and was as ready for them as much as I could be.

But I hadn’t expected to forget new names or phone numbers, even after they were repeated several times. I didn’t know that I would have trouble concentrating on formerly routine tasks. I wasn’t aware that I could watch reruns of Law and Order without remembering that I’d already seen a particular episode, or if I did, that I wouldn’t remember how it ended. I even started doubting my own reality when I was told I had agreed to do something, as I had no recall of even having the conversation. And I would be easily distracted, finding items in odd places around the house – not because I had planned to leave my cell phone in the laundry basket, but because my attention had been pulled elsewhere at that moment.

Sometimes the simplest task or decision can seem too overwhelming, even for those who formerly juggled work, family, school, and other demands.

Much to my relief, my symptoms were “all in my head.” But I found out they weren’t that unusual. Many cancer survivors are all too familiar with the foggy thinking, frequent memory lapses, and concentration problems that are often part of the cancer treatment experience. Informally known as chemo brain, it often affects those in treatment for cancer with chemotherapy. However, chemo brain can appear in a variety of cancer diagnoses in which chemotherapy is not even used, suggesting that the symptoms may be caused by the cancer itself.

Whatever the cause, the effects are usually temporary and short-lived. Most survivors generally feel clearer and more like themselves when treatment ends, with continued improvement over the next year or so. However, for some of us, lasting difficulties in cognitive functioning can be unexpected and distressing.

Described clinically as cancer-related cognitive dysfunction, up to 30 percent of survivors experience long-term difficulties with memory, language, attention and concentration, visual-motor skills, and planning and organization. You may notice difficulties with word-finding (coming up with the correct word in a conversation) and problems focusing your attention or finding your way around. Sometimes the simplest task or decision can seem too overwhelming, even for those who formerly juggled work, family, school, and other demands. What can we do if we find ourselves wondering why the keys were left in the freezer – again? Quite a lot, it turns out.

Building on proven strategies I have used as a clinical neuropsychologist, here are some suggestions to help you cope with chemo brain.

Memory
Keep a memory log, journal, or even a voice recorder to keep track of everything on your to-do list and anything else you need to remember. If you’re tech-savvy, use your smartphone or laptop. Make checklists, and return things to the same place after using them. Write down names and phone numbers, and take note of when and where you meet someone new – it may come in handy later.

Attention and Concentration
Focus on one thing at a time, and minimize distractions. Establish daily routines, and take advantage of the times of day when your mental functioning is best. Don’t try to multitask; shifting attention between tasks takes a lot of mental energy.

Planning and Organization
Keep things as simple as possible. Organize your home, work, and medical papers. If needed, get help in setting up new organizational systems, or in maintaining ones you have already. Spread out appointments so that you don’t need to rush, and prepare as much as possible. For example, leave envelopes to be mailed on the floor by the front door so you won’t forget them when you leave the house.

Everyday Thinking
Double-checking can ensure that you haven’t left important things behind. Using your checklists frequently can reduce anxiety. Ask for help from others, even if you’re fiercely independent and never ask for help. Loved ones want to lend a hand. Exercise and good nutrition also help keep the brain in good shape.

♦ ♦ ♦ ♦ ♦

Dr. Gabriela Höhn is a licensed clinical psychologist and neuropsychologist in New York, NY. A cancer survivor herself, Dr. Höhn developed and conducts chemo brain workshops at Beth Israel Medical Center.

For a specialized chemo brain checklist, go to gabrielahohn.com.

This article was originally published in Coping® with Cancer magazine, November/December 2011.

On Surviving Breast Cancer – A Nurse’s Perspective

by Kathyrn T. Negri, RN

Some years ago while working on the medical unit, I overheard a doctor tell a woman she had breast cancer. The woman was in disbelief. She let out an agonizing cry and started shaking uncontrollably. My heart ached for her. I couldn’t help but wonder how I would react to such news.

It wasn’t until years later that I found myself in the same predicament. As a registered nurse, I ended up on the other side of the bed. It was my turn to be told, “Yes, you have breast cancer.”

My reaction was somewhat different from the one mentioned above. To my surprise, I was much calmer. Because of my nursing experience, I knew that breast cancer was not a death sentence. This gave me reassurance and hope.

My life had taken a sudden change in course. I was forced onto the path of warfare. I was facing a battle with inflammatory breast cancer, the most aggressive form of the disease and the most difficult to treat. Despite this, I was determined to fight the battle with all my might. I was determined to do all that was required to be a survivor. Here is what it took for me to survive cancer, its treatments, and its adverse effects.

Spiritual Guidance
First and foremost, I put my trust in God to help me to accept the diagnosis. I knew that nothing was too great for him to fix. Knowing this enabled me to move forward with a positive attitude. Rather than questioning, “Why me?” I focused on following the doctors’ prescribed plan of care and on recovery. I let go and let God take over.

Because of my nursing experience, I knew that breast cancer was not a death sentence. This gave me reassurance and hope.

Strong Support System
I was blessed with a strong support system. I experienced an outpouring of concern and affection from my family, friends, neighbors, colleagues, club sisters, and church family. Each one contributed to my well-being, by sending a get-well card, calling, or visiting. Everyone’s prayers and encouragement gave me the strength and willpower to fight back. My husband and my mother were my “rocks” as well. It was most helpful when they were present at my consultations, doctor’s appointments, surgery, and treatments. They were always accepting of the diagnosis and remained optimistic. Most importantly, they were there to help me make important decisions about my treatment. Their presence was reassuring and helped alleviate my anxiety.

Knowledge
This played a key role in my survival. In order for me to be a part of the decision making, I needed in-depth knowledge of breast cancer, in particular, inflammatory breast cancer. My nursing education in this area was basic and outdated. I began thorough research on the subject and gained a wealth of information on the newest technology and treatments. This information enabled me to ask the right questions during my consultation with the medical oncologist. The answers I got helped me to understand my cancer treatment and to make informed decisions.

Collaboration with Healthcare Providers
I had the best healthcare professionals on my team. They each worked compassionately and skillfully to restore me to optimal health. Each one had years of experience treating women with breast cancer. I felt assured of a favorable outcome. Still, I was an active team player and worked in partnership with each of my physicians.

I asked the appropriate questions, I reported significant data, and I assisted in making recommendations regarding medications and treatments. I kept track of my blood results and made sure that I followed up with appointments and procedures. I was extremely involved in my plan of care. Because I was proactive, I had the best outcome.

Today, I can say unequivocally that I am a breast cancer survivor. My faith, family, and friends helped me to stay focused and keep on the road to recovery.

Going forward, I would advise anyone who hears the words, “Yes, you have cancer,” to not panic. It doesn’t mean life is over. Rely on spiritual guidance and your support system for solace. Be knowledgeable of your disease, and work in partnership with your healthcare providers. In doing so, you, too, can survive cancer.

♦ ♦ ♦ ♦ ♦

Kathyrn Negri is assistant director of Nursing at North Shore–Long Island Jewish Health System’s Southside Hospital and a freelance writer. Kathyrn lives in Central Islip, NY with her husband and two daughters.

This article was originally published in Coping® with Cancer magazine, November/December 2011.

Surviving – Even Thriving – with an Ostomy

by Dorothy Doughty, MN, RN, CWOCN, FAAN

Coping with a cancer diagnosis is a huge challenge for anyone – but if your cancer involved the bladder, rectum, or cervix, you may also be coping with an ostomy. An ostomy is an opening on the abdominal wall that provides for elimination of stool or urine. A person with an ostomy must wear a pouch to collect the stool or urine.

This is a major change for anyone, and it is common to have questions and concerns. How will I live with a bag? Will I smell? Will the bag show through my clothes? Can I shower? Am I going to be on a special diet? Can I go back to work? Can I travel? How will my sexual partner feel about me? It is also common (and normal!) to have days when you feel overwhelmed and depressed, and other days when you are angry that this happened to you.

Adjusting to an Ostomy
Be kind to yourself. This is a big adjustment, and the way people adjust is to grieve the way things “used to be” while also learning how to manage things the way they are now. It’s OK to feel sad, and it may help to have people you can talk to. You may want to visit the website for the United Ostomy Associations of America (ostomy.org) – it can be helpful to read the tips and advice provided by others with an ostomy.

It may take you a few weeks to become comfortable emptying and changing your pouch, but it gets easier.

Ostomy pouches are now odor proof, flat, and fairly easy to manage. It may take you a few weeks to become comfortable emptying and changing your pouch, but it gets easier. Once you get the hang of it, you should be able to go back to work, go out to dinner, and get back to your regular routine. Other people won’t even know you have an ostomy unless you choose to tell them.

Daily Activities
You can shower with your pouch on or off. If you shower with your pouch on, you may want to apply waterproof tape to the edges to protect your seal. When you get out of the shower, you can use a hairdryer on the cool setting to dry the back of your pouch.

Clothing
Most people can wear the same type of clothing as before the ostomy. You may want to wear snug undergarments with a little bit of spandex to hold your pouch securely against your abdomen.

Diet and Fluids
If you have a colostomy, you can eat the same foods you ate before, but you need to eat enough fiber and drink enough fluid to prevent constipation. If you have an ileostomy, be careful with foods high in roughage, such as corn, coconut, large seeds, mushrooms, nuts, peels, and popcorn; add these to your diet in small amounts, chew well, and drink plenty of fluids (to keep the fiber from forming a blockage). You should drink at least 10 to 12 glasses of fluid a day to prevent dehydration. If you have a urostomy, you need to drink 8 to 10 glasses of fluid spaced evenly throughout the day.

Gas and Odor
These are common concerns for people with colostomies and ileostomies. Remember, the pouches are odor proof, so odor occurs only when you empty or change the pouch (or if it starts to come loose). To reduce odor when you empty the pouch, add mints or a teaspoon of mouthwash to your pouch each time you empty it. You can also add commercial deodorants to the pouch or spray them in the air before you empty your pouch.

You can reduce gas by limiting gasforming foods like beans or cabbage. Products like Bean-O and Gas-X also help to reduce gas. To muffle the noise, press your arm or hand against your stoma when you feel gas rumbling. Gas coming out of a stoma sounds more like your stomach growling, so you can always just say you are hungry.

What About Sex?
Having an ostomy shouldn’t keep you and your partner from sharing sexual pleasure. It’s helpful to empty your pouch before beginning sexual activity and to use special underwear to cover and secure the pouch. This lets you focus on your partner rather than the pouch. It’s important to talk openly with your partner about your feelings.

Having an ostomy is a big adjustment for anyone, but you can do it. You will find that life with an ostomy can be just as rewarding (though not quite as easy) as life with your original plumbing.

♦ ♦ ♦ ♦ ♦

Dorothy Doughty has been an ostomy nurse specialist since 1980 and is currently director of the Emory University Wound Ostomy Continence Nursing Education Center.

To find an ostomy nurse in your area, visit the Wound, Ostomy and Continence Nurses Society website at wocn.org.

This article was originally published in Coping® with Cancer magazine, November/December 2011.

Healthy for the Holidays – 10 Tips for Cancer Survivors

Survivorship programs offer resources and research for staying healthy year-round

 

Surviving the holidays with one’s waistline, bank account and sanity intact can be challenging for everyone, but the season affords specific pitfalls – and opportunities – for cancer survivors who are mindful of staying healthy throughout the season and beyond.

One in 20 adults in the U.S. is a cancer survivor, and the number of survivors is growing, many of whom have long-term health needs resulting from the disease and its treatment.

Karen Syrjala, PhD, co-director of the Fred Hutchinson Cancer Research Center Survivorship Program, offers these tips for survivors. Most of them apply to anyone who wants a healthier holiday and less-stressful new year.

• Know your holiday stress points. Do certain family members put you on edge? Do you take on too much and then find you don’t have time for it all? Start by asking yourself what makes you feel most pressured or irritable, and then what choices do you have to make this stress more manageable? If you have to see a difficult relative, can you arrange something fun afterward? This way you can remind yourself that in a few hours you’ll be doing something that you enjoy. It will help you get through a potentially difficult time.
• Are there holiday events or traditions you could live without? Can you gracefully bow out of gatherings or obligations you no longer enjoy? Do you really need to bake all those cookies? Can this be the year you send a Christmas email or a link to your Facebook page instead of all those cards?
• Are there non-holiday events you could postpone for a week or two? If your holiday to-do list is longer than Santa’s, perhaps schedule your next routine CT scan or mammogram after the holidays.
• Remember your precious people. Schedule “together time” with those who may need you the most this holiday season, or those you most want to see. By scheduling ahead you can make sure you make time for what matters most to you. Our bodies and brains respond positively in lots of ways to time spent connecting with those we are close to; consider this important for your health during the holidays.
• Keep moving. Physical activity is the clearest step you can take to benefit your health during the holidays and any time of year. It is certain to make you feel good and help your body and brain to function better. It can even reduce your cancer-related risks. Make opportunities to walk or take stairs for at least 10 minutes at a time. If exercising alone is hard, check with your local Y to see if they have a program for cancer survivors.
• Practice healthy nutrition. Know what foods help you feel and do your best, then focus more on giving your body what it needs (such as fruits and vegetables) and less on trying not to eat certain foods. Eat sweets in moderation and make sure you also get protein, fiber and healthful fats. Eat your healthy food before going to a party so that it is easier to indulge in moderation. Make an appointment with a nutritionist if you are unsure what is healthy for you or if you have digestion problems.
• Know how alcohol affects your health. Alcohol use has been associated with an increased risk of certain cancers. If you drink, do so in moderation (one drink a day for women and two for men). Before a social event, plan ahead what and how much you’ll drink. Alternate between alcoholic and non-alcoholic drinks, such as sparkling water with lime, to help pace yourself and stay hydrated. If it’s hard to say no once you’ve started drinking, then plan to stick with non-alcoholic drinks.
• Relax your body and mind. When you are more relaxed you sometimes get more done – and feel better doing it. When you feel wound up or overwhelmed, take five minutes to breathe deeply and scan your body from head to toe. Close your eyes and breathe in through your nose to a count of four, hold your breath for a count of two, breathe out through your mouth for a count of four, and repeat. Check your forehead, jaw and tongue for tightness, relax; then check your neck and shoulders, stretch and move them to find a comfortable position, then continue with your arms, chest, abdomen and legs. You can even breathe and relax your body while driving – just don’t close your eyes!
• Tend to your body’s needs. Notice if there are parts of your body that aren’t working well. Make a list and an appointment with your doctor for after the holidays. Talk with your doctor if you have fatigue that hasn’t improved with time; mental fog that makes it hard to work or remember things; neuropathy (numbness or pain in your feet, hands or elsewhere), incontinence or other problems that affect your quality of life. Knowing you have a plan for attending to these problems can ease your mind during the holidays and let you focus on other things.
• Have a long-term plan for your survivorship care. Schedule an appointment to go over your survivorship needs if you aren’t sure about your risks for long-term problems or you aren’t sure what symptoms to watch for to maintain your health. Tap into a survivorship program to help you detail a follow-up care plan to share with your primary care provider. Make appointments now so you can forget about them during the holidays.

♦ ♦ ♦ ♦ ♦

In the Northwest region, visit the website of the Fred Hutchinson Cancer Research Center Survivorship Program at www.fhcrc.org/survivorship. For information on other LIVESTRONG Survivorship Programs of Excellence visit www.livestrong.org/What-We-Do.

Updated Guideline on the Use of Antiemetics to Prevent Vomiting and Nausea after Chemotherapy and Radiation Issued

 

The American Society of Clinical Oncology has issued an update to its clinical practice guideline on the use of antiemetic medications to prevent vomiting and nausea resulting from treatment with chemotherapy or radiation. The new guideline includes comprehensive, stratified recommendations on the use of antiemetics during treatment with chemotherapy drugs that are classified as high, moderate, minimal, and low risk for causing vomiting and nausea.

The updated guideline, American Society of Clinical Oncology Clinical Practice Guideline Update on Antiemetics, was published in the Journal of Clinical Oncology. The new recommendations were developed by ASCO’s Antiemetics Guideline Panel and are based on a systematic review of new and existing medical literature.

More than half of all people with cancer experience nausea or vomiting during the course of their treatment. If nausea or vomiting becomes severe enough, dehydration and other health problems can occur. In some cases, these side effects can cause cancer treatments to be delayed, halted, or changed, which may have a detrimental effect on overall treatment outcomes. In the past two decades, newer approaches and better antiemetic medications have reduced the incidence of both nausea and vomiting in people undergoing cancer therapy.

More than half of all people with cancer experience nausea or vomiting during the course of their treatment.

“Antiemetics serve a vital role in reducing the risk of nausea and vomiting in cancer care, and when used appropriately, can vastly improve patients’ treatment experience and enable them to carry on with their lives,” says panel cochair and study author Ethan Basch, md, associate attending physician at Memorial Sloan-Kettering Cancer Center in New York, NY. “Over the past two decades, major strides have been made in recognizing the scope of this problem. There have been improvements in stratifying the risk of side effect risks according to the type of drug treatment used. This guideline update reflects further progress refining antiemetic approaches and minimizing these side effects.”

The guideline provides detailed information about the risk of vomiting and nausea associated with various anticancer agents and radiation therapy, as well as the specific recommended antiemetic regimens for each. Dr. Basch points out that a major goal in cancer care is to personalize therapy to each individual, and that this guideline helps physicians do so by stratifying each person’s antiemetics needs based on his or her particular treatments.

One key recommendation in this update is the reclassification of the risk for vomiting and nausea from the combination of an anthracycline and cyclophosphamide, a commonly used chemotherapy regimen. Each drug alone is classified as having a moderate risk, but based on continued scientific data, the combination now is considered highrisk. This chemotherapy combination is widely used in people with breast cancer and non-Hodgkin lymphoma. This change is significant because of the widespread use of this combination, and the potential to improve the individual’s experience during treatment and avoid treatment delays or dose reductions.

In addition, the guideline provides direction on the use of fosaprepitant, a relatively new intravenous formulation of aprepitant. Data suggest that fosaprepitant is equivalent to aprepitant in terms of control and prevention of nausea and vomiting. However, fosaprepitant is given for one day, while aprepitant is given for three days to people undergoing chemotherapy that present a high risk of vomiting and nausea. This may represent a more convenient or feasible option for some people. These drugs are part of the guideline-recommended three-drug combination (which includes a 5-HT3 receptor antagonist and the corticosteroid dexamethasone) for everyone who receives high-risk chemotherapy.

“In general, we have more effective and better tolerated antiemetic agents today, and we have also learned how to use the available agents in more effective ways,” says panel cochair Gary Lyman, md, mph, professor of medicine at Duke University and the Duke Cancer Institute in Durham, NC. “Overall, oncologists have a better understanding and an increasing number of tools to reduce the side effects of cancer treatment. In addition to better strategies for preventing vomiting, we’ve made tremendous progress in preventing infection and managing pain, as well as addressing the psychological and emotional challenges of cancer.”

Some of the guideline’s other recommendations include the following:

• For people who receive chemotherapy with a moderate risk of causing nausea and vomiting, the two-drug combination of palonosetron and dexamethasone is recommended. If palonosetron is unavailable, a first generation 5-HT3 serotonin antagonist may be substituted.
• For chemotherapy agents that carry a low risk of inducing vomiting or nausea, the panel recommends a single dose of dexamethasone prior to chemotherapy. It recommends that no antiemetic agent be routinely given before or after chemotherapy to prevent nausea or vomiting brought on by minimal-risk chemotherapy drugs.
• For people who receive high-risk radiation therapy, the panel recommends that they receive a 5-HT3 antagonist before each radiation fraction, and at least 24 hours after completing radiation therapy. They should also be given a five-day course of dexamethasone during fractions one to five.

♦ ♦ ♦ ♦ ♦

For the full ASCO guidelines, visit ASCO.org

This article was originally published in Coping® with Cancer magazine, November/December 2011.

Getting Up From Your Desk Can Put the “Breaks” on Cancer

 

As many as 49,000 cases of breast cancer and 43,000 cases of colon cancer occurring in the U.S. every year are linked to a lack of physical activity, according to estimates presented at the American Institute for Cancer Research annual conference. The estimate underscores the critical role that both activity and inactivity play in the development of specific cancers.

"This research suggests that every day, we're each given numerous opportunities to be active and protect ourselves from cancer, not one," said AICR spokesperson Alice Bender, MS RD. "We need to start thinking in terms of make time and break time."

Based on these research findings, AICR is urging Americans to make time for physical activity and break every hour of sitting with 1 to 2 minutes of activity. These breaks can be as simple as walking to a colleague's office instead of sending an email or going to the kitchen to get a glass of water.

"Making time to get at least half an hour of moderate to vigorous activity every day is great, and more Americans need to do it, but those 30 minutes represent only a sliver of our day," Bender stated. "This new research on break time suggests there are small things we can do in the other 15 hours and 30 minutes we spend awake that also make a big difference."

Make Time: Physical Activity Clearly Lowers Risk of Cancer
Providing the latest evidence of the protective link between physical activity and various cancers, Senior Research Epidemiologist Christine Friedenreich, PhD, of Alberta Health Services-Cancer Care in Canada, presented just-published findings from the Alberta Physical Activity and Breast Cancer Prevention (ALPHA) Trial. The latest results from this trial involve C-reactive protein, a marker of inflammation, which is linked to cancer risk. In a study appearing in the October issue of the journal Cancer Prevention Research, moderate to vigorous daily activity reduced C-reactive protein levels among post-menopausal women.



Although researchers have not yet identified how inflammation increases cancer risk, it is known that the inflammation process produces cytokines (immune-response chemicals that encourage cell proliferation and suppress cell death) that contribute to increased cancer risk. Previous studies have shown that the immune cells activated by the inflammatory response, such as macrophages and neutrophils, release reactive elements like oxygen and nitrogen, which can damage the DNA and produce mutations.

Dr. Friedenreich's research demonstrates that even in previously sedentary postmenopausal women, a moderate- to vigorous-intensity exercise program results in changes in several biomarker levels that are consistent with a lower risk for postmenopausal breast cancer.

By extrapolating data from the ALPHA trial as well as previous epidemiological investigations involving adiposity, insulin resistance, mammographic density, sex hormone levels and other indicators of cancer risk, Dr. Friedenreich reported that engaging in moderate activity, like brisk walking, can significantly reduce the risk of certain cancers.

"In breast and colon cancers, for example, we're seeing overall risk reductions of about 25 to 30 percent associated with higher levels of physical activity. With prostate cancer the evidence isn't as strong but it's still there - about 10 to 20 percent lower risk. For endometrial cancer, we are finding about 30 to 35 percent risk reduction with more physical activity.

"These numbers are powerful," she said. "The bottom line: For many of the most common cancers, it seems like something as simple as a brisk walk for 30 minutes a day can help reduce cancer risk."

Break Time: The Emerging Science of Sedentary Behavior
Neville Owen, PhD, PhD, Head of Behavioral Epidemiology at Australia's Baker IDI Heart and Diabetes Institute, presented evidence that suggests sitting for long periods of time is associated with health risks – even for people who are regularly physically active.

"Sitting time is emerging as a strong candidate for being a cancer risk factor in its own right. It seems highly likely that the longer you sit, the higher your risk. This phenomenon isn't dependent on body weight or how much exercise people do," said Dr. Owen.

Recent evidence suggests that key indicators of cancer risk are lower when prolonged sitting is interrupted with brief (1-2 minute) breaks, said Dr. Owen.

"In our studies, we've measured waist circumference, insulin resistance and inflammation – indicators of cancer risk common to many physical activity-cancer studies. We found that even breaks as short as one minute can lower these biomarkers.

Sedentary time is also likely an important factor for cancer survivors, said Dr. Owen. For survivors, diabetes and cardiovascular disease are particular concerns and overweight and obesity increases the risk for both conditions. "Television viewing time, a sign of sedentary behavior, appears to increase subsequent risk of weight gain in cancer survivors."

Dr. Owen reported study findings showing that the majority of adults' days are spent sedentary. One accelerometer study found that 60 percent (9.3 hours) of subjects' waking day was spent sedentary, including meals, commutes and computer/television time, while another 35 percent (6.5 hours) was spent engaged in light activity such as walking to a meeting. Office workers can spend over 75 percent of their working hours sitting, with bouts of 30 minutes or more of unbroken sedentary time common.

"Make Time" + "Break Time" = Cancer Protection
AICR's Bender put the new research in perspective. "A person who gets up in the morning and makes time by spending 30 minutes on the treadmill probably feels pretty pleased with himself – and he should. He's making excellent progress and doing a lot more than most Americans. For those 30 minutes, he's hard at work lowering those cancer risk indicators," Bender said.

"But what happens during the other 15 hours and 30 minutes he spends awake? If he's like most Americans, he sits – on his commute, at the office, and at home. So this person, who fits the traditional definition of someone who's physically active, is actually active just 3 percent of his waking day."

"By thinking in terms of break time, however, Americans can infuse the remaining 97 percent of their day with short periods of activity that can protect against many cancers."

Practical Tips for Moving More
By now, we've all heard advice to Take the stairs, not the elevator. it's certainly a good habit to get into, but there are many more ways to infuse your day at work with more activity:

• Set the timer on your computer to remind you every 60 minutes that it's time to step away from your desk and take a short walk down the hall.
• "Walk with me." Got a quick thing to discuss with a co-worker? Instead of sending an email, ask him or her to join you for a walk to hash it out on the go. The pedeconference: It's not just for TV characters anymore.
• Keep light hand weights in your office to use while reading email or talking on the phone.
• During all phone calls and phone meetings, stand up and walk around.
• Your office or cubicle wall is all you need for simple activities like stretches, vertical push-ups and leg lifts.
• For a more vigorous activity break, ask your employer to put a punching bag or chin-up bar in your break room.

♦ ♦ ♦ ♦ ♦

Source: American Institute for Cancer Research, www.aicr.org

AICR's Foods that Fight Cancer™

Web Tool Offers Consumers the Latest Research, Nutrition Information, Practical Tips and Recipes

 



The American Institute for Cancer Research (AICR) has launched a new web-based tool that details the current state of the research on the food-cancer link, and offers practical strategies for adding cancer-protective foods to the day.

AICR's Foods that Fight Cancer™, a major update and expansion of a popular section of the AICR website, features the foods AICR gets asked about most frequently. Starting with four of the most asked-about foods (including blueberries, cruciferous vegetables and flaxseed), AICR will add or significantly update new foods every month.

"Our goal is to provide a practical and accessible web resource that people interested in lowering cancer risk can use as they plan meals, and that health professionals can use to stay abreast of the latest evidence-based information, and answer their patients' questions," says AICR's Nutrition Communications Manager Alice Bender, MS, RD.

AICR's Foods that Fight Cancer™ details the strength of current evidence linking a given food to lower cancer risk by presenting the conclusions of systematic reviews of the scientific literature conducted in AICR's expert report and its updates. But it also highlights open areas of investigation – the ongoing research in labs, clinics and populations that is seeking to answer still-lingering questions.

"We're looking at whole new ways that fruits, vegetables, whole grains and their compounds can be protective."

Along with the (thoroughly cited) research on the foods' cancer-protective potential, AICR's Foods That Fight Cancer™ provides recipes, tips for cooking and purchasing, and links to relevant resources. Users can receive personalized responses to their diet-cancer questions by using the Ask the Expert tool.

"We're looking at whole new ways that fruits, vegetables, whole grains and their compounds can be protective," said AICR Nutrition Advisor Karen Collins, MS, RD, CDN, an expert on diet and cancer prevention who worked with AICR to examine the research and develop the Foods That Fight Cancer content.

Recent findings in genetics, colon bacteria metabolism, life-course development and epigenetics – turning genes "on" and "off" – are only beginning to unravel the protective role of foods among populations.

"There are so many different pathways by which these compounds can have an effect. It's so complex and incredible, and there's so much to learn… I think the science looking at the link between foods and cancer risk is now more promising than ever," said Collins.

Visit www.aicr.org/foods-that-fight-cancer/ regularly to see the most recent foods added to the site.

♦ ♦ ♦ ♦ ♦

Source: American Institute for Cancer Research, www.aicr.org

ASCO Booklet Helps Cancer Survivors Transition to Life after Treatment

 

With more patients surviving cancer than ever before, the American Society of Clinical Oncology (ASCO) released a new publication to help patients adjust to life after active cancer treatment. The free booklet, based on oncologist-approved content from ASCO’s patient information website, Cancer.Net, helps people understand what to expect as treatment is completed, explains common challenges faced by survivors, and offers suggestions for next steps following treatment.

“The period following active cancer treatment is full of questions for our patients,” said Melissa Hudson, MD, chair of ASCO’s Survivorship Committee and Cancer.Net associate editor. “It is one of the most complex aspects of the cancer experience because it is different for every person. It is important for patients to be well-informed about the challenges they may face as they transition back to their everyday lives and work to regain their health and quality of life. As an oncologist, I see ASCO’s new survivorship booklet as a great, concise resource we can offer patients as they near the end of treatment.”

“This booklet is designed to be a starting point for ongoing discussions between patients and their health care teams about how to cope with physical, emotional, and social changes, focusing on the person’s long-term health,” said Diane Blum, MSW, editor-in-chief of Cancer.Net. “This easy-to-read booklet provides useful and reliable information on the transition to survivorship, to help people get answers to such questions as what symptoms they should watch for, who will lead their ongoing care, and why it’s important to return for check-ups.”

Progress in cancer research has helped save or extend the lives of millions of people. Thanks to advances in medical research, there are about 12 million cancer survivors today in the United States. About 68 percent of people diagnosed with cancer today are expected to live at least five years beyond their diagnosis. And, approximately 15 percent of all cancer survivors were diagnosed more than 20 years ago.

Despite these important gains, cancer survivors still face a range of long-term challenges from their disease and its treatment. A recent survey found that 93 percent of survivors report emotional issues following treatment including anxiety over potential recurrence, depression and grief. Another study of adults who had been diagnosed with certain cancers before age 21 and who survived at least 5 years after diagnosis found that 62 percent of those between the ages of 18 and 48 had at least one chronic health condition.

ASCO’s booklet provides a valuable resource to this unique population, covering such topics as:

• Common survivorship challenges and coping strategies
• Keeping a personal health record
• The importance of follow-up care
• Managing long-term side and late effects
• Helpful questions to ask about their survivorship care
• Glossary of survivorship terms as well as a list of resources <.li>

This free booklet, entitled Cancer Survivorship: Next Steps for Patients and Their Families, is available to download at cancer.net/survivorship. Print copies can be ordered by calling ASCO University’s Bookstore at 888-273-3508 or visiting cancer.net/estore.

♦ ♦ ♦ ♦ ♦

Former Olympic Gymnast Shannon Miller Squares Off Against Ovarian Cancer

by Laura Shipp

In 1996, a petite, 19-year-old Shannon Miller wowed the country as she led the U.S. Olympic Women’s Gymnastics Team – coined the Magnificent Seven – to a first-ever team gold medal. A victory that has yet to be repeated by the U.S. Women’s team. She then went on to achieve another first during the ’96 Games: becoming the first American to win Olympic gold on the balance beam.

All told, Shannon racked up nine World Championship medals (five of them gold) and seven Olympic medals during her gymnastics career. She holds the distinction of being the most decorated gymnast, male or female, in U.S. history. A testament to her strong will, intense determination, and extraordinary endurance.

These qualities would serve her well in facing her latest opponent, one more formidable than any lithe Romanian.

The Diagnosis
During an annual exam last December, doctors discovered a cyst on Shannon’s ovary. She was only 33 years old, in excellent shape, and had no symptoms, so she wasn’t too worried. However, after the mass was removed, tests showed that it was a malignant germ cell tumor – a form of ovarian cancer.

“Whether it’s over a cup of coffee or on Good Morning America, we need to share what we’re going through.”

In a recent interview with Coping® magazine, Shannon confides, “I’m very thankful that by the time I knew it was cancer, it was already out. Hearing the word ‘mass’ was terrifying enough.”

An Aggressive Approach
Though her cancer was found at an early stage, Shannon decided to undergo nine weeks of aggressive chemotherapy to fend off a possible recurrence.

“You’re always going to worry about a recurrence,” she says, “but I know that I’ve done everything that I could. I didn’t leave anything on the table.” Even though that meant enduring the unpleasant side effects associated with cytotoxic treatment.

“The nausea was what really did it for me,” Shannon says. “I had antinausea patches. I tried everything I could to figure out what worked. But you just have to get through it and do the best that you can.”

The other difficult part? Letting go of control. “I had to learn how to let others help me,” she admits before adding with a laugh, “I’m a little bit of a control freak. It was humbling for me to realize that I don’t have to be Superwoman and that it’s okay to rely on other people.”

Focus on Fitness
As a former Olympic athlete, Shannon has always been passionate about fitness. She even has a website, ShannonMillerLifestyle.com, dedicated to encouraging women to embrace healthy, active lives. Shannon credits her own active lifestyle with helping her get through treatment. She says, “I found out during my cancer experience that there is a lot more research now on fitness during chemotherapy and how effective it is in helping with the side effects, and even helping to prevent recurrence of certain cancers.”

Now, in addition to espousing the benefits of physical fitness, Shannon is on a mission to encourage women to speak out about gynecologic cancers. “One of the reasons I went so public with my diagnosis and my treatment,” she says, “is because we tend to think of women’s cancers as something we don’t want to talk about. But we do need to talk about it. We do need to share our stories. Whether it’s over a cup of coffee or on Good Morning America, we need to share what we’re going through so that other women don’t feel ashamed about going through the same stuff.”

♦ ♦ ♦ ♦ ♦

You can follow Shannon’s cancer journey on her personal blog, My Journey, at ShannonMillerLifestyle.com/my-journey. The site also includes videos and information from physicians, nurses, and other experts in the field.

This article was originally published in Coping® with Cancer magazine, November/December 2011.

Dog Time, Cancer Time

by Dana Jennings

Bijou, like all dogs, runs on primal time. She isn’t constantly barking on her cell and doesn’t stay up late to catch Conan or Letterman. She eats when she’s hungry, drinks when she’s dry, and naps when she’s sleepy. The absolute, very best moment is the one that she’s inhabiting right now – whether stalking a bunny, shredding a sock, or snoring away in a swatch of sunlight. And during and after cancer, I also came to understand that the very best moment is right now.

Cancer, like any dog, insists on its own time, also runs on primal time. If you try to defy it, it can break you, physically and spiritually. So, as I coped with prostate cancer, I took some cues from Bijou. I ate when I was hungry, drank when I was dry, and napped when I was sleepy.

Cancer doesn’t know from deadlines and BlackBerries, from Twittering and overnight delivery. It is analog and organic in a digital world. If you have a Type A personality, you will need to adjust to Type C – for cancer. (Or, even better, Type D for dog.)

I went on Cancer Standard Time the moment I learned, at age 50, that I had prostate cancer.

Each phase of the disease – diagnosis, surgery, radiation, and other treatment – carries its own distinct sense of stepping outside traditional time, its own bitter flavor of dislocation.

I went on Cancer Standard Time the moment I learned, at age 50, that I had prostate cancer. I’d had a biopsy three days before, and I thought I fully understood that the odds were 50-50 that I might have the disease. Yet, I realize now, I secretly believed that I couldn’t possibly have cancer. That only happened to other people.

In the instant that I found out, I felt stuck in time – What? What? What? – like a scratched CD skipping and stuttering in the player. I wondered whether I had heard wrong.

I chose to have my prostate removed, and the three months between the diagnosis and the radical open prostatectomy were a blur. I was swept up in a whirlwind of tests and scans, treatment decisions, and negotiations with my insurer. (They were hostage negotiations, with me as the hostage.) Those days hurtled forward, caught in the gravitational pull of surgery.

In the hospital, time held no meaning. Once I entered that always unsettling time machine of anesthesia, and came out breathing on the other side, I inhabited each hazy post-op moment, not worrying about the past or the future. All I knew was that I could hit the morphine drip every 10 minutes, that I could nap whenever I wanted.

Those three days revolved around the cycles of doing the hospital shuffle, of having my four drains emptied, of having my blood pressure and temperature taken. I didn’t quite know what day it was, and it didn’t quite matter. I was alive. I trusted the date printed on page 1 of The New York Times.

Then life became more complicated.

Nine days after surgery, I received the results of my pathology report. I found out that my probably Stage 1 prostate cancer, which had appeared ordinary enough, was unexpectedly aggressive. It had surged through the prostate and was now classified as a Stage T3B. More treatment was needed.

There’s nothing like a dog to snap you back to the moment.

I used to joke that my goal was to live to 106, making a gradual transition from writer to sage. When I was given my pathology report, I felt all those taken-for-granted decades squirming through my fingers. Age 106? Let’s shoot for 60, or even 51.

But before I could focus on the next phases of therapy – hormone shots and radiation – I had to complete my post-op healing. You have to become healthy before more treatment can damage you again in the name of curing you.

But healing, too, comes in its own time. No matter how hard you push – and pushing isn’t necessarily bad – you have to understand that the cancer and its treatment will push back.

I spent seven weeks recuperating from surgery that summer, and time once again bent in weird ways. It was the first summer I hadn’t worked since I was 14, and I luxuriated in the languors of childhood: comic books and rhythm ‘n’ blues, walks and spontaneous naps, and, of course, my loyal pooch.

As I convalesced, there was a fairytale sense of being outside of time. I half expected to see vines and creepers swaddling my house, as if I were some kind of Sleeping Beauty with a buzz cut. The world’s quaint concerns weren’t my concerns. Obama? McCain? Palin? Oh, if you insist.

That was partly why returning to work that August was so jarring. On the streets of Manhattan I had lost a couple of steps. I felt myself in sharp relief to the frenzy of zoom and zip that characterizes New York. Whenever I tried to push ahead physically, the cancer, the healing, the treatment pushed back, reminded me that, after all, I was still a patient.

It was like a physics problem: If the world accelerates, but cancer makes you decelerate, where does that leave you?

Radiation treatment posed that question even more profoundly. Radiation is exhausting, and I felt as if I had been nudged into an alternate timeline. I kept working, kept up some semblance of a social life. But I also seemed to fall behind. I had somehow traveled outside time, and my frame of mind felt gray and snowy, like some Eastern bloc city of the 1950s.

With Bijou as an example, though, I understood that living in the moment was crucial. But what if you can’t grasp the moment? What if you feel as if you’re living in a no-moment? I sometimes felt like one of those forlorn characters in old-time songs who moan, “Dark hollows will be home.”

But there’s nothing like a dog to snap you back to the moment. Bijou’s cold nose nudging my hand or her warm tongue licking my foot would bring me back to this world, bring me back to myself, like the prince who kisses Sleeping Beauty to bring her back to the here and now.

♦ ♦ ♦ ♦ ♦

Dana Jennings is a prostate cancer survivor, assistant editor of The New York Times Arts & Leisure section, and author of several books, including Sing Me Back Home: Love, Death and Country Music.

Excerpted from What a Difference a Dog Makes: Big Lessons on Life, Love, and Healing from a Small Pooch by Dana Jennings. Copyright © 2010 by Dana Jennings. Reprinted by permission of Doubleday, a division of Random House, Inc.

This article was originally published in Coping® with Cancer magazine, September/October 2011.

Oncology On Canvas^sm Invites People Touched by Cancer to Submit Their Artwork and Narratives

Feel. Create. Share the Hope.

 

Lilly Oncology and the National Coalition for Cancer Survivorship have launched the 2012 Oncology On Canvas: Expressions of a Cancer Journey Art Competition and Exhibition, inviting people diagnosed with any type of cancer – as well as their families, friends, caregivers, and healthcare providers – to express through art and narrative the life-affirming changes that give their cancer journeys meaning.

Oncology On Canvas was created in 2004 by Lilly Oncology as a way to help people touched by cancer cope with the emotional side effects of the disease by telling their stories. Nearly 3,600 people have submitted their artwork and narratives since the competition’s creation.

You don’t have to be an artist or writer to be part of this competition. Telling your story and inspiring others is what’s important. You don’t have to be a cancer survivor to enter, either. Oncology On Canvas is accepting entries from family, friends, and caregivers, as well as healthcare providers. Winners will be selected by an independent panel of judges and will receive a donation made in their name to the cancer-related charity of their choice.

The deadline to register for the competition is April 30, 2012, and all entries must be submitted by June 29, 2012. For more information about Oncology On Canvas and how to enter the 2012 competition – including complete rules and registration and submission forms – visit LillyOncologyOnCanvas.com or call (866) 991-LOOC.

You can also check out the 2010 winners, view artwork from previous competitions, see an exhibit schedule, and watch inspirational “getting started” videos on art techniques, including painting, drawing, mixed media, and photography, at LillyOncologyOnCanvas.com.

♦ ♦ ♦ ♦ ♦

See "Life Becomes Art: Cancer Survivor Awarded Top Prize in 2010 Oncology On Canvas Art Competition" from Coping.

This article was originally published in Coping® with Cancer magazine, November/December 2011.

Creating Caring Connections

Personal Web pages can keep you connected during cancer

 

When you or a loved one is diagnosed with cancer, keeping friends and family updated can be difficult. Repetitive explanations and endless phone calls and e-mails are time-consuming and emotionally draining. Fortunately, many Web services (see below for a list) provide friends, families, and communities with a central hub to keep in touch, stay informed, and share support.

These types of websites can allow you to:

• Communicate with others when you feel up to it. This reduces the burden of having to respond to an overwhelming number of phone calls and e-mails.
• Share the news just once. Sharing health updates can be stressful and time-consuming, especially if you have to tell your story over and over again.
• Reserve your energy for healing.
• Document your experience through blogging, journaling, posting photos, or creating art. These types of creative outlets have been shown to aid in the healing process.
• Keep your personal information private, or viewable only to those whom you choose.
• Easily manage schedules and organize family members, friends, and volunteers. It is often difficult for people with cancer and family caregivers to ask for help. And if help is offered, coordinating family, friends, neighbors, colleagues, and church or synagogue members who do not all know each other can be complex and time-consuming.
• Send and receive messages of encouragement and support.

Staying Connected During Cancer

The following are just some of the many websites where you can keep friends and family connected online during your cancer journey and beyond.

CareCentral
carecentral.com

CareCommunity
mycarecommunity.com

CareFlash
www.careflash.com

CarePages
www.carepages.com

CaringBridge
www.caringbridge.org

Lotsa Helping Hands
lotsahelpinghands.com

MyLifeLine.org
mylifeline.org

Family Patient
familypatient.com

theStatus.com
theStatus.com

♦ ♦ ♦ ♦ ♦

This article was originally published in Coping® with Cancer magazine, September/October 2011.

I'm Alan Landers

You probably know me best as the 'Winston Man.' And ironically, I'm now a lung cancer survivor.

 

I live in Ft. Lauderdale, Florida, and I am 57 years old. I am a professional actor, model, and acting teacher. Over the years, I appeared in various motion pictures (Stacey, Annie Hall), television shows (Ellery Queen, America's Most Wanted) and advertising campaigns (United Airlines, Brill Cream, Winston cigarettes, Tiparillo cigars).

I began smoking when I was nine years old, shortly after my father died. Everybody on TV and in the movies smoked - John Wayne, Montgomery Clift, Natalie Wood; you weren't considered a real man unless you were smoking. The hazards of cigarette smoking had not yet come to the public's attention, and the tagline for Lucky Strike cigarettes was "Lucky Strike, the healthy smoke."

During the height of my acting and modeling career, I was courted by R.J. Reynolds to appear as the "Winston Man." I did the majority of the print ads for the R.J. Reynolds tobacco company in the late 1960s and early 1970s, appearing on billboards and in magazines holding a Winston cigarette and urging others, young and old, to smoke. I was expected to portray smoking as stylish, pleasurable, and attractive.



In this reprint of a vintage poster, former "Winston Man," Alan Landers, promotes the glamour of smoking. If he only knew then what he knows now.

I was required to smoke on the set to achieve the correct appearance of the cigarette ash and butt length. Despite working closely with cigarette company personnel during the shootings, at no time was I ever told that cigarettes could be dangerous to my health.

Looking back on my career, I am ashamed that I helped promote such a lethal and addictive product to the children and adults of this country. Had I understood then what I now understand - that cigarettes are an addictive poison that can kill many of their users - I never would have participated in their mass marketing.

In 1987, the hazard of cigarettes became tragically apparent when I was diagnosed with lung cancer. Although my odds of surviving lung cancer were poor, I was determined to beat them. In a painful and dangerous surgical procedure, my doctors removed a large section of lung, hoping to remove the cancer from my body. After the surgery, I lived from examination to examination, hoping the cancer would not recur.

In 1992, I received the devastating news that another cancer had formed, this time in my other lung. The only hope was more surgery, which was accomplished only with major complications. A nerve leading to my vocal cords was cut, causing it to be almost impossible to speak normally, a crushing blow to an actor.

I am extremely short-winded because sections of both lungs have been removed, and I also have emphysema from cigarette smoking. Scars from the surgery wrap around my back, permanently disfiguring me. In October of 1996, I had open-heart surgery and a double bypass, a residual effect linked to smoking. I feel lucky to be alive and I am hoping for the best.

Since my lung cancer surgeries, I have learned a great deal about the true dangers of cigarettes and the deceit of the industry that sold them. I never understood how lethal the product really is. Looking back, I recall smoking on the eve of my first surgery. I was a strong-willed person, but the addictive power of nicotine is real. My frustration about being unable to quit is shared by many, if not most, regular smokers.

I have donated my time to the fight against tobacco and to protecting children from becoming involved with this dangerous drug. I have addressed the U.S. Senate Democratic Task Force on Tobacco and the Florida Legislature and have appeared numerous times for the American Cancer Society, the Tobacco-Free Coalition, Citizens Against Tobacco, and on national and local television and radio shows. I have committed myself to bringing the message of the real risks involved in smoking to the public, particularly kids.

I call upon the lawmakers of this country to protect our children from this dangerous substance. Tobacco products should be regulated by the FDA as the addictive drugs they are. Tobacco advertising should be eliminated or strictly curtailed. I call upon the tobacco industry to compensate its victims, its former customers, who are suffering and dying from its products.

♦ ♦ ♦ ♦ ♦

This article was originally published in Coping® with Cancer magazine, September/October 2000.

Copyright © 2012 Media America, Inc. All rights reserved.

Coping® is a registered trademark of Media America, Inc. All rights reserved.