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.

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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.

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.”

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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.

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.

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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.

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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.”

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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.

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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.

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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.

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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.

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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.

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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."

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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.

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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.

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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.

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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.

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.

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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.”

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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.

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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.

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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.

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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.

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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.”

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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.

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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.

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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.

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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.

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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.

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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."

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.”

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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.

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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.

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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

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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.

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This article was originally published in Coping® with Cancer magazine, September/October 2000.

Success and Intimacy After Prostate Cancer

A Woman’s Perspective

by Marlys Johnson

My husband, Gary, tells me that men tend to measure their level of success by their jobs, their possessions, and their sexual performance. Men are so shallow. Sigh.

Lost Intimacy
Gary was the data processing manager of a company that sold out to a competitor. He had never been without a good job – had even been courted by headhunters – so we weren’t concerned.

Time passes. Gary dumbs down his résumé. We sell our home and cash out our 401(k). Two years later, he gets a job that pays a fraction of his previous salary. Shortly afterward, his doctor phones: “You have prostate cancer.”

During surgery, tests determine that the cancer has spread to the lymph nodes. Hormone therapy is prescribed. With it come menopausal symptoms – hot flashes, depression, softened muscles, loss of libido – all the things that threaten a man’s maleness.

Gary withdraws. I’m prepared for his lack of interest in sex, but I’m not prepared for what feels like a lack of interest in me.

Not wanting to add to his load, I keep my thoughts to myself. This is just how it is, I reason as I silently grieve the loss of something very precious.

A woman isn’t necessarily looking for a high-level sexual performance; she wants to be romanced and pursued by the man she loves.

For the first time in my husband’s life, the external factors that define success for a man are lost – a rewarding job, the ability to provide nice things for his family, confidence in his sexual performance.

Turning Point
Gary’s doctor promises a break from hormone therapy provided his PSA numbers stay down. The count drops from 44 to 0.90. Two years later, though, it starts an upward trend.

It is a turning point. For the first time, Gary expresses his fears about our financial affairs, about what will happen to me after he’s gone, and how distressing it is to lose his sexual desire. He sends me an email one evening:

There are times I want to talk more, but I know as soon as I say something I’ll start crying.

It seems to bother me more when I see successful people and they talk about their jobs, houses, and vacations. It’s not that I want what they have. It just causes me to feel that I have failed, and that I have brought you down with me.

Female Perspective
When Gary admits his insecurities, it frees me up to share my feelings over the loss of intimacy. A woman isn’t necessarily looking for a high-level sexual performance; she wants to be romanced and pursued by the man she loves.

Romance translates into a hundred thoughtful little things: suggest a date out, flirt with me, pretend you like chick flicks. Let me know you still want me on all levels – as your wife, your best friend, your teammate.

Gary voices a concern that I might compare him in the declining stages of cancer to the successful men I see at work. He fears that I might not want to care for him if he becomes a sick, grumpy husband. “I need your heart to belong to me until the end,” he says.

I cry. This is the man who has loved and provided for me and our children and has kept me laughing all these years. He is the most successful man I know. His character and work ethic are stellar. Our kids have the highest respect for him. Our grandchildren adore him. Most women would give their right arm for this man. (Sorry, girls; he’s taken.)

Knowing that communication is critical to any relationship, I resolve to not keep things to myself. And Gary, who has always been the strong, silent type, admits that the more he talks about cancer, the easier it is to discuss the issues associated with this disease. While I’ve always appreciated his strength, I love this new vulnerability.

As for my heart, it isn’t going anywhere.

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Gary and Marlys Johnson established Cancer Adventures, a nonprofit with a message of proactive survivorship. Marlys published the book Cancer Adventures: Turning loss into triumph, a collection of stories about survivors and caregivers who are giving back, and writes a tongue-in-cheek blog at canceradventures.org. The Johnsons enjoy hiking and snowshoeing in the Cascade Mountains near their home in Bend, OR, and Gary continues to do well on maintenance therapy more than six years after diagnosis.

This article was originally published in Coping® with Cancer magazine, September/October 2011.

Julia Child

A Recipe for the Good Life

by Ellen Jordan

With the same matter-of-factness that she uses to whip up a souffle or create a master dessert, America's culinary legend Julia Child dealt with cancer thirty-two years ago. After finding a rather large lump in her breast, which she describes as "the size of a lima bean," she went straight to her doctor and quickly had it "lopped off." The cancer has never bothered her since.

"With a simple breast cancer, where the cancer is self-contained, it is usually one of the easiest cancers to take care of. I think people are unnecessarily scared with all the media attention about it," Child says with fervor. Since her radical mastectomy in 1965, she has not had "the slightest problem." But even if she did, she would simply deal with it and go on enjoying her life.

And what a life she has. Julia Child, 85, has so deeply influenced our approach to preparing and eating food that she is one of America's most respected icons. Through the years, she has lovingly and painstakingly taught us to appreciate the fine art of good cooking: fresh foods, made-from-scratch recipes, fine French cuisine, and good wine. Because of her, the American eating experience has become a celebration; she has made a good meal one of the happiest and most fulfilling occasions of life. She advocates "comfort food" and reveres good American home cooking, like steak and baked potatoes, fresh salads, and luscious apple pies. And yes, a little pat of butter to enrich a sauce.

With the same matter-of-factness that she uses to whip up a soufflle or create a master dessert, America's culinary legend, Julia Child dealt with cancer.

Child's first book about cooking appeared in 1961: Mastering the Art of French Cooking (co-written with Simone Beck and Louisette Bertholle). She quickly followed its tremendous success in 1962 with the widely-appealing public television series called The French Chef. The program immediately launched her amazing career as America's reigning queen of cuisine. There is no medium that she has not entered over the last thirty-six years to tout the joys of cooking. She co-founded the American Institute of Wine and Food with Robert Mondavi in 1981. Her many television series have included Julia Child and Company, Julia Child and More Company, and Dinner at Julia's and Master Chefs. With the splendid book and video series entitled In Julia's Kitchen With Master Chefs, it is obvious that her influence on world-class as well as unknown chefs is clearly unparalleled. She has graced the cover of Time magazine as "The Lady With The Ladle" and has had dozens of speaking engagements around the world to talk about the wonders of food.

Child has eagerly kept pace with modem communication vehicles to spread her gospel of the good life. Her new CD-ROM entitled Julia Child Home Cooking with Master Chefs has been another tremendous success, and she has even gone online to allow food lovers to cyber-chat with America's all-time favorite chef. She has come into our homes and lives so much to teach us how to enjoy life more that she is like a regular, welcome dinner guest. What a delightful one she has proved to be. Her warmth, down-to-earth attitude, and respect for the gift of life, both in and out of the kitchen, are rejuvenating.

Growing up in Pasadena, California, Julia learned early to love fresh vegetables in great variety, including litchi nuts. She deplores America's current fastidious obsession with fat-free foods and constant dieting. Her recipe for a healthy diet and a happy life is moderation. "You simply have to have a well-balanced diet and eat small helpings. I am a very enthusiastic meat eater. I don't eat lots of butter. You have to do everything in moderation. Eat small portions and eat a variety of foods," she advises. Her mother did not do much cooking. The family had a cook who prepared basic American cuisine. But in 1948, she and her late husband, Paul Child, moved to France, where food is taken very seriously. She enrolled in Cordon Bleu to learn about French cooking because her husband appreciated good food, and she wanted to please him. It opened a new life to her, and she absorbed everything there was to learn about how the French prepare food. It also changed everyone else's approach to food, too.

When asked if she believes diet influences good health, Child quickly advocates a balanced diet for optimum health. She also thinks genetic makeup plays a role in good health. "Your genetic makeup has a lot to do with things. My father's family were tough, pioneer people. My mother's people were from western Massachusetts. All of them had high blood pressure and most died at around age 60. All my father's people lived well into their late nineties. But, we've made tremendous strides in medicine, remarkable strides," she adds. No one in her family had ever had breast cancer, so she did not have a genetic predisposition. She feels lucky to have found the cancer in time to be completely cured and recommends mammograms and self check-ups for all women. "If it's a simple cancer, it can be taken care of simply," she reiterates.

The best advice for women facing the possibility of breast cancer is not to fear, Child insists. "Having a mammography is essential. Back when I had breast cancer, very little was known about it. Mammography is wonderful for finding it early when something can be done about it. If anything feels suspicious, see your doctor and take care of it."

Child also recommends staying busy. After her mastectomy, she returned to work "just about immediately, in two or three weeks." Having a loving family is also important. Her husband was very supportive after her surgery. "He said he didn't marry me for my breast," she says with a laugh. She continues to have regular annual mammograms and check-ups.

In fact, Child says, breast cancer is probably the least lethal of cancers when caught in time. "Of course, it's not nice having your breast removed, but all of this hysteria in the media is awful. People are probably worried needlessly. I am very glad to be fine. I don't do a lot of public speaking about it, but I am always happy to tell my story if asked. It wasn't talked about when I had it. Think of the countless people who could have been saved by early detection."

Child's remarkable common sense approach to everything, from carving a roast to kneading dough, prevails. "I don't like the whole idea of calling someone a 'survivor'. It is a scare word," she says emphatically. "The important thing is do something about it immediately. If you have a questionable mammography, don't delay. Time is of the essence. Don't hesitate."

For the energetic Julia Child, each tomorrow is a very busy day. She is planning more television shows, "TV things" she calls them, and has lots of new writing about cooking to do. Like a carefully-followed recipe, her life yields a concoction of joy.

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This article was originally published in Coping® with Cancer magazine, November/December 1997.

Managing Communication Around Cancer Diagnosis Gives Patients Sense of Control

 

Asserting control over how to communicate — or not communicate — about their illness helps cancer patients overcome feelings of helplessness in a traumatic situation, according to researchers at The University of Texas at Austin.

Erin Donovan-Kicken, PhD, assistant professor of communication studies, and graduate students Andrew C. Tollison and Elizabeth S. Goins, set out to examine the strategies people with cancer use to communicate with family, friends and colleagues, and explore what is meaningful about communication during cancer. Their report, "A Grounded Theory of Control Over Communication Among Individuals with Cancer," is in the August issue of the Journal of Applied Communication Research.

Donovan-Kicken and her colleagues interviewed cancer survivors about strategies they used in managing information about their illness, how they approached conversations about their cancer with various audiences, challenges they faced, and advice they received or recommendations they would make regarding communication around cancer. Research participants also were asked to evaluate existing patient literature on how to talk to family and friends about a cancer diagnosis.

"The very act of taking steps to be protective when communicating about cancer may benefit people because doing so empowers them during a time characterized by so much helplessness."

The researchers found that communication is an important factor in coping with cancer in that it enables people to exert control during a highly stressful and turbulent time. However, despite best efforts to structure and control that communication, cancer patients cannot always predict or control other people's reaction.

"Our study suggests that the very act of taking steps to be protective when communicating about cancer may benefit people because doing so empowers them during a time characterized by so much helplessness," said Donovan-Kicken, who has also studied topic avoidance among breast cancer survivors.

The findings are worthwhile for oncologists and survivor advocacy groups who are counseling patients and designing interventions to distinguish between asking "Are you opening up to people?" and "Do you have people you can talk to if you want to open up?"

Based on this research, patient literature could be refined to emphasize what is meaningful about communication from patients' perspectives, including suggestions on how to manage — and withhold — cancer communication and establish conditions that enable patients to experience their cancer in a way that suits their sensibilities.

Research participants expressed benefits from telling well-meaning family and friends to give them the space to feel ill or fall apart in private, to focus on themselves without needing to support others and to avoid people who were sad or overly solicitous.

Communication as a control mechanism is a double-edged sword, however.

"As hard as one tries to manage their cancer communication, they cannot control the flow of information or predict other people's reaction, which ultimately places limits on survivors' control," said Donovan-Kicken.

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Source: University of Texas at Austin, www.utexas.edu

Coping with the Side Effects of Surgery for Ovarian Cancer

 

Treatment for ovarian cancer usually involves surgery followed by chemotherapy. You may experience physical, emotional, and psychological side effects related to your cancer and the treatment of your specific disease. The key to proactively managing side effects begins with good communication with the healthcare team.

Although your doctor or nurse may not ask you about specific side effects, it is extremely important for you to bring them to the attention of your healthcare team. Often, people under report side effects because they do not want to be viewed as weak or as complaining. Some side effects may be easily controlled or even stopped; others may be more serious in nature and require additional supportive care. Your job is to report the side effects. Your healthcare team will then work with you to help treat and hopefully resolve them.

The best way to communicate to your healthcare team is by providing specific information about bothersome side effects. Keeping a diary is a good way to make sure that information about the side effects that you experience is written down in one place.

Loss of fertility due to surgery for ovarian cancer can be one of the most difficult issues that women face.

Surgery is the cornerstone of most treatment for ovarian cancer. It is important to recognize that some surgical side effects can significantly impact your emotional and physical quality of life.

Loss of Fertility
In addition to dealing with a new diagnosis of cancer, loss of fertility due to surgery for ovarian cancer can be one of the most difficult issues that women face. Women who have not completed childbearing or who have not yet begun to start their families may experience the loss of fertility in different ways. It is important for these women to have strong support systems, such as family members and counselors. Additionally, support groups such as Resolve: The National Infertility Association (resolve.org) and Fertile Hope, a nonprofit advocacy group that tries to improve healthcare and insurance coverage for cancer-related infertility (fertilehope.org), offer resources to help women and their partners.

Surgical Menopause
Surgery for ovarian cancer may result in what is called a surgical menopause. Unlike natural menopause in which menopausal symptoms may occur gradually over time, women experiencing surgical menopause may find that these symptoms are more immediate and profound.

In addition to menopausal symptoms, women need to be aware of the increased risk of heart disease and osteoporosis resulting from the loss of estrogen. Because the decision to use hormone replacement therapy needs to be made based upon a woman’s individual symptoms and health concerns, you should check with your doctor to see whether hormone replacement therapy is right for you.

Other things that you can do to minimize your risk of heart disease and osteoporosis include doing weight-bearing exercise on a regular basis, eating a healthy and balanced diet, and taking calcium supplements.

Sexual Concerns
If you have experienced loss of desire for sex, you are not alone. This is one of the most common sexual problems of women with ovarian cancer. Many women are reluctant to ask their healthcare team questions or mention sexual problems. Gather up your courage and ask anyway! Your healthcare provider can provide information about the possible causes of sexual problems and changes, and may have suggestions for how you can overcome them.

Bowel Obstruction
Bowel obstruction due to surgery happens when scar tissue grows into the intestine, causing the intestine to become blocked. This can result in severe constipation, abdominal cramping, nausea, and vomiting. These symptoms need to be reported to your doctor immediately; he or she will determine whether simple dietary changes might help relieve the obstruction or whether more aggressive medical or surgical interventions may be necessary.

A bowel obstruction can also occur due to involvement of the bowel with tumor. In addition to nausea and vomiting, women with bowel obstruction can also experience severe pain and constipation. Report these symptoms to your doctor immediately. Sometimes a low residue/low fiber diet can help. In other cases, surgery may need to be performed. The decision for surgery will depend on a variety of factors, including how you feel, what your imaging studies look like, the status of your cancer, and how you respond to less aggressive interventions.

Ostomy
Undergoing surgery for an ostomy can be a difficult experience. Whether this change in your life is temporary or permanent, it still takes some getting used to. Most hospitals have ostomy nurses to help people learn about care and management of their ostomy. Check with your enterostomal (ET) nurse to see if he or she knows a person with an ostomy who might be willing to talk with you. Talking with someone in the same situation can often help address your concerns.

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For more information on ovarian cancer, visit the National Ovarial Cancer Coalition at ovarian.org.

Excerpted with permission from Ovarian Cancer: Quality of Life Issues, copyright ©, by the National Ovarian Cancer Coalition

This article was originally published in Coping® with Cancer magazine, September/October 2011.

Caring for a Loved One with Cancer

 

Many cancer patients today receive part of their care at home. People with cancer are living longer, and many patients want to be cared for at home as much as possible. This support is often given by family caregivers, who may be spouses, partners, children, relatives, or friends – anyone who is helping a loved one get through cancer treatment. Today, family caregivers do many things that used to be done in the hospital or a doctor's office. In fact, they play a large role in the health care system in the United States.

Your life will change in many ways when you begin to provide care for someone with cancer. As the patient's needs change during and after cancer treatment, your role will also change, and the entire experience can affect your quality of life. There may be physical and emotional demands from caregiving, and, for some, social and money issues as well.

Cancer patients may need help with many basic activities during the day, such as using the toilet, moving around the house, and changing positions in bed. As you try to meet the physical demands of caregiving, you need to take care of yourself. Some caregivers have found that they don't get enough rest and don't let their own health needs get met. Engaging in healthy habits such as exercise, a healthy diet, and regular medical checkups may keep you from developing health problems or making existing ones worse.

Getting support from health care professionals may help you take better care of your loved one and yourself.

In the beginning, there may be a lot of support from your friends and you may be able to continue working and keep up your relationships. But some caregivers note that as they continue to care for their loved one, the time demands may increase, and friends may call or visit less often. If this happens to you, and if there are problems in your relationship with the patient, your sense of isolation can become a problem, and you may want to seek outside help. On the other hand, the challenges of caregiving can also bring you closer to the patient as you help them cope with the challenges cancer brings.

There are many financial costs of cancer. Families must pay insurance deductibles, copayments, and the cost of services that are not covered by insurance, such as transportation and home care help. Some caregivers give up their jobs and income so they can stay home with the patient, which can make it harder to pay for everything. And financial stress often causes additional emotional stress.

All of these changing circumstances, new feelings, and major demands on your time can be overwhelming. But this is a crucial time to care for your own mind, body, and spirit. Giving care and support during cancer isn't easy, yet many caregivers find that it helps them look at life in new ways. Some have said that it's an honor and a privilege to care for someone they love. You may think more about the purpose of life, and recognize more clearly which people and aspects of life mean the most to you. Looking for meaning can be a way to cope. Other caregivers discover they can be strong during hard times, and develop a better sense of self-worth or personal growth.

Getting support from health care professionals may help you take better care of your loved one and yourself. You can also find support from caregiver groups and cancer organizations, where you can talk with other families. Some caregivers find it helpful to join a support group or to talk to a counselor, psychologist, or other mental health professional. Many people who are active in their faith or spiritual community will find support and resources readily available. Advice about caregiving is available from the National Cancer Institute (NCI) in the booklet "Caring for the Caregiver" and in the fact sheet "Home Care for Cancer Patients". More information can be found at the Coping with Cancer: Supportive and Palliative Care page of the NCI Web site.

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Source: The National Cancer Institute, www.cancer.gov

What I Learned the First Five Years

by Vivian Roe

On March 3, 2011, I hit a milestone that not long ago I never expected I would reach: Cancer Survivor – 5 years.

Still, I can’t say that I feel like I’m out of the woods quite yet, and the physical scars from treatment remind me of that fact. When you had an aggressive, invasive cancer as I did, the schedule of regular screenings, mammograms, ultrasounds can be nerve wracking. And every little spot on the screen sends an immediate (though temporary) wave of fear, even as the doctor says it’s no big deal (but they still need you back in a month for another follow-up).

I accepted that I would never get an answer to the question
“Why me?”

Each day, as I move further away from the day I was first diagnosed, I feel it is an accomplishment. I’ve also managed to learn a thing or two:

♦ Lifestyle choices matter, but attitude matters even more.
We all know that eating the right foods, exercising, and avoiding alcohol and other risky behaviors make a huge difference in your quality of life after cancer. But all of the proper foods and exercising in the world won’t make a dent if your attitude is negative. Good lifestyle choices coupled with a positive and proactive state of mind – that is the winning combination.

♦ Not everyone at risk for cancer gets cancer, and sometimes people with very little risk still get cancer.
By all medical measures, I was at low risk for breast cancer. No family history, no genetic indicators, I was young (relatively, that is), fit, I ate well, rarely drank, exercised often, never smoked. So it was quite a shock when my number was called. On the other hand, I know at least 10 people who are at high risk for cancer, yet year after year passes for them cancer-free.

♦ Acceptance is the only way to keep your sanity.
When you accept that you have cancer, it doesn’t mean that you are happy about it. It just means that you are realistically facing the absolute fragility of life. I was pregnant during my treatment. I had to accept that the little girl growing in me might never know her mom. I had to accept that even if treatment went as planned I’d never breastfeed her and I’d never be able to have children after her. I had to accept that my body would be permanently altered. And I accepted that I would never get an answer to the question “Why me?” When I did this, I found peace. Then I was able to focus on becoming a survivor.

♦ Quality of life is largely up to you.
We each decide what we do with each minute of each day. We choose what we eat, where we go, who we spend time with, how open our hearts are to others. We decide our quality of life by deciding to appreciate and cherish life. Quality of life is not determined solely by physical abilities or disabilities. Quality of life is determined by our state of mind. You can wake up each morning and be grateful for the day. Or you can wake up each morning and loathe the burden of the human condition. It is truly up to you.

Each day I am one day further away from my diagnosis. Each day I am a cancer survivor one more day. I hope that I see many more of these days. But regardless of what the future holds, my first five years have been pretty darn good.

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Vivian Roe is married to Brian and is mom to Elliot, Ethan, and Sophia. In 2007, she founded www.TherapEaseCuisine.com, an online meal-planning service for people with cancer.

This article was originally published in Coping® with Cancer magazine, September/October 2011.

The Role of Spirituality in Cancer Care

 

The terms spirituality and religion are often used in place of each other, but for many people they have different meanings. Religion may be defined as a specific set of beliefs and practices, usually within an organized group. Spirituality may be defined as an individual’s sense of peace, purpose, and connection to others and beliefs about the meaning of life. Spirituality may be found and expressed through an organized religion or in other ways. People may think of themselves as spiritual or religious, or both.

Studies have shown that religious and spiritual values are important to Americans. Most American adults say that they believe in God and that their religious beliefs affect how they live their lives. However, people have different ideas about life after death, belief in miracles, and other religious beliefs.

Many people with cancer rely on spiritual or religious beliefs and practices to help them cope with their disease. This is called spiritual coping. Many caregivers also rely on spiritual coping. Each person may have different spiritual needs, depending on cultural and religious traditions. Some people and their family caregivers may want doctors to talk about spiritual concerns, but may feel unsure about how to bring up the subject.

Some studies show that spiritual or religious beliefs and practices create a positive mental attitude that may help a person feel better.

There is a growing understanding that doctors’ support of spiritual well-being in the very ill helps improve their quality of life. Healthcare providers who treat people coping with cancer are looking at new ways to help them with religious and spiritual concerns.

Serious illnesses like cancer may cause people with cancer or family caregivers to have doubts about their beliefs or religious values and cause much spiritual distress. Some studies show that people with cancer may feel that they are being punished by God or may have a loss of faith after being diagnosed. Others may have mild feelings of spiritual distress when coping with cancer.

Spirituality and Quality of Life
It is not known for sure how spirituality and religion are related to health. Some studies show that spiritual or religious beliefs and practices create a positive mental attitude that may help a person feel better and improve the well-being of family caregivers. Spiritual and religious well-being may help improve health and quality of life in the following ways:

• decrease anxiety, depression, anger, and discomfort;
• decrease the sense of isolation (feeling alone) and the risk of suicide;
• decrease alcohol and drug abuse;
• lower blood pressure and the risk of heart disease;
• help a person adjust to the effects of cancer and its treatment;
• increase a person’s ability to enjoy life during cancer treatment;
• give a feeling of personal growth as a result of living with cancer; and
• increase positive feelings, including hope and optimism, freedom from regret, satisfaction with life, and a sense of inner peace.

Spiritual and religious well-being may also help a person live longer.

Spiritual distress may also affect health. Spiritual distress may make it harder for people to cope with cancer and cancer treatment. Healthcare providers may encourage you to meet with experienced spiritual or religious leaders to help deal with your spiritual issues. This may improve your health, quality of life, and ability to cope.

How Your Healthcare Team Can Address Your Spiritual Needs
Spirituality and religion are very personal issues. People with cancer should expect doctors and caregivers to respect their religious and spiritual beliefs and concerns. People with cancer who rely on spirituality to cope with the disease should be able to count on the healthcare team to give them support. This may include giving them information about people or groups that can help with spiritual or religious needs. Most hospitals have chaplains, but not all outpatient settings do. People with cancer who do not want to discuss spirituality during cancer care should also be able to count on the healthcare team to respect their wishes.

Doctors and caregivers will try to respond to your spiritual concerns, but may not take part in your religious practices or discuss specific religious beliefs. The healthcare team may help with your spiritual needs in the following ways:

• suggest goals and options for care that honor your spiritual and/or religious views;
• support your use of spiritual coping during the illness;
• encourage you to speak with your religious or spiritual leader;
• refer you to a hospital chaplain or support group that can help with spiritual issues during illness; and
• refer you to other therapies that have been shown to increase spiritual well-being. These include mindfulness relaxation, such as yoga or meditation, or creative arts programs, such as writing, drawing, or music therapy.

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Source: National Cancer Institute, cancer.gov

This article was originally published in Coping® with Cancer magazine, September/October 2011.

Cancer Therapy and Your Fertility

by Carolyn R. Kaplan, MD

Cancer Therapy and Women’s Fertility
Each year, cancer occurs in about 113 out of every 100,000 women under age 50 in the United States. Complicating matters, the trend toward delaying childbearing means that many women will not have had children when they are diagnosed. While it is known that cancer therapy can affect a woman’s fertility, fewer than 25 percent of oncologists inform women about their risks and options.

Women who undergo chemotherapy or radiation may experience early menopause. Treatment often results in premature ovarian failure and infertility. However, there are several methods to preserve fertility in women diagnosed with cancer.

Fertility preservation requires individualization. The optimal approach depends upon the type of cancer treatment you received, the time available, your age, your cancer type, and whether you have a partner.

Any woman who has gone through puberty and still has regular menstrual cycles may be a candidate for embryo freezing.

One option includes in vitro fertilization and embryo cryopreservation. In vitro fertilization and embryo freezing can allow you to delay conception until you have completed treatment, even if treatment causes early menopause. This process involves several steps, including hormone therapy, egg retrieval, fertilization of the egg, laboratory development of the embryo, and freezing of the embryo. Frozen embryos can survive for many years, and once you are in remission and ready to use the embryos, the process of transferring the embryos can begin.

Any woman who has gone through puberty and still has regular menstrual cycles may be a candidate for embryo freezing. However, success rates decline as women get older and are best for women younger than 38 years old. Some women may have poor ovarian function even at a young age, but fertility tests can predict success rates. It’s important to note that in vitro fertilization is suitable for women who have partners or who accept donor sperm.

Women who do not have a partner may have the option to freeze their eggs, called oocyte cryopreservation. This new technology has led to live births, but it is still considered experimental and requires a specialized embryology laboratory.

Egg donation is another option. Egg donation allows a woman who has gone through menopause to carry a pregnancy. The process is similar to in vitro fertilization, except that a fertile woman (a relative, friend, or anonymous donor) is given fertility drugs to stimulate multiple eggs to develop. The eggs are then harvested and fertilized with your partner’s sperm, or with donor sperm. The embryos are grown in the laboratory for several days.

You will receive hormone therapy to develop a normal uterine environment, and then the resulting embryos are placed in your uterus. Some women treated with radiation therapy can have abnormal uterine function, so testing is necessary. Hormone therapy is maintained for several weeks, and then pregnancy progresses normally.

Cancer Therapy and Men’s Fertility
Men with cancer have long been able to preserve their fertility by freezing their sperm. Unfortunately, sperm quality is often affected by cancer, and there may be poor sperm quality at the time of diagnosis.

Sperm banking is a great option for men. Most large cities have sperm banks that can freeze sperm. If a sperm bank is not located near your home, you can find sperm banks across the country that can provide long-term sperm storage.

Options for fertility treatment depend on how cancer therapy has affected your fertility, and how normal your semen analysis is after treatment. Options may include artificial insemination with washed sperm if the sperm is relatively unaffected by cancer treatment, or if frozen sperm are available from before cancer therapy.

Insemination with donor sperm can allow conception when there are no sperm present after cancer treatment. If there are any sperm available, even very poor quality sperm or extremely low numbers of sperm, then in vitro fertilization can allow conception. Once the eggs have been harvested from your partner, an embryologist can pick up a single sperm and inject each egg to ensure normal fertilization. Live birth rates are excellent with this procedure and are largely dependent on your partner’s age.

Several viable options are available for cancer survivors who wish to have a family. As the oncology community becomes more aware of fertility preservation options, these will be offered to more people with cancer.

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Dr. Carolyn Kaplan is the director of In Vitro Fertilization at Georgia Reproductive Specialists. She specializes in the initial diagnosis of infertility, the holistic approach to infertility treatment, recurrent pregnancy loss, and egg donation. Visit IVF.com for more information.

Numerous advocacy organizations, such as Fertile Hope (fertilehope.org), are available to help you as you negotiate treatment options in your quest for a family.

This article was originally published in Coping® with Cancer magazine, September/October 2011.

Highlights of the 2011 World Conference on Lung Cancer

Hosted by the International Association for the Study of Lung Cancer

 

The 14th World Conference on Lung Cancer, hosted by the International Association for the Study of Lung Cancer (IASLC), was held in Amsterdam, Netherlands from 3 – 7 July 2011. The program drew together many lung cancer specialists from a wide range of disciplines from all over the world. More than 7,000 participants from over 100 countries joined this unique scientific event. The World Conference on Lung Cancer (WCLC), hosted every two years by the IASLC, is the world's largest meeting dedicated to lung cancer and thoracic malignancies.

EGFR-Targeted Drug Effective for Some People with Lung Cancer
People with advanced non-small cell lung cancer whose tumors have specific mutations in the epidermal growth factor receptor gene lived longer without their disease progressing when treated with the drug erlotinib (Tarceva®) than people who received chemotherapy alone, according to results from a phase III trial.

Other trials have also shown that people whose tumors have EGFR mutations have better outcomes when treated with an EGFR-targeted agent such as erlotinib or gefitinib (Iressa™), which are both tyrosine kinase inhibitors. However, those trials included only Asian participants, and only one trial to date limited enrollment to participants whose tumors had EGFR mutations. The EURTAC trial was the first to enroll people from Western countries (primarily Europe) with advanced non-small cell lung cancer whose tumors had EGFR mutations, explained lead investigator Dr. Radj Gervais of Centre François Baclesse in France.

Participants were randomly assigned to receive, as their initial treatment, either erlotinib or a chemotherapy regimen containing a platinum drug until their disease progressed. Those treated with erlotinib lived a median of 9.7 months without their disease progressing, compared with 5.2 months for those treated with chemotherapy. There was also a very high response rate in the participants treated with erlotinib, Dr. Gervais reported, with 58 percent experiencing substantial tumor shrinkage, compared with only 15 percent of those who received chemotherapy.

As early as the end of the year, Astellas Pharma expects to submit an application to the FDA seeking approval for erlotinib as a first-line treatment in people with non-small cell lung cancer who have EGFR mutations.

High EGFR Expression a Predictor for Improved Survival with Cetuximab Plus Chemotherapy
High epidermal growth factor receptor expression was a good predictor of which people with lung cancer would survive longer when cetuximab (Erbitux®) was added to first-line chemotherapy, according to new research.

Based on a new analysis of all FLEX participants, researchers found that those with high tumor EGFR expression consistently benefited from the addition of cetuximab to chemotherapy, regardless of histology. Within this group, overall survival averaged 12 months, compared with 9.6 months for those receiving chemotherapy alone. In people with low EGFR expression, no difference in overall survival was seen between those receiving chemotherapy plus cetuximab, compared to those receiving chemotherapy alone.

“The new analysis of the phase III FLEX study has allowed us to identify which non-small cell lung cancer patients are most likely to benefit from treatment with Erbitux in the first-line setting,” said principal investigator Dr. Robert Pirker of the Medical University of Vienna in Austria. “By demonstrating that high EGFR expression is the first predictive biomarker for improved overall survival in advanced non-small cell lung cancer, we have taken a major step towards a more personalized approach in this difficult-to-treat disease.”

People with Cancer Who Get Blood Clots Gain No Benefit from Adding IVCF to Fondaparinux
People with cancer who get blood clots – which occur in one of every 200 people with cancer – gain no benefit from the insertion of an inferior vena cava filter to the anticoagulant medication fondaparinux (Arixtra®), according to new research.

The inferior vena cava is a large blood vessel in the abdomen that carries blood from the lower parts of the body back to the heart. A thin-mesh IVC filter can be placed in the inferior vena cava to prevent blood clots from reaching the heart. The study suggests that there is no benefit from costly and invasive IVCF placement in people who are receiving fondaparinux.

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This article was originally published in Coping® with Cancer magazine, September/October 2011.

Exercise Associated with Longer Survival after Brain Cancer Diagnosis

 

People with brain cancer who are able to exercise live significantly longer than those who are sedentary, scientists at the Duke Cancer Institute report. The finding, published the Journal of Clinical Oncology, adds to recent research that exercise improves how people with cancer feel during and after treatments, and may also extend their lives.

Although the study was not designed to test whether regular exercise actually causes longer survival among people with brain cancer, it established a strong correlation that could give doctors and brain cancer survivors a more accurate prognosis of long-term survival. Study participants who reported engaging in regular, brisk exercise – the equivalent of an energetic walk five days a week for 30 minutes – had significantly prolonged survival.

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This article was originally published in Coping® with Cancer magazine, September/October 2011.

Sail Away From Now

by John Kehring

Sail away from now
Steer towards what could be
Slip the mooring
Run free ...

Cast off the mores
Release all those ties
Reach for beyond
Realize your sighs ...

Let go of the past
Treasure its lessons
Be not content to wish
Explore your horizons ...



Bonaire Sailboat, Bonaire, Netherlands Antilles

♦ ♦ ♦ ♦ ♦

Prostate cancer survivor John Kehring, 65, is a photographer, writer, poet, scuba diver and sailor. His love of the sea is often reflected in his poems and photographic art, as is his never-ending hope for the future.

As shown here, John creates his "poetic images" using a camera technique that allows him to insert his own interpretations and impressions into his original photograph. His work is not computer enhanced.

This article was originally published in Coping® with Cancer magazine, September/October 2002.

Music Reduces Anxiety in People with Cancer

 

People with cancer may benefit from sessions with trained music therapists or from listening to music. A new Cochrane systematic review shows using music can reduce anxiety in people with cancer, and it may also have positive effects on mood, pain, and quality of life.

Music and music therapy are used in a wide range of clinical settings. Treatments range from people listening to pre-recorded music, to music therapists engaging people in music experiences to improve psychological and physical well-being. In the review, researchers focused on trials with people with any kind of cancer who were offered music or music therapy sessions.

“The evidence suggests that music interventions may be useful as a complementary treatment to people with cancer."

The researchers analyzed evidence from nearly 2,000 people taking part in 30 trials. Thirteen trials used trained music therapists, while in the remaining 17 trials, participants listened to pre-recorded music. The results show that compared to standard treatments, music reduced anxiety considerably, based on clinical anxiety scores. Some trials reported much larger beneficial effects than others did. The results also suggest that music therapy may increase a person’s quality of life. There was some benefit in music for mood and pain, but not depression. Smaller beneficial effects were seen for heart rate, respiratory rate, and blood pressure.

“The evidence suggests that music interventions may be useful as a complementary treatment to people with cancer,” says lead researcher Joke Bradt of the department of Creative Arts Therapies at Drexel University in Philadelphia, PA. “Music interventions provided by trained music therapists as well as listening to pre-recorded music both have shown positive outcomes in this review, but at this time there is not enough evidence to determine if one intervention is more effective than the other.”

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This article was originally published in Coping® with Cancer magazine, September/October 2011.

November 10, 2011 is Worldwide NET Cancer Awareness Day

 

What is NET Cancer?
What are neuroendocrine tumors? Neuroendocrine tumors (NETs) is the umbrella term for a group of unusual, often slow-growing cancers, which develop from cells in the diffuse endocrine system. They are found most commonly in the lung or gastrointestinal system, but they can also originate in other parts of the body such as the pancreas, ovary, and testes, among other sites.

Why NET Cancer Day? Why a Worldwide NET Cancer Awareness Day?

♦ Because we constantly need to raise awareness of NET cancers among decision makers, health professionals and the general public. Information is key to improving quality of life and prognosis for NET cancer patients; raising awareness is therefore one of our primary goals

♦ Because acting simultaneously in many places and in many countries can ensure the voice of NET cancer patients is heard by more people

♦ Because early detection of NET cancers is a public health priority

♦ Because a day focused on NET cancers can bring hope and information to people living with NET cancers, their caregivers and families

♦ Because we want equity in access to care and treatment for NET cancer patients around the world

♦ Because we need an action that can bring all stakeholders of the NET cancer community together with the same goal

♦ Because we need more funds for research and care, and more research and efforts directed towards NET cancers

♦ Because we need to keep fighting for NET cancer patients

♦ Because we need to coordinate policy actions at national and international levels

Patients are treated on an average of 3-7 years for the wrong disease. Most NET patients are diagnosed when the cancer has already spread. Early diagnosis dramatically improves outcomes.

Theme for 2011

NET cancers are difficult to detect
NET cancers are usually slow-growing tumors that are derived from the diffuse neuroendocrine system. They are found most commonly in the gastrointestinal system and lung, but they can also originate in other parts of the body such as the pancreas, ovary, and testes, among other sites.

People with NET cancers are often misdiagnosed
NET cancers can manifest myriad clinical symptoms, many of which are nonspecific and vague. For example, many carcinoid patients may initially present with nonspecific abdominal symptoms which may lead to an initial diagnosis of Irritable Bowel Syndrome or Crohn’s disease. These difficulties, combined with a lack of knowledge and awareness among the medical profession, mean that NET cancers are often misdiagnosed.

Diagnosis of NET cancers often takes many years
The onset of symptoms takes an average of 3 – 7 years. Patients commonly have to wait months or even several years after presenting with symptoms before a correct diagnosis is achieved. These very long delays in diagnosis can be improved.

Many people are living with undiagnosed NET cancers
Many cases of NET cancers are discovered incidentally during routine operations, like an appendectomy, or from endoscopies and abdominal CAT scans.

NET cancers are increasingly common, yet poorly understood
The incidence of NET cancers appears to be rising worldwide. Each year in the UK alone, more than 2,000 people are diagnosed with a NET cancer. In the US, around 11,000 people are diagnosed each year. This means that NETs are now twice as common as pancreatic cancer. Despite this, many medical professionals have little or no experience with NET cancers.

Early diagnosis improves the NET patient’s outcome and prognosis
Surgery is the only therapy that can cure NET cancers. However, the typical delay in diagnosis, giving the tumor the opportunity to metastasize, makes most NET cancers incurable. NET cancers commonly give rise to secondary cancers, usually in the liver, lymph nodes or bones. A patient with these secondary cancers is more difficult to treat than a patient with only a primary cancer. The 5-year survival of patients with neuroendocrine tumors and liver metastases is 40% compared with 75-99% in those free of liver metastases. Early detection is therefore crucial to the patient’s quality of life and prognosis.

The World NET Community was formed in Berlin on March 10, 2010. We are an independent group whose aim is to raise awareness about neuroendocrine tumors (NETs). Our members include charitable organizations and patient groups from Australia, Bulgaria, Canada, France, Germany, the Netherlands, Norway, Poland, Singapore, Sweden, the United Kingdom and the United States. This community is intended to expand to include new members to broaden the awareness campaign.

♦ ♦ ♦ ♦ ♦

For more information, visit NETCancerDay.org.

November is National Family Caregivers Month

A Proclamation by the President of the United States of America

 

Across our country, millions of family members, neighbors, and friends provide care and support for their loved ones during times of need. With profound compassion and selflessness, these caregivers sustain American men, women, and children at their most vulnerable moments, and through their devoted acts, they exemplify the best of the American spirit. During National Family Caregivers Month, we pay tribute to the individuals throughout America who ensure the health and well-being of their relatives and loved ones.

Many of our Nation's family caregivers assist seniors and people with disabilities to help improve their quality of life. Their efforts help deliver short term comfort and security, facilitate social engagement, and help individuals stay in their homes and communities as long as possible. This heroic work is often done while caregivers balance other commitments to their families, jobs, and communities. As these remarkable individuals put their own lives on hold to tend to their family members, it is our responsibility to ensure they do not have to do it alone.

To ease the emotional and financial burdens that can accompany caregiving, my Administration has striven to support family caregivers for the crucial role they perform. Vice President Joe Biden's Middle Class Task Force has focused on the importance or investing in respite care, counseling, and training for individuals who serve aging Americans. These initiatives would give family caregivers a leg up as they continue to support their aging loved ones.

One of our Nation's greatest responsibilities is to ensure our veterans, their families, and their caregivers receive lasting and comprehensive support. Last year, I signed the Caregivers and Veterans Omnibus Health Services Act, which helps fulfill this obligation by extending additional assistance to family members who care for severely wounded veterans from Iraq and Afghanistan. Our military caregivers exemplify the heroism found not only on the fields of battle, but also in the hearts of those who tend to our wounded warriors when they come home.

As we observe National Family Caregivers Month, we honor the tireless compassion of Americans who heal, comfort, and support our injured, our elders, and people with disabilities. This month and throughout the year, let the quiet perseverance of our family caregivers remind us of the decency and kindness to which we can all aspire.

NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim November 2011 as National Family Caregivers Month. I encourage all Americans to pay tribute to those who provide for the health and well-being of their family members, friends, and neighbors.

IN WITNESS WHEREOF, I have hereunto set my hand this first day of November, in the year of our Lord two thousand eleven, and of the Independence of the United States of America the two hundred and thirty-sixth.

BARACK OBAMA

♦ ♦ ♦ ♦ ♦

Source: The White House, Office of the Press Secretary, at www.whitehouse.gov

Richard Crenna

Reclaiming one of entertainment's greatest voices

by Julie McKenna

When I see Richard Crenna playing various movie roles such as Colonel Trautman in Rambo, Mike Talman in Wait Until Dark, or even the recurring character, Jared Duff, in the current TV show, Judging Amy, I always think about his voice. I don't have to be looking at the TV to know when he is on - his distinguishing voice gives him away, I also think of Walter Denton, the squeaky-voiced kid he played on Our Miss Brooks from 1952 to 1956 (or even Arthur from a 1951 episode of I Love Lucy), and how talented he is to be able to make such a variation in his voice. Since the age of 11 when he was in a radio show called The Boy Scout Jamboree, Crenna has made a career out of his voice, acting in over 100 movies. As I interview him, I find it amazing that he almost lost his voice to thyroid cancer four years ago.

Crenna was filming Heart Full of Rain with Carol Baker and Rick Schroeder in Canada and they were in the cold water every day - which is why he attributed his increasingly husky voice to catching a cold. Thinking it would go away, he started his next project, A Texas Tragedy, but his voice only got worse until he eventually had to see a doctor. The doctor did some tests and said it was just laryngitis and not to worry. But as Crenna told me in the interview, "One of the things you have to understand after having gone through cancer is that nobody understands your body better than you do." He did not want to leave it alone and just hope it went away. For this reason he was persistent about getting tests and he finally had a CT scan showing a lump hidden behind his laryngeal nerve. His regular exam missed it because it could not be detected from the outside. A biopsy of the lump confirmed cancer.

"The thing that was most frustrating for me was having lost my voice and not knowing what to do with the rest of my life."

He continued filming without telling his co-workers because he did not want to burden them with worrying about him. It was not easy though. "I remember one day on the set I had a shouting scene with Angie Dickinson and I was thinking to myself Am I going to be able to say this or not?" He did get through it and scheduled the surgery for just three days following the shoot.



Richard Crenna in character as President Ronald Reagan in his upcoming film The Day Reagan Was Shot.
(photo by Marni Grossman)

Crenna had the surgery but was left with unexpected results. The tumor was connected to the laryngeal nerve and they had to remove the nerve along with the tumor. Crenna recalls, "It paralyzed my left vocal cord so I essentially had no voice. I was little more than a whisper.'" This was devastating for an actor who was basically defined by his voice. Although he was dismayed at having lost his voice, he rebounded quickly. Crenna explains, "The one thing you have to do in terms of fighting this or any illness is to remain positive and not think Oh, my God, I've lost my voice, but rather Oh, my God, I'm alive! Thank God I'm alive."

With this renewed hope and positive outlook, Crenna continued with radioactive iodine - his follow-up therapy, which he calls "the Atomic Bomb." For Crenna this was a simple but frightening procedure. "A man came walking down the hall with this lead vault - he was also in a lead suit. They slid the food to me through the door, and I had to take the pill and be held incommunicado for about 48 hours because my radioactive count was so high. Everything I brought with me - my toothbrush, magazines, and books - were all nuclear waste and had to be thrown away." He was fortunate to have no side effects from the iodine.

After his treatment was over, Crenna recalls, "The thing that was most frustrating for me was having lost my voice and not knowing what to do with the rest of my life." Facing his unknown future, Crenna found courage through the support of his family. His wife, Penni, and three children, Seana, Richard and Maria, were instrumental in helping him stay positive and proactive. With this encouragement from his family, Crenna found Dr. Gerald Berke at University of California Los Angeles and scheduled a visit. After Dr. Berke examined Crenna, the doctor told him that he would get his voice back. Surprised, Crenna asked "When? In six months, a year, two years?" Dr. Berke astonished Crenna with the reply, "When you get off the operating table."

Having nothing to lose and his voice to gain, Crenna scheduled the surgery. Crenna remembers with a laugh, "One of the brightest days of my life was to awaken in the recovery room and look up to see my family standing there and say 'I'm fine.' I really could say it. I still have a paralyzed left vocal cord and what you're hearing is my right vocal cord working its tail off. I have almost what I would consider my normal voice back. I used to do a lot of cartoon voices and some of those things I can't do, but the fact that I can communicate and we can sit here having this interview is a triumph of modem medicine."

In a twist of fate, Crenna was the spokesperson for the American Cancer Society in 1965, having lost his mother and several friends to cancer. "I felt that if it was something I could do to make a contribution I was more than willing to be helpful, never thinking that 30 years later I'd be the recipient of some of the advances that were made in cancer research."

Crenna believes that one of the things that has helped him through many difficult situations is his sense of humor. He has the ability to find humor and a positive side to just about anything. Crenna adds with a laugh, "When people would question me about how it was to not have my voice, I told them it was very upsetting because living here in southern California, it's very difficult to have road rage when you can't lean out the window to yell at somebody."

One phenomenon Crenna experienced while having cancer was the different reactions he got from friends. "Some people who were very close friends were not able to deal with it and almost disappeared," Crenna remembers, explaining that many people see their own mortality in a friend who has cancer and it frightens them. "Other friends that were only casual friends were very solicitous. You do have different kinds of support and you have to understand that it's very difficult for people to face this. One of the things you have to do as a survivor is to understand this about other people. And forgive them for it. Then when you do regain your ability to associate with them again, they all come back to you with a stronger bond somehow."

When I ask Crenna if he would do anything differently, he quickly responds, "I don't believe so. I was very confident in my physicians." He suggests that everyone with a cancer diagnosis should not take it lightly. "Get more than one opinion. Get two, three, or four opinions before you have any surgical procedure to comfort yourself that you are in the best possible hands. It's very important to go in with confidence and with a survivor's attitude."

Crenna has always been fortunate and appreciates everything he has, which helped him in dealing with his cancer. He never took anything for granted and always counted his blessings. He explains "It's not just a question of success in business; look at your children and when you see that smile on your little girl's face, think to yourself, How did I get so lucky?"

Now that Crenna is in complete remission, he can concentrate on the future. In addition to his recurring character on Judging Amy, he just finished his role in The Day Reagan Was Shot, in which he plays President Reagan and co-stars with Richard Dreyfuss. It is the story of the 24 hours in history when the attempt was made on Reagan's life. The Day Reagan Was Shot is scheduled for release later this year.

Crenna advises other cancer survivors to maintain the outlook "this is not going to beat me." He explains that many people wonder, Why me? Why not someone else? Although these feelings are common and normal, it is important not to succumb to them. He stresses the most important thing you can do is to "reach out to others and talk about it. Allow people to share your grief. It helps the healing to know that you're not fighting it alone and that there are survivors like me who are there at your side. So many people have come forward and said 'I've had it and I'm living, I'm healthy and I encourage you and pray for you to be the same.'"

Crenna believes the most important lesson to be learned from cancer is "to appreciate life. That's the story I get from most people who have gone through a cancer experience of any kind. To appreciate day-to-day life." In his familiar voice that I remember from his multitude of films, Crenna adds with a chuckle, "You've got to have a good attitude and say, 'This morning I got up on the right side of the grass.'"

♦ ♦ ♦ ♦ ♦

This article was originally published in Coping® with Cancer magazine, May/June 2001.

Lance Armstrong

Fast. Determined. Persistent.

 

Lance Armstrong's ability to focus on a goal has taken him from start to finish, usually ahead of the pack. These characteristics and a proclivity for overcoming challenges prepared this cyclist to face Olympians in Barcelona, professionals in the Tour de France, and testicular cancer.

In 1991, Armstrong was the U.S. National Amateur Champion. The following year, he came in 111th out of 111 in the World Cup Event in Spain. While others might have quit in disgust, Lance remained undaunted. "I was dead last," he says about that race, "but at least I finished. About 200 guys started the race and about 80 quit." Back in the saddle again, Lance won a stage in Spain's Tour of Galicia a week later.

If that comeback made 1992 a dynamic year for the young Texan, 1993 was dynamite. In his first year as a professional, Armstrong gathered 10 wins and trained like a race horse, riding 500-600 miles per week in 25-30 hours. During this year, he reached both World and U.S. PRO Championship status, won the Triple Crown, and took Team Motorola into the top five world-ranking teams, a first for the United States.

"I was dead last ... but at least I finished. About 200 guys started the race and about 80 quit."

Armstrong was the 1995 Tour Du Pont Champion, became a Stage 18 winner of the Tour de France, and was named the VeloNews American Male Cyclist of the Year. Lance seemed to hit his stride as he headed into 1996. He repeated his 1995 successes in the Tour de France and the Tour Du Pont, and had signed a two-year contract to race for legendary French racing team director, Cyrille Guimard, when suddenly his life turned upside down.

In a press conference on October 8, 1996, Armstrong announced he had been diagnosed with an advanced form of testicular cancer six days earlier. Doctors at St. David's Hospital had successfully removed the malignant testicle on October 3, but further tests showed the cancer had spread to his abdomen and lungs. During his first cycle of chemotherapy, Lance's medical team consulted with other oncologists at M.D. Anderson Cancer Center and Indiana University, who suggested a brain scan. The results confirmed that cancer had reached the brain.

Although the hospital staff assured Armstrong that his lesions were small and easy to reach, there was no avoiding the fact that he was facing brain surgery. He was told that his chances were less than 50 percent.

Had he known all of this from the beginning, Lance admits he would have been terrified. "It worked out better that I got the news gradually," he says. "The odds I faced were distracting and upsetting but, as bad as they were, I viewed them as a little bit of hope because they could have been worse."

With his eyes on the glass half full, Armstrong entered the biggest event of his life. The young man who had made sport out of precision and endurance was now in the hands of medical professionals who were experts in both.

During six hours of surgery, two silver-dollar sized holes were drilled in the top and back of his head. Electronic technology in the hands of skilled surgeons resulted in the successful location and removal of the virulent cells.

In January 1997, the Lone Star athlete returned to training. Unfortunately, his French team sponsors soon withdrew their support. "I wasn't treated very fairly in that situation," Lance says, "but it just goes to show you how people will react to you and treat you as a cancer patient."

Once again, the comeback kid chose to see this challenge as a detour rather than a stop sign. In October 1997, one year after announcing his cancer diagnosis, Lance called another press conference.

"This past year has been the greatest year of my life," he said, surprising only those who did not know him well. "I have spent most of my time battling for my life." Next, Lance took time to thank family members, friends, business associates, sponsors and fans. "Thank you for believing in me, and continuing to support me in my darkest hour," he said.

Finally, Armstrong announced his decision to ride for the U.S. Postal Service Professional Cycling Team in 1998. "I am extremely excited to be riding not only for an American team, but for one that has stepped up and shown me that they truly believe in my ability to stage a comeback in professional cycling."

Supporters can follow Lance Armstrong's progress by visiting his website at www.lancearmstrong.com. The website includes detailed information about Lance's career, his current training program, the Lance Armstrong Foundation, and the May 23, 1998, charity event, Ikon Ride for the Roses.

Fans who have followed Lance Armstrong since he won the Iron Kids triathlon at 16 will find a different competitor in the peloton. He is still fast, determined and persistent. But he no longer lives to race. He races to live.

♦ ♦ ♦ ♦ ♦

Read more about Lance Armstrong and the Tour of Hope™ from Coping® with Cancer magazine, November/December 2003.

This article was originally published in Coping® with Cancer magazine, March/April 1998.

Dr. Jerri Nielsen

Living on the Edge of the World

by Julie McKenna

While some people go to Antarctica to ski on the pristine blankets of snow, Dr. Jerri Nielsen went there because it was the last true frontier. She would be the only doctor stationed at Amundsen-Scott South Pole Station for the year 1999. For eight-and-a-half months of that year, there would be no travel in, or out due to harsh weather conditions. Since she was a young girl she had always wanted to travel to areas that were still uncharted - Antarctica or even the moon if that's what it took. Now, she finally had her chance to make her dream come true. What she didn't know was that she would develop breast cancer while trapped at the end of the earth. She has documented her amazing story of survival in her new book Ice Bound: A Doctor's Incredible Battle for Survival at the South Pole.

Jerri had been working as an ER doctor in Ohio and living with her parents while she was recovering from her divorce after 23 years of marriage and losing her three children in the process. She was ready for a change - a big change. One night after work she saw an ad in a medical journal for a doctor at the South Pole. "I believe in geographic cures," Jerri writes. "They allow you to throw all your cards in the air and see where they land." This was what she had been looking for.

"Antarctica was a blank slate on which you would write your soul."

As with all major decisions in her life, she sat down to discuss it with her family - her mother, father and two brothers. Everyone was excited about the adventure and encouraged her to follow her dreams. Her father, who they lovingly call "Look-Out Cahill" because he is always warning the family to be careful, did mention that it might be dangerous. He even mentioned the fact that as the only doctor there, she might have to operate on herself. But, having warned her of the potential danger, he also encouraged her to go. With her family behind her and her mother's advice on her mind, "Get on with life, have the best one that you can imagine. A life is not just measured in years," Jerri decided to do it. She applied to the Antarctic Support Associates (ASA) in Denver and a few days later was on a plane to Denver for the interview.

During her interview she was given the lowdown on Antarctica that, as Jerri notes, "came across as a warning." The ASA informed her that Antarctica was "the highest, driest, coldest, windiest, and emptiest place on earth." This was confirmed when she asked the human resource office to have survival training before she left. They told her, "You don't get survival training when you're a Polie. If you end up outside in the night, you die." Jerri was sold.

In what seemed like no time, Jerri was at the South Pole after a few stops to collect government issued gear that was specifically made for the Antarctic weather. When she stepped off the plane she was hit with "a cold so deep and complete it was surreal. My first breaths torched my throat and chilled my lungs. It was a cold from another dimension, from an ice planet in a distant galaxy," Jerri had finally made it to her uncharted frontier.



The South Pole crew discovers the sixth box from the emergency airdrop on July 10, 1999.
(photo by John Penney)

The first few weeks were spent adjusting to life at the Pole, from learning to take a two minute shower only twice a week to closing up cuts with superglue. Jerri was actually looking forward to the last plane of the summer leaving so that she could settle into the winter routine - she had fallen in love with the South Pole. Jerri discovered that "Antarctica was a blank slate on which you would write your soul."

A few weeks after the last plane left, leaving Jerri and her winter crew on their own for eight-and-a-half months, Jerri found a lump in her right breast. She had a mammogram only six months prior that did not indicate anything unusual. After monitoring it for several weeks, Jerri told the rest of the Polies about the lump because it was growing larger. She tried to aspirate the lump thinking that it might be a cyst, but it proved to be solid.

After consulting with a medical team in the United States, Jerri decided to do the unthinkable: perform a biopsy on herself. Jerri gave a crash course in performing a biopsy to the small team of people she chose to help her. Among them was a welder who she had practice on a piece of fruit. As to whether or not she was nervous about performing the biopsy, Jerry simply states, "No. I wasn't."

The next step was to somehow get the slides of the biopsy to the medical team in the United States. Since they were shut off from any contact, they did not have a way to get the slides out of the South Pole. The team of Polies came up with an innovative way to transmit the slides over e-mail. The medical team in the United States received the slides and was able to come to a conclusion. When Jerri got the results, her greatest fear was realized: it was cancer.

Not only was Jerri's life at risk, but so were the lives of everyone else at the Pole who depended on her as their doctor. Taking this into consideration, the National Science Foundation (NSF) decided to risk an emergency drop of chemotherapy drugs and other supplies Jerri would need to begin treatments. On July 10, 1999, the Air Force C-141 Starlifter delivered the precious cargo to the South Pole without a major incident. The only mishap was that the ultrasound machine in one of the boxes was smashed on impact.

With the help of her fellow Polies, Jerri began chemotherapy treatments, which made her hair fall out, and she felt like she was "walking neck deep in Jell-O." She switched to the backup chemotherapy drugs after her tumor started growing again. Jerri endured side effects brought on by a combination of chemotherapy and living in the environmental conditions at the Pole. "I couldn't think. I was forgetting everything and getting confused," Jerri recalls. "And I started dropping things with my right hand." It was clear that Jerri needed to get off the Ice and be replaced with another doctor.

The NSF planned to send a rescue plane to collect Jerri and replace her with another doctor. On October 16, 1999, the 109th Airlift Wing of the New York Air National Guard successfully accomplished this seemingly impossible task. They only had three minutes on the ground to get Jerri and drop off the other doctor.

After Jerri came back from the South Pole she had a lumpectomy, which created an infection that ran down her arm and into her chest. She also developed a staph infection and in November 2000 had a mastectomy.

Now as I interview her a few months after her mastectomy, she is thriving. Between appearances' on programs such as Primetime and Oprah, she is doing a book tour across the United States. She is feeling well and is recovering quickly, but jokes about being exhausted from her busy schedule.

Looking back at her experience in the South Pole, Jerri says that cancer is harder on the caregivers than it is on the person with cancer. "The person who has cancer goes through a period of time when she can mourn her illness," Jerri explains to me. "But the people who love her and are caring for her feel helpless a lot of the time. They feel like they can't do enough and become fatigued from having to care for her." Jerri also adds with a laugh, that when you are the one with cancer, everyone gives you a break.

Jerri beams about the support she received from her fellow Polies and her mother, father, and brothers. "I don't think that cancer is the worst thing that can happen to you," Jerri contemplates. "The worst thing would be being alone and feeling unloved and uncared for." Cancer has enriched her life in ways that she would never have imagined. "I've made so many friends because of it!" At first, Jerri was apprehensive about attending support groups because she felt like it meant she was giving up hope. "Now I go to all of them! I get to meet people and I just love them," laughs Jerri.

Jerri writes of Antarctica, "The first year you come for the adventure. The second year you come for the money. The third year you come because you don't fit anywhere else." When I asked her about how this applies to her, she pauses and then responds, "I still don't fit anywhere, but I have come to like the world again." Living at the Pole was an easy, simple life that Jerri knows she can never return to. She will figure out how to get the same peace she felt at the Pole here in the "real world."

Just as dreams of traveling kept her spirits up at the Pole while undergoing chemotherapy, Jerri still wants to travel. "I want a very full life," she says thoughtfully. "But my first goal is to get back into medicine after I get back from this book tour." Undaunted by the uncertain future that faces her, Jerri declares, "Being on the edge makes life sweeter." If anyone knows what living on the edge is like, it's Dr. Jerri Nielsen.

♦ ♦ ♦ ♦ ♦

Dr. Jerri Nielsen's book, Ice Bound: A Doctor's Incredible Battle for Survival at the South Pole, is published by Talk Miramax Books.

This article was originally published in Coping® with Cancer magazine, March/April 2001.

Tony Dow

Actor, Director, Prostate Cancer Survivor

by Julie McKenna

From his memorable role as Wally Cleaver in the Leave it to Beaver television series to starring in the theater production of Barefoot in the Park, Tony Dow has had a distinguished career in show business. He has found success not only in acting, but also in writing, producing and directing. Tony's most challenging role recently, however, has been that of surviving prostate cancer.

For over three years, Tony had an elevated PSA and monitored it closely over the course of several doctor appointments. In October 2000, he was diagnosed with prostate cancer and was faced with a difficult decision. He chose to have surgery, with no radiation or chemotherapy, and has been cancer free since then.

Tony wisely did extensive research before his operation to make sure that he understood his options.

"After the surgery I went in every three months for a check up and now I'm going in every six months," Tony says. "So far everything looks good and I don't have any side effects from the surgery. My stomach muscles took some time to recover but I feel great now."

Tony wisely did extensive research before his operation to make sure that he understood his options. He and his wife, Lauren, read as much as they could find and talked to several doctors. "Check out what all of your options are, make a decision, and then stick to it. Don't cause yourself stress by worrying if you made the right choice," Tony advises.

Tony credits the support of his wife and family with his successful recovery. They were there for him when he had to make tough decisions and while he was undergoing surgery. "Family and friends are the first priority in my life," Tony says.

Throughout his 40 years in show business, Tony has been involved in nearly every aspect of movies, television, and theater. For now, Tony is concentrating on spending time with his family and working on various documentary projects.

♦ ♦ ♦ ♦ ♦

This article was originally published in Coping® with Cancer magazine, March/April 2003.

Robert Goulet

A Powerful Voice of Joy

by Ellen Jordan

Far from the dreamer Don Quixote de la Mancha, Robert Goulet is a doer. When he learned he had prostate cancer in 1993, his first command to doctors was to quickly "get it out!" Now four years later, he has little time for thinking about it. "It's over with," he says in the powerful voice that has captivated us from stage, screen, and recording for almost half a century.

Goulet's cancer was discovered because of a rather "fluke thing." He was performing in the musical South Pacific, and his producers requested that he have a physical exam as a routine process for ensuring the good health of performers during the run of a show. "PSA was not in their lexicon," he says with a laugh. He had never had a PSA test before and took the simple blood test as part of the physical. His test result readings were between three and four. "Doctors said it was safe, nothing to worry about. Thirteen months later, I had another and it was between seven and eight. Then five months later, it was between twelve and thirteen. So it went up pretty fast," he recalls. Doctors then ordered a bone marrow test, MRI, culture, and other tests which confirmed that he had prostate cancer. "I was surprised of course," he remembers. "It was a disease for old men. But I didn't worry, I simply said, 'take it out.'"

After receiving two medical opinions after his diagnosis, which Goulet strongly advocates, he decided on a prostatectomy, the surgical removal of the entire prostate gland. He did not choose radiation-only options because of the possibility that the treatment might be debilitating and keep him from scheduled performances. By then, he was beginning the revival of the role of King Arthur in a national tour of Camelot. "My producer wouldn't give me any longer than three weeks' recovery time," he says. Since he was used to the show going on no matter what else happened, he made up his mind to recover quickly. "It helped. I had a sense of humor, a desire to get better swiftly, and a positive outlook."

He determined that nothing like cancer was going to stop him.
And it didn't.

Camelot opened on schedule in Los Angeles just three weeks after Goulet's surgery. During the song "I Wonder What The King Is Doing Tonight," Goulet remembers a traumatic moment: "When you sing a high note, you have to push your whole body down. As I pushed, I felt a little spurt. I thought, was that a big spurt or a little one? If the audience saw it, I thought, who cares, there's nothing I can do. While walking off the stage with Patricia Keys, who played Guinivere, I asked her, 'On that high note in the last song, did you see the twinkle in my eye?' She replied, 'When I saw the twinkle in your eye, I knew there was a tinkle down your thigh.'"

Goulet's amazingly quick recovery is a credit to his determination. In a prostatectomy, the surgeon must cut through either the abdomen or the region behind the scrotum to reach the gland. It is major surgery, usually involving weeks of recovery, with the patient attached to a catheter. Because the little walnut-size prostate gland surrounds the urethra, the tube through which urine passes from the bladder, it may affect the sphincter muscle that controls the flow of urine. As a result, there is some risk of incontinence. Experts say about 1 to 2 of prostatectomy patients have complete lack of urinary control, and from 20% to 50% of men will have partial control and stress incontinence or leakage caused by physical pressure. More than half will have minimum leakage of a few occasional drops. Many of these men will regain control, but for some, pads or diapers become staple wardrobe items.

"My wife Vera was very brave," he says laughingly. "The first night we weren't sure if I would be, but I have never been incontinent from the start."

For Goulet, first hearing the diagnosis of cancer was startling. He was 60 years old, vibrant, healthy, and energetic. He determined that nothing like cancer was going to stop him. And it didn't. His family gave him love and support during the surgery and recovery and cheered him on as he took center stage only three weeks after surgery. Goulet and Vera, a Macedonian-Yugoslav native, have been married since 1982, and are partners in marriage and in business. Vera runs their company, Raga & Rove, and is also Goulet's business manager. "She travels with me, runs the house, office, and me," he says proudly. His three children are sons Christopher and Michael and daughter Nicolette, who is the mother of his grandson, Jordan Gerard, and granddaughter, Solange. Their reaction to hearing their father had cancer was that he would take care of it and get well. "They think their father is made of steel," Goulet says. Naturally, they knew he would quickly be well and back on stage performing. There is really no other place that Goulet has been during his extraordinary life. He first sang for a family gathering at age five, but experienced such tremendous stage fright that he was fearful of any future performance before an audience. His devoted father, Joseph Goulet, encouraged him. Before Joseph died, he urged Robert to continue performing and sharing his God-given talent with the world. He has done that ever since.

After Joseph's death, Robert and his mother and sister moved from Lawrence, Massachusetts, to Canada, where he made his first professional appearance at age 16 with the Edmonton Symphony Orchestra. He was later awarded a singing scholarship to the Royal Conservatory of Music at the University of Toronto. He appeared in scores of theatrical productions and on numerous radio and television shows until he became host of a weekly network variety show called General Electric's Showtime.

Broadway soon beckoned, and he set off on an odyssey that has brought him fame and success around the world. When he debuted as Sir Lancelot in the original Broadway 1960 production of Camelot, he wowed audiences with his powerful voice and dramatic presence. He later received the prestigious Theater World Award. Goulet became one of American theater's most charismatic and talented musical stars in its history. His stage success was followed by more than sixty best-selling record albums, international concert appearances, motion pictures, television specials, guest appearances, and his own popular television series, Blue Light. In 1968, he won a Tony Award for best actor for his role in The Happy Time. He is also a Grammy award winning recording artist and has over 60 top-selling albums worldwide.

In 1986, he pioneered the movement to bring original Broadway stage productions to audiences around the country. Productions of South Pacific and Camelot became the most successful National Tours of all time and broke all box office records across the nation. In 1996, he toured with Man of La Mancha and thrilled audiences with his portrayal of Don Quixote.

Now that he has fully recovered, Goulet follows no special diet or exercise regimen to stay healthy. "I exercise two hours on stage every night, that's enough" he says. He talks about his experience with cancer to give others courage and has been interviewed by major networks, including CNN's Larry King Live. Michael Milken, also a prostate cancer survivor, warned him not to eat cheese. "No cheeses. Not even soft cheeses. But I didn't cut out cheese," Goulet chuckles. He did cut out butter, eats red meat only once a month, and sticks to chicken, fish and pasta in his daily diet.

To those who are afraid of prostate cancer, Goulet offers advice with calm certainty. "There is no need to be afraid. They can tell if it's spread or not by the tests, so you know if there is a long road ahead. It is actually a slow growth thing. I think there should be more awareness of early detection. It should be as popular to people in their thirties to get PSA tests as to any age group. Get it every year - it may save your life!"

To the hundreds of fans who have written him letters of encouragement, Goulet tries to answer each one. He is not afraid of death or of anything the future holds: "We're all going to die. If it's now, it's God's will," he says with no doubt. "We don't need to be afraid." He starts rehearsal next spring for Henry's Wives, a play about the rogue king, Henry the VIII, and will tour all over the country for a year. Sadly for audiences, his days as King Arthur are over. "Camelot is fini," he announces. "It received rave reviews, but we are not going to do it again." Goulet is appreciative of constructive criticism about his performances. He admits to reading them, even if only "for laughs." When they are not traveling with a production, the Goulets enjoy their beautiful "oasis" in the desert of Las Vegas. They are adding on to their house, though they would eventually like to live by the sea. Off the road, he hits a few golf balls and reads for leisure.

His philosophy of life is constant: "Always look forward. Enjoy the past, learn from it, but always look forward." Life is good for Robert Goulet, and he appreciates his journey. He is intelligent, energetic, and humble. He is one of whom King Arthur spoke to Pelly in Camelot, in the great blue motion of the sunlit sea, "it seems that some of the drops sparkle ... some of them do sparkle."

♦ ♦ ♦ ♦ ♦

This article was originally published in Coping® with Cancer magazine, November/December 1997.

Cindy Crawford

Helping Cancer Caregivers find Strength

 

Model Cindy Crawford, a dedicated cancer advocate who understands first-hand the toll that cancer caregiving can take on individuals and families, is teaming with Ortho Biotech Products, LP. to encourage participation in Strength for Caring™, a national education and support program for cancer caregivers.

The Strength for Caring program offers workshops across the country in conjunction with local hospitals, healthcare facilities and cancer centers, and online resources at www.StrengthForCaring.com.

"It was extremely difficult for my entire family when my younger brother was suffering from leukemia," says Cindy. "My mother was his primary caregiver, but we all were deeply affected by the emotional and physical tolls of cancer caregiving," adds Cindy, who ultimately lost her brother to the disease.

"My family was not fortunate enough to have the support of a program like Strength for Caring when my little brother was ill - we faced the tough challenge of caregiving alone," she continues. "Now caregivers can get the help they need from the Strength for Caring program, which provides support, empowerment and practical coping mechanisms for cancer caregivers."

According to the National Family Caregivers Association, 54 million adults, or 26.6 percent of the U.S. adult population, provide care for an elderly disabled or chronically ill relative or friend.

Strength for Caring workshops are conducted by accredited nurses and social workers, who undergo formal training to facilitate the programs, and are attended by people with family members or loved ones with cancer. The program curriculum includes a range of topics and addresses the needs of caregivers by helping them to:

• Understand cancer and its treatment,
• Manage common symptoms such as fatigue and pain,
• Meet the physical and emotional needs of people with cancer,
• Deal with changing family roles, and
• Improve their own physical and mental health.

Strength for Caring sessions focus on ways to improve care at home and teach valuable problem solving and communication skills. During the workshops, caregivers are encouraged to share their experiences in order to learn from each other, and sessions are tailored to address the concerns of the group. In addition, facilitators provide a variety of local and national resources to ease the challenges of caregiving. With an enhanced understanding of cancer and knowledge of available resources, caregivers are able to provide better care to the person with cancer, themselves and their families.

Over the years, the role of the family caregiver has changed significantly to include providing advanced care in the home. In fact, after discharge from the hospital, many people continue to receive complex treatments, such as home-administered chemotherapy, intravenous therapies and elaborate post-surgical care.

According to a study conducted by the National Family Caregivers Association, 54 million adults, or 26.6 percent of the U.S. adult population, provide care for an elderly disabled or chronically ill relative or friend. Caregivers often risk their own health status while dedicating themselves to the health and well-being of another. Community-based education and support for caregivers helps to relieve the stress of this demanding role .

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This article was originally published in Coping® with Cancer magazine, September/October 2002.

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.

Roger Ebert

Cancer took his ability to speak, but it could never take his voice.

by Laura Shipp

When America’s movie critic Roger Ebert was first diagnosed with thyroid cancer back in 2002, he anticipated a simple surgery with a quick and complete recovery. And that’s what he got.

Until his cancer returned. This time, in addition to numerous radiation treatments, Roger underwent surgery to remove cancerous growths from his salivary glands in 2003 and later his jaw in 2006. Unexpected complications from this last surgery, and subsequent failed attempts at facial reconstruction, left him without a lower jaw – unable to eat or to speak.

It’s easy to see how anyone would be devastated after having endured as much as Roger Ebert has during his long, arduous fight with a cancer that almost took his life. But that’s not Roger’s way.

Though he hasn’t been able to speak since 2006, Roger has never stopped communicating – or critiquing. In the beginning, he spoke through Chaz, his wife of nearly 20 years, using a rudimentary type of sign language only the two of them understood. He now uses special text-to-speech software, old-fashioned pen and paper, and of course, the magic of the Internet to get his words across.

“By throwing myself into the Internet, I found a new way to communicate.”

It is through a series of email conversations that I am able to interview Roger for Coping® magazine. Here, he opens up about how he is able to hold on to his optimism despite the challenges he still faces.

Your battle with cancer has been an undeniably difficult journey. What aspects of this experience have you found the most challenging?
During the course of my recovery from three surgeries, it became clear to me that I would not speak, eat, or drink again. This realization didn’t happen all at once, but it changed everything in the way I lived. Luckily, as a film critic I could still see movies and write about them, so I resolved to go right ahead and do that. I also started a blog (blogs.suntimes.com/ebert). By throwing myself into the Internet, I found a new way to communicate.

Despite everything you have been through, you still exhibit so much joy. How have you been able to maintain your optimism?
I don’t have pain, and since 2006, at least, I have been cancer-free. Those are two excellent reasons for joy! It helps that I am supported by a loving wife and family, and that I love my work.

Do you have days when you are sad, when you miss the life you had before cancer?
Yes, but I throw myself into the moment. I keep busy. I review 250 movies a year. I read. I don’t sit around and brood.

Tell me about your relationship with your wife, Chaz. What has it meant to you to have her by your side through everything?
It has made all of the difference. She was there every day for me. How could I have gone through this alone? In the hospital, when I was ready to function again, she brought a DVD player and a new movie she thought I might like (The Queen), and I felt compelled to review it. Then I was back in business.

How would you complete this sentence? Having cancer has taught me that ...
Having cancer has reminded me of something I once heard, that if we don’t die first of something else, we will all die of cancer. We can, however, fight it and hope to have more happy and productive years. We haven’t been singled out.

Cooking with Roger Ebert



One thing I did while recovering, oddly enough, was to write a cookbook [picured left]. Although my own cancer was apparently caused by childhood radiation treatments, I believe good nutrition can help the body defend against cancer. By that, I mean a plant-based, whole foods diet, very low in fat and animal protein. My cookbook, The Pot and How to Use It, is about how anyone with no cooking skills and a few square feet of space can easily prepare inexpensive and healthy meals. — Roger Ebert

♦ ♦ ♦ ♦ ♦

This article was originally published in Coping® with Cancer magazine, September/October 2011.

Spirit and Body

by Anita F. Bott

My body wants to sleep all day,
all night, and sometimes more.
My spirit sometimes goes along
and vibrates to the snore.

But oftentimes my spirit begs
my body to wake up.
“We’ve got so much adventure STILL
between the two of us.

“I jumped into this body
not only just to learn
but to run and jump and play –
and more and more I yearn

“to ride around and laugh and joke
and sing life’s melodies
and hold some hands and walk some trails
and jump waves of the sea.

“I want to hold my children close
and feel my spouse so near.
I want to be there for my friends
and face some of my fears.

“I want to stare at beaming stars
and little ants and birds
and feel the leaves between my hands
and smell the lavender.”

“But, spirit,” answered my body,
“we’ve done these things, my friend.”
“But, body,” my spirit answered back,
“I want to do them all again.”

♦ ♦ ♦ ♦ ♦

Anita Bott was diagnosed with oligodendroglioma over two years ago. She underwent brain surgery and radiation and is currently in stable condition. Anita is the author of the picture book A Cookie for the President, published by Greene Bark Press.

This article was originally published in Coping® with Cancer magazine, September/October 2011.

Addressing Sexual Function After Breast Cancer Therapy

by Shari Goldfarb, MD, Jeanne Carter, PhD, and Maura Dickler, MD

The majority of women with early-stage breast cancer will become long-term survivors. Therefore, increased attention to quality of life and symptoms should occur both during treatment and throughout survivorship. Common breast cancer treatments of chemotherapy and endocrine therapy may induce menopause in premenopausal women, resulting in hot flashes, increased vaginal dryness, itchiness, pain with vaginal penetration or gynecologic exams, changes in sexual response, decreased sexual interest, and recurrent urinary infections.

Aromatase inhibitors, such as anastrozole (Arimidex®), letrozole (Femara®), and exemestane (Aromasin®), are used to treat postmenopausal women with early-stage and advanced disease. These medications result in extremely low levels of estrogen, which can also cause urinary symptoms, vaginal dryness, and sexual health issues. An understanding of the potential side effects of each therapy is essential in order to make informed medical decisions about available treatment options.

Common symptoms experienced by women with breast cancer include hot flashes, vaginal dryness, decreased sexual interest, pain with intercourse, and difficulties with orgasm.

Sexual dysfunction is a consequence of breast cancer treatment that profoundly affects the lives of both premenopausal and postmenopausal women. Sexual difficulties can be attributed to multiple factors, consisting of physiological (menopause), psychological (anxiety/ depression), and interpersonal (your relationship with your partner) components. If you are experiencing any sexual side effects from your treatment, you should discuss them with your doctor. Sexual side effects of breast cancer treatment can be treated with a myriad of techniques.

Over-the-counter vaginal health products can be used to address sexual side effects in women treated for breast cancer. These include water-based lubricants, silicone-based lubricants, and vaginal moisturizers.



Dr. Jeanne Carter

Water-based lubricants, such as K-Y Jelly and Astroglide, can improve dryness, increase comfort with sexual activity, and decrease pain with intercourse. They are also safe to use with latex condoms. Silicone-based lubricants, such as K-Y Intrigue and Eros Body Glide, have all the benefits of water-based lubricants and are longer lasting. Vaginal moisturizers, such as Replens, K-Y Liquibeads, and Vitamin E, are suppositories that hydrate the tissues when inserted into the vagina and assist in improving dryness, itchiness, elasticity, and irritation. However, it is not uncommon for women to need to apply vaginal moisturizers at least three to five times per week, and you must use them regularly to realize their full potential.

Counseling and sex therapy can also be effective treatment options. They can help women understand the impact of treatment on sexuality, increase sexual knowledge, reduce fear about intimacy, learn strategies to address pain, promote vaginal health, expand the sexual repertoire, and promote positive sexual identity.



Dr. Maura Dickler

Some studies suggest strengthening the pelvic floor and increasing blood flow to the pelvis may be helpful in improving arousal and may have possible restorative effects. Strategies for addressing pain and promoting pelvic floor health in women with breast cancer include dilator therapy, pelvic floor exercises, and increasing blood flow to the pelvic floor.

Dilator therapy mechanically stretches vaginal tissue. It is used to decrease pain with intercourse or gynecologic exams and to prevent or treat vaginal stenosis and adhesions. Pelvic floor exercises are performed daily to stretch and relax pelvic floor muscles, which improves control and strength of the pelvic muscles. This helps decrease pain with intercourse or gynecologic exams and may improve pelvic blood flow. Increasing blood flow to the pelvic floor may promote circulation and arousal response and may have rehabilitative effects by drawing oxygenated blood into the pelvis. Methods include pelvic floor exercises, vibrators, and self-stimulation.

Estrogens are effective for the treatment of menopause-induced vaginal dryness, but hormone replacement therapy has been shown to increase recurrence rates in women with breast cancer. The safety of intravaginal estrogen in breast cancer survivors is unknown. While it is clear that lowering estrogen levels is ideal in preventing recurrences, the absolute estrogen level to minimize risk is unclear. A clinical trial examining intravaginal estrogen use in postmenopausal women on aromatase inhibitors who are experiencing sexual side effects is currently underway at Memorial Sloan- Kettering Cancer Center.

♦ ♦ ♦ ♦ ♦

Dr. Shari Goldfarb is an assistant attending physician on the Breast Cancer Medicine Service and in the Health Outcomes Research Group at Memorial Sloan-Kettering Cancer Center in New York, NY, and instructor of Medicine at Weill Medical College of Cornell University. Dr. Jeanne Carter is head of the Female Sexual Medicine and Women’s Health Program at Memorial Sloan-Kettering. Dr. Maura Dickler is an associate attending physician on the Breast Cancer Medicine Service at Memorial Sloan-Kettering and associate professor of Medicine at Weill Medical College of Cornell University.

This article was originally published in Coping® with Cancer magazine, September/October 2011.

Study Shows Survival Benefit for Men with Intermediate-Grade Prostate Cancer

 

Short-term hormone therapy given in combination with radiation therapy to men with early-stage prostate cancer increased their chances of living longer compared to treatment with radiation therapy alone, according to a clinical trial supported by the National Cancer Institute. Benefits of the combined treatment were limited mainly to people with intermediate-risk disease and were not seen for men with low-risk prostate cancer, researchers say. The results appeared in the New England Journal of Medicine. The trial was conducted by the Radiation Therapy Oncology Group.

The study enrolled nearly 2,000 men with low- and intermediate-risk prostate cancer and followed their health status for more than nine years. Study participants were randomly assigned to treatment with radiation alone or radiation plus short-term androgen deprivation therapy using drugs that drastically lowered their natural production of testosterone, a hormone that feeds prostate cancer growth.

Researchers reported a statistically significant improvement in overall survival after 10 years on the trial for participants who received the short-term ADT and radiation.

Researchers reported a statistically significant improvement in overall survival after 10 years on the trial for participants who received the short-term ADT and radiation compared with those who received radiation therapy alone. Radiation therapy plus short-term ADT was also associated with fewer prostate cancer-related deaths compared to radiation therapy alone.

Among men with low-risk disease, short-term ADT produced little improvement in 10-year overall or disease-specific survival. It is possible that, for people with low-risk disease, longer follow-up is required to reveal a benefit. However, given that shortterm ADT has substantial quality of life consequences, including hot flashes and higher rates of erectile dysfunction, and the 10-year disease-specific mortality in the radiation-alone arm for men with low-risk disease was one percent, the researchers note that these findings do not support adding short-term ADT for low-risk prostate cancer. Newer high-dose radiation treatments may also lessen the need for use of ADT in low-risk men.

♦ ♦ ♦ ♦ ♦

This article was originally published in Coping® with Cancer magazine, September/October 2011.

Exercise for Breast Cancer Survivors

by Carole M. Schneider, PhD

Exercise is beneficial for breast cancer survivors. In fact, you should avoid inactivity, which can add to your fatigue and make you feel worse.

Exercise during and following your treatment will make you less fatigued, help you tolerate your treatment, help you maintain your strength for daily activities, improve your shoulder range of motion, reduce your anxiety, and improve your quality of life. You need to allow yourself some time for upper-body healing, but you should return to daily activities as soon as possible. Begin working the upper body with a trained physical therapist who can teach you basic range-of-motion and shouldermobility exercises. At the same time, since treatment affects your entire body, you should exercise the lower body during the healing process, either in a supervised environment or with a homebased walking program.

Building Your Own Exercise Program
Your exercise program should include variety and balance. You can achieve this by ensuring you focus on the main components of exercise: frequency, duration, intensity, and progression.

You should begin your program by exercising more than once per day (2 to 3 times) for short periods (5 to 10 minutes) followed by rest periods for a minimum of three days per week. Once you can tolerate short bouts, you may progress to longer, continuous periods (30 to 45 minutes) of exercise two to four times per week.

Weight training is especially beneficial for cancer survivors.

You should work out at a low intensity to start. There are many ways to determine how hard you should work out. The easiest way is to monitor your heart rate in beats per minute (bpm). Your heart rate intensity is determined using the following equation: 220 minus your age (which is your predicted maximum heart rate), multiplied by a percentage of how hard you want to work out.

For example, if you are 50 years old and you want to exercise at a low intensity (50% to 60% of your predicted maximum heart rate), the formula would look like this: 220 – 50 years = 170, multiplied by 50% (0.5) = 85 bpm; likewise, 60% = 102 bpm. Your goal is to exercise between 85 bpm and 102 bpm. You can monitor your heart rate using a heart rate monitor, or you can count your heartbeats for 15 seconds and multiply that number by 4 to get your bpm. When exercise at 50% to 60% (85 to 102 bpm) becomes too easy, increase your heart rate to a moderate intensity (65% to 75%; 111 to 128 bpm).

During treatment, you may feel better on some days and want to exercise at a moderate intensity, or you may feel poorly and want to exercise at a lower intensity. Following treatment, you can steadily increase either the duration (how long your workout lasts), the frequency (days per week), or the intensity (how hard you work out) of exercise, but progress slowly. The best rule is to increase duration and frequency before increasing intensity.

The exercises you do should depend on where you are in your recovery process. Walking is always the best activity to begin your program. Once you are out of treatment and you feel comfortable with walking, you may progress to jogging, cycling, or any activity that uses large muscle groups.

The Benefits of Weight Training
Weight training is especially beneficial for cancer survivors. Once your physician has cleared you, begin strengthening your upper and lower body. Begin slowly by using exercise bands two to three times a day for 10 minutes. Progress to using free weights for the upper body while still using the bands for the lower body. The idea is to progress slowly, especially with your upper body exercises.

Once you feel strong enough, you may begin to use stationary machines, heavier bands, or heavier free weights. Don’t forget your core. Try sit-ups or curls on an exercise ball to strengthen all of the muscles in the abdomen and back. Cancer survivors must also work on balance. You can use balance pads, foam rollers, balance discs, and balance beams. If you are experiencing lymphedema, you can still exercise (even weight training); however, you should wear a well-fitting compression garment during exercise.

Your goal for exercise should be to do a full-body workout (for example, walking, strength exercises, and balance) two to three days per week for 45 to 60 minutes per day. Take control of your life and make yourself feel better, stronger, and less anxious with exercise.

♦ ♦ ♦ ♦ ♦

Dr. Carole Schneider is the founder and director of the Rocky Mountain Cancer Rehabilitation Institute, which is located on the campus of the University of Northern Colorado in Greeley, CO. She is also a professor in Exercise Physiology at the university.

This article was originally published in Coping® with Cancer magazine, September/October 2011.

How Should I Care for Myself During Radiation Therapy?

 

Get plenty of rest.
Many people experience fatigue during radiation therapy, so it is important to make sure you are well rested. If possible, ask friends and family to help out during treatment by running errands and preparing meals. This will help you get the rest you need to focus on fighting your cancer. If you need more help, ask your social worker or nurse to give you information on a local cancer support group or other resources. Volunteers may be able to help.

Even though it is important to recognize when you might need some rest, there is good evidence to suggest that some physical activity during treatment can help decrease fatigue. For example, many people feel a daily walk helps decrease some of their treatment-related fatigue. Ask your radiation oncologist what the best form of daily exercise might be for you.

With certain types of radiation, you may need to change your diet to minimize side effects.

Follow doctor’s orders.
In many cases, your doctor will ask you to call if you develop a fever of 101 degrees or higher. Be sure to read your doctor’s instructions as far as caring for yourself during treatment.

Eat a balanced, nutritious diet.
A nutritionist, nurse, or doctor may work with you to make sure you are eating the right foods to get the vitamins and minerals you need. With certain types of radiation, you may need to change your diet to minimize side effects. You should not attempt to lose weight during radiation therapy since you need more calories due to your cancer and treatment.

Treat the skin that is exposed to radiation with extra care.
The skin in the area receiving treatment may become red and sensitive, similar to getting a sunburn. Your radiation oncology nurse will review specific instructions for caring for your skin with you. Some guidelines include:

• Clean the skin daily with warm water and a mild soap recommended by your nurse.
• Avoid using any lotions, perfumes, deodorants, or powders in the treatment area unless approved by your doctor or nurse. Try not to use products containing alcohol or perfumes.
• Avoid putting anything hot or cold on the treated skin. This includes heating pads and ice packs.
• Stay out of the sun. If you must be outdoors, wear a hat or clothing to protect your skin. After treatment, use sunscreen with an SPF of at least 15.

Seek out support.
There are many emotional demands on you during your cancer diagnosis and treatment. It is common to feel anxious, depressed, afraid, or hopeless. It may help to talk about your feelings. To find a support group in your area, ask your radiation oncology nurse. There are many support groups that meet in person, over the phone, or online. Some support organizations can even help you manage financial issues, such as insurance or co-pays.

♦ ♦ ♦ ♦ ♦

Reprinted by the permission of ASTRO, the American Society for Radiation Oncology, from rtanswers.org.

This article was originally published in Coping® with Cancer magazine, September/October 2011.

International Brain Tumour Awareness Week is October 30 - November 5, 2011

Walk Around the World for Brain Tumours January 1 - November 5, 2011

 

The International Brain Tumour Alliance (IBTA) seeks to be an alliance of the support, advocacy and information groups for brain tumour patients and caregivers in different countries and also includes researchers, scientists, clinicians and allied health professionals who work in the area of brain tumours.The fifth annual International Brain Tumour Awareness Week will take place from October 30 - November 5, 2011.

"Fund-raising and awareness-raising walks have been part of cancer advocacy and a number of brain tumour related walks in various cities and towns are already well established. In 2007, realising that it was 40,000 kilometers (24,856 miles) to circle the globe at least once at the equator, the IBTA invited brain tumour groups and activists to 'donate' the combined mileage of their walkers who had participated in locally sponsored walks to the IBTA to see if we could symbolically circle the world not once, but several times. The knowledge that people are part of a worldwide effort adds an extra dimension to their walk," says Denis Strangman, IBTA chair.

"IBTA invites brain tumour groups and activists to 'donate' the combined mileage of their walkers to the IBTA to see if we could symbolically circle the world."

The 2007 Walk was a great success and a total distance of 114,167 kilometers (70,942 miles), two and a half times around the world, was achieved by 22,600 walkers in 83 walks in 18 countries. The Walk Around the World for Brain Tumours has continued annually since 2007. The 2011 the World Walk will be the fifth. Walks can be done anytime between January 1 and November 5, 2011.

"People have over ten months to submit their walking mileage for inclusion in the total. Some groups hold their walk druing the Awareness Week, but other groups hold seminars and meetings during this seven day period to contribute towards the general awareness-raising of brain tumours," says Kathy Oliver, IBTA Co-director.

For more information on the International Brain Tumour Alliance and the World Walk, visit www.theibta.org.

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National Shine A Light on Lung Cancer Vigil on November 1, 2011

Largest coordinated awareness event for lung cancer to take place across the United States and in Australia and Afghanistan

 

The Lung Cancer Alliance (LCA) announced the 3rd annual National Shine a Light on Lung Cancer Vigil with at least 50 vigils taking place nationwide on November 1, 2011. The vigil is likely the largest coordinated awareness event for lung cancer with volunteers from across the country rallying together to bring attention, honor loved ones and provide hope, compassion, and support for the millions touched by this disease every year.

"We are so grateful to our volunteers across the country and now, the world, who host vigils during the month of November." said Laurie Fenton-Ambrose, LCA President & CEO. "Together, we will ignite a national dialogue and bring lung cancer out of the shadows, while our organization provides the one-on-one support, information and action that will save lives today."

The National Shine a Light on Lung Cancer Vigil started with a handful of individuals in California and Boston. Under the vision and leadership of Diane Legg, a lung cancer survivor and founder of LCA’s New England Chapter, along with another dedicated advocate David Watson, the Boston vigil quickly became the cornerstone of a national program that this year has gone global.

"Together, we will ignite a national dialogue and bring lung cancer out of the shadows, while our organization provides the one-on-one support, information and action that will save lives today."

"When we first started this effort in 2006, there was very little for those affected by lung cancer," said Legg. "I wanted to come up with a way to offer all of the people touched by lung cancer a simple and effective way of honoring loved ones and getting involved in the lung cancer movement. Together, with volunteers and their loved ones from across the country and now the globe, we have done just that – and we will continue way past our 100 vigil goal!"

There are currently 50 vigils taking place in 23 states, as well as at a military installation in Kabul, Afghanistan. This year, LCA also partnered with the Australian Lung Foundation to bring Shine a Light Vigils to Australia.

 "The Australian Lung Foundation is proud to be the first advocacy organization, outside of the U.S., to partner with Lung Cancer Alliance and bring their Shine a Light on Lung Cancer Vigil down under," Lung Foundation Chief Executive Officer, William Darbishire said.

LCA is halfway to meeting this year’s 100 vigil goal representing every state and Washington, DC. There is still time to join the vigil movement and LCA will provide all the tools to host and promote a vigil in your community, including a website, media advisory, glow sticks, awareness bracelets and educational materials for those living with or at risk for the disease.

Whether a vigil has 5 or 500 people in attendance makes no difference. Helping one person better manage a diagnosis or educating an at-risk individual about their early detection options means we are provide life-saving change today.

"This is my second year hosting a vigil here in Lompoc, CA," said Mary Anne Rios, lung cancer survivor. "Putting the vigil together each year and watching so many people in my community come together for lung cancer is so rewarding and inspiring. We are truly helping and making a difference for this disease."

If you want to join Diane, Mary Ann and others by hosting a vigil or attending one in your area, go to www.shinealightonlungcancer.org for more information. Attend a Vigil. Host a Vigil. Join the Movement!

LCA is sponsored by OSI Pharmaceuticals and Pfizer.

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2011 National Breast Cancer Awareness Month

A Statement from Secretary Sebelius, Department of Health & Human Services

 

For more than 25 years, National Breast Cancer Awareness Month has been a time to reaffirm our commitment to fighting breast cancer and to remind ourselves of the importance of prevention and early detection. Breast cancer remains one of the most frequently diagnosed cancers among American women and despite remarkable advances in treatment and prevention, it remains the second leading cause of cancer death. This year alone, it is estimated that more than 230,000 U.S. women will be diagnosed with breast cancer and nearly 40,000 will die of the disease.

Regular mammography screening can help lower breast cancer mortality by finding breast cancer early, when the chance of successful treatment is best. If 90 percent of women 40 and older received breast cancer screening, 3,700 lives would be saved each year. Costs, even moderate co-pays, deter many patients from receiving these important screenings. Under the Affordable Care Act, women’s preventive health care – such as mammograms and screenings for cervical cancer – is covered with no co-pays or other out-of-pocket costs.

We have done away with lifetime limits, offering women the peace of mind that their health insurance will be available when women need it most.

In addition to regular mammography screening, there are steps that women can take that may help reduce their risk of developing breast cancer. Women should talk with their doctor about their personal risk for breast cancer, when to start having mammograms, and how often to have them. Women should also try to maintain a healthy weight, exercise regularly, and reduce their intake of alcohol. If a woman is found to be at increased risk of breast cancer because of her medical history or a known high-risk gene mutation, she should talk with her doctor to decide what her best options are to reduce breast cancer risk might be. With the release of new Women’s Preventive Services Guidelines, a well-woman visit is available to women to have an opportunity to discuss her health care needs with her medical provider—at no additional cost to her.

The Affordable Care Act is also helping women who are going or have gone through costly breast cancer treatment. Beginning in 2014, it will be illegal for insurance companies to discriminate against anyone with a pre-existing condition. In the past, insurance companies could deny coverage to women due to pre-existing conditions such as breast cancer, and if coverage was attained, insurance companies set lifetime and annual limits on what the companies would spend for benefits. We have done away with lifetime limits, offering women the peace of mind that their health insurance will be available when women need it most. We are also phasing out the use of annual dollar limits over the next three years until 2014 when the Affordable Care Act bans them for most plans.

These changes are making real differences in the lives of American women and families. Prevention, coupled with continued research, will help save more lives and improve the quality of life for all of us touched by breast cancer.

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Source: Department of Health & Human Services, www.hhs.gov

It’s Your Kids’ World. You’re Just Barfing In It.

by Shelley Lewis

Although our trip had been planned long before I found out I had breast cancer, I couldn’t have chosen a better place to go on vacation before chemotherapy. The Italians really know how to enjoy life. There’s natural beauty, art, great food and wine, and a pace that forces you to slow down and enjoy it. It was perfect.

Sort of. The truth is that while we had a wonderful trip, there was a lot of pressure on everybody to have One Last Good Time for a while. At first that sentiment was unspoken, then it was quietly articulated, and finally, it was snarled, all by me, all at our teenaged daughter, Julia, who just didn’t want to deal with my expectations. Looking back on it, she thinks I was a little too convincing when I told her not to worry and insisted that she not treat me differently. She definitely didn’t ease up on the parent-teenager drama. (Usually, when we traveled with Julia she brought a friend, but this time it was just the three of us. Silly me, I thought it would be good to have some intimate family time.)

Talking to your kids about cancer is a lot like talking to them for the first time about sex.

Instead, there was sulking at the Borghese Gardens in Rome, a meltdown in Perugia, a snarkfest in Todi. I will admit to being surprised by my daughter in Italy; she is normally a considerate and empathetic kid. She was with us at the hospital the day I had surgery and was helpful in the days afterward. But the pressure to Have a Meaningful Experience in Italy may have been too much. It all came to a head one day in the lovely town of Assisi, home of St. Francis. I had been lingering over silk headbands at some little shop, and when she asked me why, I told her I was thinking of getting a few for when my hair was thin from chemo.

“Stop talking about cancer,” she barked loudly at me. “I don’t want to hear about it anymore.” (Was I talking about it a lot? I thought I barely mentioned it; she says I mentioned it constantly. In any case, it was clearly too much for her.)

I have since learned that kids have their own way of dealing with the fear that comes with your diagnosis. Sometimes they’re unbelievably sweet and thoughtful, and sometimes they seem unfathomably selfish. Julia was mostly sweet and thoughtful, but she had her fearful moments. Teenagers in particular are tough; their emotions are so raw under the best of circumstances. Having a mother with breast cancer upsets their fragile equilibrium and forces them to confront one more thing to worry about, one more situation that sets them apart from their friends, one more problem that’s out of their control.

Still, I believe kids want to make some kind of contribution. I would suggest you ask your kids how they want to pitch in. Little ones may be more than eager to help you. Teenagers, while guarding their routines as much as possible, probably will also want to feel the sense of empowerment that is a by-product of responsibilities. Julia was a sympathetic and helpful daughter once I began the chemo and had days of feeling kind of lousy.

What looks like indifference may well be fear. I’ve come to think that talking to your kids about breast cancer is a lot like talking to them for the first time about sex. There’s a limit to how much information they can handle at one time. If you pay attention, you’ll know when they’ve taken in as much as they can in one sitting.

The very wise Ann Pleshette Murphy, who is Good Morning America’s parenting expert, suggests that you be as honest with your kids as possible. She also has a great technique for finding out how much they can handle: “When they ask you a tough question, about cancer or anything else, sometimes it’s best to ask them back, ‘What do you think is the answer?’ That way you find out what they’re thinking and you can respond without overwhelming them.”

And remember that when it comes to kids, it’s their world, and we’re just barfing in it.

♦ ♦ ♦ ♦ ♦

Shelley Lewis is executive producer of the weekly PBS news magazine program Need to Know. She lives in New York with her husband.

Excerpted with permission from Five Lessons I Didn’t Learn from Breast Cancer (and One Big One I Did), by Shelley Lewis, copyright © 2008 by Shelley Lewis, published by New American Library, a division of Penguin Group.

This article was originally published in Coping® with Cancer magazine, September/October 2011.

How to Read Your Pathology Report

 

Surgical pathology reports vary somewhat regarding the information that they contain; however, each report will document the significant details that affect the management of your diagnosis. Typically, a surgical pathology report is divided into a minimum of four to five sections:

♦ Patient Identifiers and Clinical Information
♦ Specimen Section
♦ Gross Description
♦ Microscopic Description
♦ Diagnosis

Sometimes the report includes a comment section, which may note a specific scientific reference or journal article.

Patient Identifiers and Clinical Information
Each pathology report includes patient identifiers to ensure that the report is about you and your diagnosis. Your name, your birth date, and your hospital or medical record number, along with your pathologist’s signature and the name and address of the laboratory, will appear on your pathology report.

When your specimen is sent to the pathology laboratory, the container with your specimen also is labeled with your patient identifiers and matched to your medical record to ensure that the specimen is from you. After the lab processes your specimen and prepares the final pathology report, pathologists and other medical laboratory professionals check these identifiers repeatedly to ensure the report relates the correct information to your doctor for your care.

Each pathology department uses a numbering system to specifically label each person’s specimen. These numbers are called accession or surgical numbers and are used to help identify your specimen as it is processed by the pathology laboratory. All the microscope slides made from your specimen also will include your accession or surgical number and will correlate with your patient identifiers.

The diagnosis section represents the final medical diagnosis that is established after thorough examination of your specimen.

Sometimes your doctor may supply additional clinical information about you to help your pathologist when they examine your specimen. This may include your symptoms, medical conditions, or possible disorders your doctor would like your pathologist to look for or special studies your doctor would like performed on your specimen.

Specimen Section
The specimen section refers to the anatomic location (place on the body) of the tissue or name of the organ. This section is important as an incorrect description or designation (such as to the right or left) can be detrimental with grave consequences. Pathologists and other medical laboratory professionals record this information carefully to ensure that the pathology report documents the appropriate designation.

Gross Description
The gross description section details what tissue the pathologist will examine under the microscope and describes how your specimen looks to the “naked eye.” It includes the size, color, number of tissue samples, and when appropriate, the weight of your specimen. Gross descriptions of a small biopsy specimen are typically short. However, a more complex specimen may require a more detailed description.

Usually, if there are multiple tissues or organs in your specimen, the pathologist will describe each and will take samples to examine under the microscope. Pathologists may sample different portions of even a single organ and include any area that looks abnormal or different from what is usually seen in a healthy organ. The pathologist will create a slide for each of these samples to be viewed under the microscope and will list each in your pathology report.

For each cancer, there are standardized criteria that vary depending on the location of the cancer and the type of cancer. The details are documented to stage the cancer, which directly affects your prognosis and subsequent treatment.

Microscopic Description
The microscopic description details how your specimen looks under the microscope and how it compares with normal cells. The section describes if the cancer has invaded nearby tissues. This microscopic description is then used, along with the gross description and your clinical history, to make the pathologic diagnosis.

The laboratory always performs a microscopic examination of a specimen. However, it does not always include a microscopic description on the pathology report. Pathologists who do not describe the microscopic features in the report may include findings that are outside of the norm or that would directly affect your care within the diagnosis section or as a comment.

The pathologist also uses the microscopic description to note small incidental findings that may not be important to your care but may interest other pathologists who may see the case. These findings could include the results of special studies or microscopic stains that the lab performed to help confirm the diagnosis or rule out a different diagnosis.

Diagnosis Section
The diagnosis section represents the final medical diagnosis that is established after thorough examination of your specimen. Some diagnoses are very short, such as acute appendicitis. Other diagnoses can be quite lengthy, as they need to describe many aspects of the cancer that could affect your treatment and outcome.

In these cancer cases, there often will be additional information called cancer staging that is included in the diagnosis. This information describes what type of cancer is present, how the cancer looks (cancer grade), how far in the specimen the cancer has spread (cancer stage), and other aspects of the cancer, such as if the cancer is present in blood vessels. The diagnosis also will include whether the surgical margins (the edges or borders of a tumor) contain cancer. All this information helps determine if you will need additional treatments and helps predict your health over time.

Comment Section
Sometimes there are diseases that are subtle or difficult to diagnose or in which the disease process is considered controversial or unclear. Many pathologists tend to utilize the comment section to explain the intricacies when this type of issue arises. In addition, if the diagnosis is not clear, rare, or associated with new information or technology, the pathologist uses the comment section to list the possible diagnoses, recommendations for additional testing, or studies that may be helpful in finding the correct diagnosis.

In summary, the surgical pathology report represents a description, which includes the location of the specimen and what your specimen looks like both with the naked eye and under microscope examination. Your pathologist will integrate all the clinical information about you into the pathology report to make a pathologic diagnosis and will consult with your other doctors regarding your treatment and care.

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Reprinted by the permission of The College of American Pathologists, from MyBiopsy.org.

This article was originally published in Coping® with Cancer magazine, September/October 2011.

Knitting in the Chemo Room

by Felicia Mitchell

On my lap, purple yarn and plastic tubes:
a tangled web of medicine,
the cord for my headphones,
knitting as necessary as Herceptin,
Taxotere, carboplatin, sodium chloride.

Inside my head, antique music boxes play,
their melodies innocent of the detritus of cancer.
I listen to every note, each time I sit,
imagine myself inside a box, this music box,
wheels turning steel into brainwaves
I call infusion too.

My hands are sometimes still,
my feet on the recliner moving with a beat.

Most times, I hold onto knitting needles
that are nothing like the small needles that stick me,
their filament growing in my hands
instead of in a network of veins.
Chemotherapy pushes in, wool pulls out,
and the dancing girl inside my head
keeps spinning to music composed by people
who died before I was born.

♦ ♦ ♦ ♦ ♦

Felicia Mitchell is a poet and breast cancer survivor who teaches at Emory & Henry College in Emory, VA.

This article was originally published in Coping® with Cancer magazine, September/October 2011.

New Research Presented at the 5th Annual Breast Cancer Symposium

 

Co-sponsored by the American Society of Breast Disease, the American Society of Breast Surgeons, the American Society of Clinical Oncology, the American Society for Radiation Oncology, the National Consortium of Breast Centers, and the Society of Surgical Oncology

New studies on breast cancer screening, treatment, and survival were presented at the 2011 Breast Cancer Symposium held September 8-10, 2011, in San Francisco, California.

Two Studies Report Similar Recurrence, Survival Rates for Breast Conservation and Mastectomy Among Younger Women with Breast Cancer
A pair of studies indicates comparable outcomes – in local recurrence and survival rates – for lumpectomy or mastectomy among women with breast cancer age 40 and younger. Young age at diagnosis is considered a risk factor for breast cancer recurrence, and there has been a trend in recent years among young women to increasingly choose mastectomy rather than lumpectomy – despite a lack of definitive evidence showing improved survival. As a result, these findings may have important implications in treatment decisions.

Study Finds Recurrence Rates Are Similar in Younger Women Who Have Either Breast Conservation Surgery or Mastectomy
In this retrospective study, Julliette Buckley, MD, a fellow in breast surgery at Massachusetts General Hospital, and colleagues reviewed medical records of 628 women age 40 and younger who were diagnosed with up to stage III breast cancer. They examined various patient demographic data and determined rates of local recurrence, distant recurrence, and overall survival. When they analyzed the data according to the type of surgery the women had, they found no statistically significant difference in local cancer recurrence risk.

“Although the majority of women in our study underwent breast-conserving therapy, previous research has suggested that this procedure leaves women at greater risk for local recurrence. However, we found no significant difference in the rates of local recurrence between women treated with breast-conserving surgery or mastectomy. These results suggest that advances in chemotherapy, imaging, and radiation have reduced local and distant recurrence risks and have made breast-conserving therapy a safe option for many young women,” said Dr. Buckley.

Analysis Shows Breast Conservation and Mastectomy Result in Similar Survival Among Younger Women with Early-Stage Breast Cancer
Investigators led by Usama Mahmood, MD, a fellow in radiation oncology at The University of Texas MD Anderson Cancer Center, compared overall survival and breast cancer-specific survival among women ages 20 to 39 who were diagnosed with early-stage breast cancer. Of these women, 45 percent received breast conservation therapy and 55 percent underwent mastectomy. After accounting for a number of variables, they found no difference in overall and cancer-specific survival between the two groups.

“Our findings provide reassurance that breast conservation therapy leads to similar survival outcomes as mastectomy even in younger women with early-stage breast cancer,” said Dr. Mahmood. “These findings can provide reassurance to younger women with early-stage breast cancer who are considering less aggressive surgery.”

New Statistical Tool May Predict Risk of Lymphedema Associated with Breast Cancer Surgery
Researchers have created a set of statistical models that are more than 70 percent accurate for predicting the fiveyear risk of developing lymphedema after lymph node removal during breast cancer surgery. While the models continue to be refined, they could eventually become a useful decision-making tool for physicians. These findings have important implications because it is currently very difficult to predict which women will develop this surgical side effect.

In women with breast cancer, lymphedema is a swelling under the arm characterized by localized fluid retention and tissue swelling that can occur following axillary lymph node surgery, which is often necessary if the cancer has spread to the lymph nodes. It can be a chronic, disabling condition, and it affects about one-third of those who have axillary lymph node surgery.

Investigators led by Jose Bevilacqua, MD, phd, a surgical oncologist at Hospital Sirio Libanes in Sao Paulo, Brazil, prospectively studied about 1,000 women with breast cancer undergoing axillary dissection. The overall five-year incidence of lymphedema in the group was 30.3 percent.

Using a variety of clinical factors, the researchers developed three models to predict the risk of developing lymphedema at different points in time following surgery. The researchers compared the models’ predictions to the actual occurrence of lymphedema in this group of women and found that the models correctly predicted a person would develop lymphedema more than 7 out of 10 times.

“These models performed well,” Dr. Bevilacqua said. “The statistical models […] use readily available clinical factors and allow for quick and easy estimation of individual risks of developing lymphedema after axillary lymph node surgery in women with breast cancer. For the sake of comparison, these modeling tools are as accurate for predicting a woman’s risk of developing lymphedema as mammography is for the detection of breast cancer.” Dr. Bevilacqua suggested that the models may become useful tools to help physicians choose whether to recommend axillary dissection.

Additional Studies of Note

Impact of Chemotherapy Timing on Local-Regional Failures in Women Undergoing Breast-Conserving Therapy
“Traditionally, surgery has been performed prior to chemotherapy in women with large breast cancers. This study demonstrated that in women undergoing chemotherapy first, the risk of local recurrence was the same as in women undergoing surgery first. Administering chemotherapy first may allow for ‘downstaging’ or a significant decrease in the size of the cancer prior to surgery. There is no adverse effect on recurrence rates. While this study did not address cosmesis, decreasing the size of the tumor prior to surgery may allow for a more cosmetically acceptable lumpectomy to be performed.” – Deanna Attai, MD, Center for Breast Care, Inc.

Relationship Between Taxane-Induced Neuropathy and Clinical Outcomes after Adjuvant Chemotherapy
“As components of adjuvant chemotherapy, taxanes improve relapse-free and overall survival. Their use can be limited by peripheral neuropathy. Prior work has demonstrated the potential for single nucleotide polymorphisms (SNPs) to predict for taxane neurotoxicity. The current analysis […] provides reassurance that taxane neuropathy is not linked to taxane benefit.” – Andrew D. Seidman, MD, attending physician for the Breast Cancer Medicine Service at Memorial Sloan-Kettering Cancer Center

Male Breast Cancer: Survival Rate and Determinants of Prognosis
“While the study itself has some limitations, the authors confirm what has been shown historically. Breast cancer in men occurs later in life, is frequently associated with a delay in diagnosis, and is commonly associated with lymph node involvement. Although breast cancer is rare in men, these findings demonstrate that it is critically important to continue to raise awareness about the occurrence of breast cancer in men.” – Gail S. Lebovic, MA, MD, FACS, past president of the American Society of Breast Disease

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This article was originally published in Coping® with Cancer magazine, September/October 2011.

October 13 is National Metastatic Breast Cancer Awareness Day

13 Facts Everyone Should Know about Metastatic Breast Cancer

 

1. No one dies from breast cancer that remains in the breast. The lump itself is not what kills. The metastasis of cancerous cells to a vital organ is what kills.

2. Metastasis refers to the spread of cancer to different parts of the body, typically the bones, liver, lungs and brain.

3. An estimated 155,000 Americans are currently living with metastatic breast cancer. Metastatic breast cancer accounts for approximately 40,000 deaths annually in the U.S.

4. Treatment for metastatic breast cancer is lifelong and focuses on control and quality of life vs. curative intent. (“Treatable but unbeatable.”)

5. About 6% to 10% of people are Stage IV from their initial diagnosis.

6. Early detection is not a cure. Metastatic breast cancer can occur ANY time after a person’s original diagnosis, EVEN if the patient was initially Stage 0, I, II or III and DESPITE getting annual checkups and annual mammograms.

7. Between 20% to 30% of people initially diagnosed with regional stage disease WILL develop metastatic breast cancer.

8. Young people DO get metastatic breast cancer.

9. There are many different kinds of metastatic breast cancer.

10. Treatment choices for MBC are guided by hormone (ER/PR) and HER2 receptor status, location and extent of metastasis (visceral vs. nonvisceral), previous treatment and other factors.

11. Metastatic breast cancer isn’t an automatic death sentence. Although most people will ultimately die of their disease, some can live long and productive lives.

12. There are no hard and fast prognostic statistics for metastatic breast cancer. Everyone’s situation is unique, but according to the American Cancer Society, the 5 year survival rate for stage IV is around 20%.

13. October 13 is National Metastatic Breast Cancer Awareness Day. We appreciate your support on October 13 and throughout the year.

Click here to download a flyer you can print and distribute.

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The MBCN 2011 Annual Conference will be held Saturday, October 29, 2011, at Johns Hopkins University Medical Center. Updates on metastatic breast cancer treatments, research and coping strategies will be presented. Visit www.mbcn.org to register for the free conference.

To learn more about National Metastatic Breast Cancer Awareness Day as well as resources specifically for people with metastatic breast cancer see www.mbcn.org.

Anger

A Natural Emotion That Often Accompanies a Diagnosis of Advanced Breast Cancer

 

When life does not go according to our desires and expectations, we frequently react with anger. The anger that stems from coping with a deadly disease can be more intense than what people experience in more ordinary circumstances and can surface in unexpected ways at surprising times. A terminal disease naturally spawns a host of disappointments. You may feel singled out from others who have been cured of cancer or who are in remission. You may be upset that so many others appear to be in good health and look to be long-lived. The hand you have been dealt could seem unfair, and you may ask, “Why me?”

You may be mad, too, about the troublesome and limiting side effects caused by treatment and the cancer’s progression. You may be irritated by the time, trouble, and expense required to take care of yourself and may become exasperated in having to take many medications and having to tolerate frequent blood draws, scans, and appointments. You may feel short-tempered around others who do not understand, or seem not to care about, what you are experiencing, including loved ones and healthcare providers. Perhaps, too, you resent media reports proclaiming that breast cancer is highly curable.

All this anger is human, reasonable, and should not be denied.

Your anger may also be directed unfairly at yourself. You may be infuriated and remorseful believing that you caused your own cancer. If you experience such thoughts, keep in mind that others engaged in, or did not engage in, the same activities that you did, and they did not all get cancer. Outside of rare instances when people inherit a breast cancer gene that carries a high probability of malfunctioning and causing cancer early in life, your cancer is the result of multiple factors, including the natural aging process. Furthermore, the body of scientific studies has not conclusively shown that breast cancer is linked to any particular personality type, painful life event, or emotional state. The worry that you brought about your own demise is likely ill founded, as is the notion that you could cure your illness if you “straightened out your act” or were not depressed. Even if you did do something that contributed to your plight, remember that you were doing the best you could at that time and would likely do things differently if you could have seen into the future.

All this anger is human, reasonable, and should not be denied; rather it would be helpful for it to be expressed when possible in a manner that is not harmful to you or others. Sometimes anger is the result of not being proactive and needing to assert oneself. If this is the case, it may subside when you take more control of decisions in your life, even in small ways, like choosing when you want to do something, or in big ways, such as in deciding what you think is best for your treatment rather than deferring to others. You may understand and better control outbursts if you write about your anger in a journal. You can possibly transform your fury through creative endeavors such as drawing or molding in clay a likeness of your anger or in expressing it through dance or movement. Depending on the situation, you could discharge your anger in a number of ways, from squeezing a ball in your hand, to screaming or yelling, to physically exerting yourself, such as in ripping magazines or throwing pillows around. The act of expressing your feelings safely is what is most important.

Anger can creep up or break loose out of the blue. You may find yourself furious over a trivial matter, or you might burst out crying unexpectedly. Be wary of displacing your anger onto someone who is not to blame. People experiencing great loss can find themselves in the position of needing to apologize for treating others unfairly. Forgive yourself if this occurs since this is not unusual and you are in unusual circumstances. Anger can be like a storm that passes and clears the air, but if you find that yours is habitual and harmful, try some of the activities above or talk with a counselor.

♦ ♦ ♦ ♦ ♦

Excerpted with permission from Breast Cancer Recurrence & Advanced Disease, by Barbara L. Gordon, PhD, Heather S. Shaw, MD, David J. Kroll, PhD, and Brooke R. Daniel, MD, copyright © 2010 by Duke University Press. For more information, visit barbaralgordon.net.

This article was originally published in Coping® with Cancer magazine, September/October 2011.

National Breast Cancer Awareness Month, October 2011

A Proclamation by the President of the United States of America

 

This month, pink ribbons will be displayed around our country, adorning jackets and public spaces alike. A sign of solidarity, these ribbons remind us of our commitment to preventing and treating breast cancer, and to supporting those courageously battling this disease. Countless Americans will participate in events to raise awareness alongside survivors and their families, working together to support research that will save lives.

We have come far in recent decades in the prevention, early detection, and treatment of breast cancer. Still, this year, hundreds of thousands of women will be diagnosed with breast cancer, and too many will be lost. African-American women bear a particularly large burden, experiencing higher death rates from breast cancer than other racial or ethnic groups in the United States. Too many men also develop and fall victim to this cancer.

It is important to understand the risks and precautions associated with breast cancer. Some risk factors, like obesity, are avoidable. Other factors, like family history, are not avoidable, but knowledge of them can help inform medical decisions. Taking protective steps like getting regular check-ups, maintaining a healthy body weight and balanced diet, and exercising may help lower the chances of developing breast cancer. I encourage all Americans to talk to their doctors about breast cancer, and to visit www.Cancer.gov to learn more about symptoms, diagnosis, and treatment.

Screening and early detection are essential to fighting this disease, yet only about two-thirds of American women over 40 have had a mammogram in the last 2 years. But now, thanks to the Affordable Care Act, all Americans joining new health-care plans can receive recommended preventive services, including annual mammograms for women over 40, with no out-of-pocket costs. This new benefit would also ensure that women in new insurance plans who are at high risk for breast cancer are covered when they speak with their clinicians about ways to prevent or delay the development of cancer. The Affordable Care Act also established a committee tasked with advancing awareness and prevention of breast cancer among young women.

This month, we join together in honoring the women and men lost to breast cancer. In their memory, we recommit to supporting the hard-working researchers, health-care providers, advocates, and organizations dedicated to treating and curing this devastating disease. We embrace our mothers, daughters, sisters, and loved ones currently battling breast cancer, along with their friends and families, and we resolve to one day defeat it.

NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim October 2011 as National Breast Cancer Awareness Month. I encourage citizens, government agencies, private businesses, nonprofit organizations, and all other interested groups to join in activities that will increase awareness of what Americans can do to prevent and control breast cancer.

IN WITNESS WHEREOF, I have hereunto set my hand this third day of October, in the year of our Lord two thousand eleven, and of the Independence of the United States of America the two hundred and thirty-sixth.

BARACK OBAMA

♦ ♦ ♦ ♦ ♦

Source: The White House, Office of the Press Secretary, www.whitehouse.gov

Cancer and Your Mouth

Managing Oral Mucositis

by Debra Harris, RN, MSN, OCN, and Malinda Burt, RN, BSN, OCN

Mucositis is a general term that describes inflammation of mucosal cells that line the gastrointestinal tract from the mouth to the rectum. This inflammation most commonly affects the mouth and esophagus (throat), but may be present throughout the gastrointestinal tract.

Mucositis may begin with painless redness and swelling, but it frequently progresses to more painful ulcers or lesions that are often described as burning or aching. These lesions commonly occur on the tongue, lips, and inside of cheeks. Pain is frequently worse with swallowing. Sensitivity to certain foods, especially spicy ones, may be increased. Other taste changes may also occur. In more severe cases, eating, drinking, and talking become difficult.

What causes mucositis?
Chemotherapy and radiation work by directly damaging and destroying cancer cells in the body. These treatments target abnormal cancer cells by their rapid growth. Unfortunately, we also have many normal rapidly growing cells in the body that can be affected by chemotherapy. The cells that line the surface of the gastrointestinal tract are this type of cell. When chemotherapy damages these cells, inflammation, irritation, and severe swelling can occur. This can lead to eventual tissue breakdown and ulceration of the mouth and throat.

When chemotherapy damages these cells, inflammation, irritation, and severe swelling can occur.

How do people cope with mucositis?
The timeline for developing mucositis varies depending on the type of treatment received. There are many steps you can take prior to and during treatment to minimize the severity of mucositis. Unfortunately, however, symptoms are often not preventable. Here are some tips to help you cope with oral mucositis:

• Have a dental evaluation prior to treatment.
• Maintain good oral care prior to and throughout treatment.
• Receive and follow instructions related to brushing, flossing, and mouth rinsing.
• Lubricate lips with lip balm or ointment.
• Keep your mouth moist with frequent rinses.
• Stay hydrated, drinking at least two liters of fluid a day if tolerated.
• Take pain medicine as ordered.
• Eat mild, easy-to-swallow foods.
• Use nutritional supplements if necessary.
• Chew non-irritating sugar-free gum or hard candy to stimulate saliva.
• Avoid alcohol and mouthwashes that contain alcohol.
• Avoid acid-containing fruits and juices (orange, grapefruit, lemon, tomato).
• Avoid tobacco.

 



Malinda Burt

What can family members and friends do to help me with mucositis?
Ask family members and friends to encourage you to continue oral care, to prepare foods that are mild and easy to swallow, and to help you stay hydrated. When talking to family and friends about oral mucositis, tell them about how the mucositis is affecting how you feel about treatment, as well as how it is affecting your ability to eat, drink, swallow, and talk. Write notes if necessary. Let them know what is working and encourage their participation at the level that makes you comfortable.

What should I report to my healthcare provider?
You should report the following symptoms to your healthcare provider:

• large amounts of bleeding or bleeding that does not stop;
• a temperature above 100.4 degrees;
• discomfort, pain, or irritation;
• new sores, ulcers, or lesions in your mouth;
• extremely dry mouth;
• difficulty eating, chewing, or swallowing; and
• difficulty breathing.

Researchers and scientists are working hard to develop new ways to prevent mucositis. It’s important to work with your healthcare team and your dentist to make sure your mouth is in good shape as you prepare for and complete treatment. Know that although mucositis can be distressing, it is temporary and the pain can be minimized.

♦ ♦ ♦ ♦ ♦

Debra Harris is the nurse manager for the Bone Marrow Transplant and Hematological Malignancies Unit at Oregon Health & Science University in Portland, OR. She has served as the Advanced Practice Lead for the creation of evidenced-based practice tools related to oral mucositis for nurses since 2006. Malinda Burt is the staff educator for the Bone Marrow Transplant and Hematological Malignancies Unit at OHSU.

This article was originally published in Coping® with Cancer magazine, September/October 2011.

Ready for Retirement?

For cancer survivors, a retirement plan can ensure that you are financially and emotionally prepared.

by Carolyn Messner, DSW, MSW, ACSW, BCD,LCSW-R
and Enrique Silva, BS, M.Arch NCIDQ, LEED AP

For cancer survivors, the transition from working to retirement is full of challenges and opportunities. The average American retiring at age 65 can expect to spend 18 years in retirement. When planning for retirement, there are two important areas to consider: managing your finances and managing your time.

Managing Your Finances
Estimating income and resources is essential in retirement. Today’s pre-retirees say they will need to postpone their retirement 4.2 years on average. The uninsured costs of healthcare are the biggest financial unknown in retirement. Medicare provides partial health insurance coverage to people who are 65 and over or who meet other special criteria. Many retirees purchase supplemental insurance from a private company or apply for federal, state, or local entitlement programs to pay for costs not covered by Medicare.

During retirement, there are certain expenses that may decrease. These include work-related costs, such as commuting, parking, lunches, business clothing, and dry cleaning; income taxes; and home maintenance costs for tasks you will now do yourself instead of hiring someone. There are also certain expenses that may increase, including recreational and social activities, travel, health insurance, healthcare, and prescriptions.

Managing Your Time
Many people give little thought to how they will spend their time in retirement. While some retirees report a honeymoon-like period for the first six to nine months of retirement, many experience an eventual urge to become more productive in retirement than they had anticipated.

It’s important to determine what you want out of retirement. Think about your personality. If you’re the type of person who loves alone time, then books, newspapers, and TV may bring you contentment. However, extroverts are more likely to enjoy and need activities involving others.

Part-Time Work
Some retirees may have achieved financial independence and have no fiscal need to work. Others may find that a few hours of work increases their financial security, stability, and well-being. Those not needing income might find that their life satisfaction increases by being around others in the workplace, particularly if the job has less stress and responsibilities than it did during their working years. More retirees are pursuing “encore careers,” which enable them to choose work they may have always wanted to do but could not pursue due to other obligations.



Enrique Silva

Volunteering
Volunteer work not only fills the day but also creates meaning and purpose. It enables you to utilize the skills and talents honed throughout your career for the benefit of others.

Exercise
Exerting yourself physically and mentally helps keep you fit. Engaging in conversations, solving puzzles, and playing board games keep your mind active.

Group Hobbies
Make time to enjoy a hobby in the company of others. Share your time with like-minded people, many of whom may become friends. This is important. You have spent your working life in the company of others. Apart from a few close co-workers who have become friends, you may lose this network once you retire. It’s important to replace this form of social interaction with another so that you don’t become isolated in your retirement.

Your Retirement To-Do List

1. Find out how much your social Security benefit is expected to be by calling (800) 772-1213 or by visiting ssa.gov.
2. If you have a pension, ask your employer for a benefits estimate.
3. Discuss with your spouse or life partner the type of retirement you want and how to achieve it.

Solo Hobbies
Consider leisure time by yourself to allow you to reflect and contemplate things. Find something you want to do on your own.

Socializing
You should also find time to arrange regular get-togethers for dinner, movies, cultural and sporting events, civic interests, and faith-based activities with your family, grandchildren, and close friends. Maintaining meaningful long-term relationships when you retire is important.

Learning New Skills
When you retire, you may want to learn new skills or obtain additional knowledge. Whether it’s a day or evening course at a college or teaching yourself how to play the piano, learning something new is rewarding and helps boost your self-esteem.

Travel
Traveling is an invigorating way of spending your time and experiencing different cultures, lifestyles, and geography. With a little planning, you can enjoy your retirement years worry-free.

♦ ♦ ♦ ♦ ♦

Dr. Carolyn Messner is director of Education and Training at CancerCare and past-president of the Association of Oncology Social Work. Enrique Silva is a volunteer in the Education department at CancerCare.

This article was originally published in Coping® with Cancer magazine, September/October 2011.

From Surviving to Thriving

by Mike Verano

It takes but one positive thought, when given a chance to survive and thrive, to overpower an entire army of negative thoughts. – Robert Schuller

A friend asked me recently why, after everything I have been through since my cancer diagnosis in 2009, I don’t refer to myself as a survivor. The best answer I could come up with at the time was, “I’m not ready yet.” This less than articulate response got me thinking about survivorship and what it takes to move beyond the role of cancer patient.

I soon found myself wondering about the very word survivor. If we look at the roots of the word itself, we see that it means, according to the good folks at the Oxford Dictionary, “a person who survives, especially a person remaining alive after an event in which others have died.”

According to the American Cancer Society, “A survivor includes anyone who has been diagnosed with cancer beginning with his or her day of diagnosis, throughout treatment, and after remission.” This is an interesting description, which I understand at a very base level. It is a positive message that attempts to help those of us diagnosed with cancer begin to immediately reframe our experience from helpless victim to courageous warrior in the “battle of our lives.”

My resistance to taking on the title of survivor has two primary roots. The first is the somewhat irrational and superstitious response to a universe that often feels very arbitrary in how it hands out its sufferings. I have a deep-seated fear that if I’m so bold as to declare myself the winner in the battle against cancer, the universe might respond by bringing cancer back into my life as a way to remind me just who is in charge.

The much deeper root has to do with my need to see cancer in a different light – to make sense of a life that includes the diagnosis of cancer not as something to be at war with but to incorporate into a new sense of self. I want more from my life than simply to still be standing after facing cancer. I want to find meaning, not in the absence of cancer, but in spite of it, and maybe, just maybe, because of its appearance in my life.

Thriving requires awareness of the present moment without the need to judge what is happening.

I’ve discovered that I prefer the idea of thriving after a cancer diagnosis instead of simply surviving. To thrive, according to the Oxford folks, means to “prosper or flourish.” I find comfort in the fact that my life has become richer in many ways over the past year and a half since I joined the club of those who have faced cancer surgery, radiation, and chemotherapy.

The diagnosis of cancer has pushed me deeply into the waters of life’s mysteries. What’s it all about? What’s my purpose here? What happens when it’s all over? These are no longer just philosophical quandaries; they are dayto- day challenges that, while sometimes unnerving, open you up to a profound sense of awe at the daily miracle that is simply living.

Thriving is not doing; it is being, at a very deep level. It is giving up the need to tell a story about your life and get on with living that life. Thriving requires awareness of the present moment without the need to judge what is happening. In this way, life blossoms like a flower that has no regard or worries as to whether it is a rose, a lily, or a humble daisy.

All of this brings me back to the initial question, “Am I a cancer survivor?”

My current response is “Sure, why not? But it doesn’t end there.” Whether or not my cancer returns seems mostly beyond my control. Whether or not I continue to prosper and flourish, to expand my present-moment awareness, is something within my power to accomplish. Thriving is beyond the confines of any particular life experience and is the activity of life itself.

To become the vessel through which life expresses itself seems to me the ultimate purpose of living. There is no cancer, no illness, and no suffering that can stand in the way of that process. I take great comfort in the knowledge that despite my mind’s occasional wanderings into the lands of “What’s next?” and “What if?” it will always find a home in the here and now.

♦ ♦ ♦ ♦ ♦

Mike Verano is a thymic cancer survivor.

This article was originally published in Coping® with Cancer magazine, September/October 2011.

Breast Cancer Survivor Hoda Kotb

by Laura Shipp

“You can’t scare me.” That’s the powerful mantra Hoda Kotb took on after beating breast cancer. It may have even helped the Dateline correspondent land her current gig as cohost of the fourth hour of NBC’s Today, alongside Kathie Lee Gifford.

“Those four words can work wonders for you,” Hoda reveals in an interview for Coping® magazine, letting me in on her hard-knock secret. “At the time I finished my surgery [for breast cancer], NBC was starting up the fourth hour of Today. And I did something I never dreamt I would ever do – go to the big boss and ask for the job. I’m one of those people who wait to be noticed. But for the first time in my life, I hit 52 in the elevator bank and went up to see Jeff Zucker [who was CEO of NBC Universal at the time]. Without cancer, I don’t think I’d be sitting next to Kathie Lee Gifford right now, because I wouldn’t have had the guts or the moxie.”

To understand how Hoda came about her newfound fearlessness, we have to go back to 2007. In her memoir, Hoda: How I Survived War Zones, Bad Hair, Cancer, and Kathie Lee, Hoda refers to 2007 as “the year my body and my heart broke at the same time.” Within the same week, Hoda was knocked not just one, but two, devastating blows – a breast cancer diagnosis and the end of her marriage.

“Cancer is a part of me, but it’s not all of me. It did shape me, but it doesn’t define me.”

Always the optimist, Hoda managed to find the silver lining amidst her personal storm. “I think you have a finite amount of grief to go around,” she says. “It’s like having two kids instead of one. You can’t worry about the one who’s coloring on the wall with the crayons because the other one is trying to swallow one of your Advils. In a weird way, having those twin tragedies forced me to keep my head above water.”



Hoda Kotb and Kathie Lee Gifford share a few laughs on NBC’s Today.

photo by Peter Kramer/NBC/NBC NewsWire

Hoda underwent a mastectomy in March, coupled with immediate TRAM flap reconstruction – a grueling eight-hour surgery. Since the cancer had not spread to her lymph nodes, she decided against additional treatment. Instead, she keeps regular follow-up appointments with her physician to make sure the cancer hasn’t come back.

Regarding her decision to forgo adjuvant therapy, Hoda says, “At the end of the day, when you make whatever choice you make, you have to be able to put your head on the pillow and sleep. Everyone has to make their own decision, but I’m comfortable with mine.”

Hoda’s next hurdle was deciding whether to speak publicly about her diagnosis. “The idea about going public was a tricky decision,” Hoda says, “because cancer is a part of me, but it’s not all of me. It did shape me, but it doesn’t define me.”

Hoda ultimately decided to share her breast cancer experience with Today show viewers that October, Breast Cancer Awareness month, fittingly. Although she admits that she sometimes wonders what her life would be like if her cancer was still a secret, in the end, she says, “I would choose the path I took a million times over.”

That doesn’t mean, however, that talking about something as personal as breast cancer on national TV came easy. As a journalist, she’s long been at ease asking the tough questions, but when she sat down with Ann Curry to discuss her own cancer, Hoda admits that it was a little bit terrifying to be on the other side of the interview.

“It really did change my perspective on what I do for a living, because it’s a very vulnerable spot to be in,” she says. “I’ve always known that, but I don’t think I realized the extent of it until I was actually sitting in the other chair.”

Four years later, she’s still at home in her Today show anchor chair – right next to Kathie Lee – with a new perspective, a fearless attitude, and a cancer-free left breast. “I used to wake up and think of myself as someone with cancer,” Hoda says, “and now, now I just wake up.”

♦ ♦ ♦ ♦ ♦

This article was originally published in Coping® with Cancer magazine, September/October 2011.

A Letter To Jesus

by John Ward

Dear Jesus,

I’m sending this letter to You because I’ve been thinking a lot about heaven lately, and I didn’t know where else to send it. I heard that You once said that we are never alone, and that You are always with us, so I believe that You will get this message.

I’m sure You know that I have lived here on earth for a long time, and in that time many issues have taken place, some good and some bad, some I am so proud of, and others I am too ashamed to admit. I know You are aware of everything that has taken place, and sometimes in my simple human mind, I wonder if You are making a list of all the good verses the bad. But that’s scary, until I realize that God is way beyond that misconception.

As we humans travel on our journey through life, we are sometimes stricken with some health issues that can be so devastating and debilitating that we wonder what awful thing we have done to bring about this punishment. I’m referring to the time that I was stricken with Guillain-Barre Syndrome, and the whole world was asking, “what’s that?” And what about the time the Dr. said,” John, you have cancer;” and several years later, “John, you are diabetic.” If I were not talking to You Lord, I would talk about scared, or about anxious, or even depression. And maybe in my weaker moments, I would even put the blame on You, Jesus. But quite soon after each setback, I found some precious gifts that You had given to me long ago; gifts that enabled me to rise far above the cancer; far above the diabetes.

You gave to me that precious gift of faith in You. You gave to me the intelligence to grow in my situation, and to use all of my issues in a positive and constructive manner. I realize these words may sound a little hollow Lord; overused and maybe meaningless. So please allow me to elaborate just a little. Remember when I was very young, my dad said my prayers with me at night, read me poems, and sent me to good schools to learn more about you? That was my great introduction to You, and from those early years, I grew in intelligence to know You, and to relate to You, and to depend on You. Sure, sometimes I failed miserably at what You wanted from me, but never did You leave me. Was it some of my health issues that eventually made me come to this realization? And wasn’t it intelligence that sent me on this path to speak with others about this mystery that I had solved?

Now, about heaven Lord: I truly believe that heaven is a place so beautiful, so very wonderful in every respect; that it is far beyond our imagination to grasp the reality of it. There will be no more worries, no more fear, no more sickness, nor pain. And what’s more; it will be forever and without end. I believe this to be so true, my Lord, and I beg of You to understand where I’m coming from when I ask You if I can stick around earth for a while longer. I truly don’t mean to be ungrateful for the place that You have prepared for me, but won’t I miss the ones I love so very much, and I’m very happy here for a while longer? Perhaps we’ll talk more about it later.

♦ ♦ ♦ ♦ ♦

New Guidelines of Care for Treatment of Melanoma

 

Based on an extensive review of scientific literature and the recommendations of recognized melanoma experts, the American Academy of Dermatology (Academy) has released updated evidence-based guidelines for the treatment of melanoma, the deadliest form of skin cancer.

Published online in the Journal of the American Academy of Dermatology, the Academy’s new guidelines of care for primary cutaneous melanoma focus on biopsy techniques, pathology, surgical treatment, (including sentinel the use of lymph node biopsy), and long-term follow-up care.

“Melanoma is a serious public health issue, as the number of cases has been increasing at an alarming rate — especially among younger people,” said dermatologist Ronald L. Moy, MD, FAAD, president of the Academy. “There are many factors that must be considered when diagnosing and treating melanoma, and these new guidelines offer physicians clinically sound recommendations on how to treat melanoma patients and potentially increase their chance of survival from this deadly disease.”

Melanoma is characterized by the uncontrolled growth of pigment-producing cells. If a mole is new, different, or changing, it should be evaluated by a dermatologist as soon as possible. Melanoma incidence rates have been increasing for at least 30 years. Since 1992, incidence rates among Caucasians have increased by 2.8 percent per year in both men and women.

The first step for a definitive diagnosis of cancer is a biopsy of the lesion. If melanoma is diagnosed, the primary treatment is surgical removal of the lesion and surrounding tissues.

It is estimated that there will be 123,590 new cases of melanoma diagnosed in the U.S. in 2011 — 53,360 noninvasive (in situ) and 70,230 invasive. Dermatologists agree that the treatment of noninvasive melanoma (in situ) and invasive melanoma have some differences but also some key similarities. The guidelines explain that with a diagnosis of invasive melanoma, a detailed patient history is imperative and a thorough examination of the skin and lymph nodes should be performed to determine the extent of the spread of the disease. However, for patients with melanomas of any thickness, the guidelines do not recommend baseline blood tests and imaging studies because clinical research does not support their use unless suspicious signs and symptoms are present.

“Melanoma treatments should always be tailored to meet individual patients’ needs,” said Dr. Moy. “To ensure the most successful treatment, early detection of melanoma is essential. Studies show that the five-year survival rate for people whose melanoma is detected and treated before it spreads to the lymph nodes is 98 percent.”

Melanoma patients have a significantly increased risk of developing additional melanomas. The guidelines recommend at the minimum an annual follow-up with a dermatologist, but range from every three to 12 months based on the individual’s history and risk factors. All melanoma patients should perform monthly skin self-examinations. To download a body mole map and learn how to perform a self-exam, visit www.aad.org/checkspot.

To learn more about melanoma, visit Dermatology A to Z on the Academy’s website.

♦ ♦ ♦ ♦ ♦

Hereditary Breast and Ovarian Cancer Week

Join the Celebration: HBOC Week September 25th - October 2nd

 

In 2010, history was made with FORCE’s successful effort to pass a Congressional resolution declaring the first-ever National Hereditary Breast and Ovarian Cancer (HBOC) Week. This year's celebrations will be held September 25 through October 2, 2011.

The goal of HBOC Week is to raise awareness about hereditary cancer. HBOC Week marks the transition between National Ovarian Cancer Awareness Month and National Breast Cancer Awareness Month and recognizes anyone affected by hereditary breast or ovarian cancer, including women and men with BRCA mutations, people with a family history of cancer, breast and ovarian cancer survivors, and previvors, individuals who carry a strong predisposition to cancer but have not developed the disease.

An estimated three-quarters of a million Americans carry an inherited BRCA mutation but nearly 90% of these individuals don’t know about their risk. National HBOC Week aims to help change that.

And, it all starts with a celebration! Attend an event in your local area and celebrate with a group of FORCE friends. Local groups and volunteers will be holding film screenings, art exhibits, denim swaps and more. Join these events and the Passing of the Torch events (highlighting the link between hereditary breast and ovarian cancer). Click here for a list of scheduled events. It all starts with a celebration!

 

 

 

 

 

♦ ♦ ♦ ♦ ♦

For more information, visit FORCE: Facing Our Risk of Cancer Empowered.

What is Recreation Therapy?

And how can it help someone facing cancer?

by Gretchen M. Gerhardt, CTRS/R

Think about the role recreation has played in your life. Where does it fall on your priority list? Where would you like it to fall? Perhaps recreation no longer seems like a possibility. The good news is there is a type of therapy that may provide assistance in helping you to prioritize recreation while also enhancing your health.

Recreation therapy is a treatment service that aims to enhance quality of life through leisure and recreational interests while maintaining or improving all areas of health. Recreation therapists may utilize previous leisure pursuits and incorporate them into therapy, as well as provide assistance in maintaining preferred recreational pastimes.

Recreation therapists serve a variety of populations in a variety of settings. They may work in community-based organizations, inpatient healthcare facilities, outpatient settings, schools, or even in someone’s home. Their services may be provided in both large and small group settings or with individuals one on one. For those restricted to bed, services can be provided at a person’s bedside.

Recreation therapy involves an array of therapeutic approaches, such as aquatic therapy, music therapy, art therapy, dance or movement therapy, creative-writing therapy, laughter therapy, adapted sports, animal-assisted therapy, horticulture therapy, and more. Recreation therapy is holistic. A recreation therapist assesses a person in all domains – physical, social, communicative, emotional, cognitive, and in some cases even spiritual. Beyond this, a recreation therapist assesses past recreation and leisure pursuits and attempts to utilize these to create an individualized treatment plan.

A recreation therapist assesses a person in all domains – physical, social, communicative, emotional, cognitive, and in some cases even spiritual.

For those with a limited leisure lifestyle, a recreation therapist may provide leisure counseling to identify a person’s interests and encourage him or her to carry out new pursuits. Besides assisting with identifying interests, a recreation therapist supports individuals in community outreach by providing education and awareness of community resources.

For those facing cancer, recreation therapy can provide a variety of services catered to an individual and his or her particular needs and interests. This may also include working with friends and family. As you may already know, cancer not only affects the individual, but it also has an influence on those involved in that person’s life. A recreation therapist can assist in implementing friends and family programming where loved ones can participate in a project together, whether it’s pumpkin carving, storytelling, or legacy building.

Being involved in activities of interest may help survivors build endurance when attempting to regain strength during and after illness. When you are participating in something you love, you are inclined to work harder. For example, a person may find the strength to reach out to pet or brush a dog during animal-assisted therapy when they may not have been able to find that energy previously. The simple activity of petting a dog may provide temporary relief of pain, depression, and anxiety. It may enhance feelings of comfort and connectedness and may even improve physical function. This could also be true for someone involved in a drum circle, a laughter therapy group, or a relaxation program.

Some pursuits may be individual, may be one on one, or may involve groups. Some may improve physical or cognitive function, while others may provide social interactions and improve communication skills. Many simply enhance overall well-being. Sometimes, a pursuit provides a multitude of benefits and enhances numerous areas of function. The overall goal is the same. Recreation therapy enhances quality of life.

What is it you love doing? What are you passionate about? Challenge yourself to think about what’s most fulfilling in your life and prioritize it.

♦ ♦ ♦ ♦ ♦

Gretchen Gerhardt is a certified therapeutic recreation specialist at Bailey-Boushay House in Seattle, WA.

If you’d like to learn more about recreation therapy or find a practicing recreation therapist in your area, visit the American Therapeutic Recreation Association website at atra-online.com. Chapter affiliates or state associations are located under the networking tab. These affiliates can put you in touch with local recreation therapists.

This article was originally published in Coping® with Cancer magazine, July/August 2011.

Face the World with Confidence

Beauty Tips & Tricks for People with Cancer

by Ramy Gafni

Maintaining a positive attitude during cancer treatment is imperative in order to get through treatment as smoothly as possible. Simply taking the action of seeking out a wig (or shaving your head and embracing it!), going for a makeup lesson, or even reading this article is a positive and empowering step. By taking steps to address the physical side effects of treatment, you are taking control in a situation where so much is beyond your control.

It’s difficult enough to undergo treatment, but having to do it while a stranger is staring back from the mirror can be devastating. I remember feeling lucky that I was a makeup artist when I was undergoing chemotherapy because I knew what to do to correct my sallow complexion, extremely dark under-eye circles, and hair loss. The good news is that I’m a minimalist and none of these corrective tricks is complicated or difficult to achieve.

I find there are a few basic steps that can counteract brow and eyelash loss, dark circles, and complexion issues and help create a healthy glow even when you might not be feeling your best. The following routine is universally flattering for any age, gender, or ethnicity.

step one
Apply a moisturizing concealer around the entire orb of your eyes, including from the lash line to brow bone. This will conceal dark circles and redness and help hide fatigue. If you prefer a non-makeup solution, opt for an illuminating eye gel, which is a moisturizer with light reflective properties. The eye gel will not offer as much coverage as concealer, but it will diminish the appearance of dark circles, redness, and fine lines around the eyes and will visibly brighten your eyes.

The good news is that none of these corrective tricks is complicated or difficult to achieve.

step two
Apply bronzer everywhere on the face where the sun would naturally give you color – on your cheeks, along your hairline, on your nose and chin. Bronzers can be powder, liquid, or gel. I prefer bronzer to self-tanner because you can control how much color you’re achieving with bronzer and there are no surprises later on, which can sometimes occur with self-tanner. For a less “makeup-like” solution, opt for a powder blush in a nude shade if your skin becomes very pale, or a rosy shade if your complexion becomes sallow (yellow). A rosy or pink blush will counteract the sallowness.

step three
For brow loss, choose a wax-based brow filler (it adheres better than a powder) in one shade lighter than your hair color if you have partial hair loss. If you have complete hair loss, choose a color that matches your hair color as closely as possible. Apply along your natural brow line, and blend so that it looks like a natural eyebrow and not too made up. If you feel it doesn’t look natural enough, pat on a little translucent powder. This will make the brow look more like real hair. If you have lost your brow hairs completely and have difficulty recreating the look of your natural eyebrows, do not overthink it – the idea is to create the illusion of an eyebrow. It doesn’t have to be perfect. A good idea is to use a photo of yourself prior to beginning treatment as a guideline.

step four
For eyelash loss, you do NOT want to apply false eyelashes on a daily basis. It can be cumbersome, and you are more susceptible to infection during treatment, so save the false lashes for special occasions. For your everyday look, you can create the illusion of a fuller lash line by using a neutral eyeliner (I recommend mahogany or brown/black) in a pen, pencil, or powder formula. I don’t suggest liquid liner for creating the illusion of eyelashes because liquid liner will dry to look like paint. A powder can work well if applied with a moistened eyeliner brush, but the easiest formula to work with is a pen or pencil (wax based). Apply the eyeliner as close to the roots of your eyelashes as possible. It’s OK if you can’t create a perfectly straight line because you can smudge it with a cotton swab, and the smudged eyeliner looks even more like your real lashes. Liner can also be applied to the lower lash line if desired, but apply it with a softer hand than you do the upper lash line.

step five
Apply a colorless highlighter to your eyelids (near tear ducts, where we tend to get the darkest) and high up on your cheekbones. This will further brighten your eyes and add a healthy glow to your complexion. I always blend in a touch more blush or bronzer after applying the highlighter.

step six
If your lips get dry, apply a lip balm or lip oil to moisturize and condition. Many lip glosses are very conditioning and offer the added benefit of color. A slightly brighter than usual lip color can also brighten your entire appearance. If you tend to steer away from bright colors, a good way to wear one is a bright sheer gloss. You’ll get the impact of color, but in a very wearable and moisturizing way.

step seven
You may find during treatment that products that have always worked well suddenly don’t. Your complexion can be affected by treatment, and you may need a more intense moisturizer, or you may need to switch to products for more sensitive skin. I always suggest that when in doubt, try Aloe Vera gel (a great moisturizer that is wonderful on skin irritated by radiation) or baby products. Baby wash and cleanser are made for delicate baby’s skin, so they are usually a safe bet during treatment.

While you can’t fake good health, you can certainly fake the look of good health during treatment. Taking charge of these temporary changes in your appearance will help you face the world with confidence. Many people end up using these tricks long after treatment is over. Feel free to experiment with colors and find what works best for your individual needs. Remember, the most important beauty tool is an open mind.

♦ ♦ ♦ ♦ ♦

Ramy Gafni is a New York-based celebrity makeup artist, creator of RAMY Beauty Therapy® cosmetics, and author of Beauty Therapy – The Ultimate Guide to Looking and Feeling Great While Living with Cancer. For more information about Ramy or his cosmetics line, visit www.RAMY.com.

This article was originally published in Coping® with Cancer magazine, July/August 2011.

September 15, 2011 is World Lymphoma Awareness Day

 

Thursday, September 15, 2011 marks the 8th anniversary of World Lymphoma Awareness Day! Look for Node on your cell phones (Lymphoma 101 in 9 different languages) and in your emails to ensure that you know the signs and symptoms of lymphomas, leading to earlier diagnosis and treatment, and ultimately resulting in better patient outcomes.

This day is dedicated to raising awareness of lymphomas. Did you know there are over 45 subtypes! Launched in 2004 and now an established date in the health calendar, WLAD provides a focus for you as doctors, nurses, patient groups, patients and families and friends to join forces in a united campaign to inform the public about lymphoma, its signs and symptoms and how it affects lives of millions of people around the world. Get involved!

Why have WLAD?
Despite the fact that one million people worldwide live with lymphoma and nearly 1,000 people are diagnosed with this cancer every day, research shows:

1. Lymphomas are not understood; are often misdiagnosed and often treated for the misdiagnosis The 2010 LC Nodes No Border global patient survey told us that although most people had heard of lymphoma prior to diagnosis, they knew very little about it and almost never connected their symptoms to it.
2. Lack of awareness of lymphoma signs and symptoms results in late diagnosis,
   • 40% of patients took over 2 months + to get diagnosed
   • 11% of those took 1+ years
   • 2% actually took over 4 years
   • 56% of the patients went to the doctor with recognizable lymphoma signs and
   • only 19% of these patients suspected lymphoma
3. Cause is yet unknown. Without known causes, we cannot pre-screen or prevent lymphoma from occurring. We are just beginning to uncover the causes and risk factors through the The InterLymph Consortium, or formally the International Consortium of Investigators Working on Non-Hodgkin's Lymphoma Epidemiologic Studies, an open scientific forum for epidemiologic research in lymphomas. The consortium is a group of international investigators who have completed or have ongoing case-control studies and who discuss and undertake research projects that pool data across studies or undertake collaborative research on the causes and factors of lymphomas.

Through raised awareness of lymphoma, people around the world will better recognize the signs and symptoms, which leads to earlier diagnosis.

♦ ♦ ♦ ♦ ♦

For more information, visit the Lymphoma Coalition.

Free Mobile Apps for Cancer Survivors Now Available

 

The American Society of Clinical Oncology has released Cancer.Net Mobile for the iPhone, iPad, and iPod Touch – a free app designed to help people with cancer and their caregivers plan and manage cancer treatment and care. Cancer.Net Mobile is available for download in Apple’s App Store.

The app includes comprehensive, doctor-approved information on more than 120 cancer types. In addition, Cancer.Net Mobile includes interactive tools for people with cancer and caregivers to keep track of questions to ask their doctors, record voice answers, and choose from frequently-asked questions suggested by Cancer.Net experts; save important information about prescribed medications, including photos of medicine labels and bottles; track the time and severity of symptoms and side effects during treatment; and learn about new cancer care topics through weekly podcast and video interviews with physicians.

The Cancer Support Community has launched CancerSupportSource™, a free mobile app providing people with cancer and their caregivers a unique set of tools addressing the physical, social, and emotional concerns related to living with cancer and its treatment. The app is available for download in the iTunes Store and is designed for use with the iPhone and iPod Touch.

CancerSupportSource helps people with cancer monitor their concerns over time, record thoughts and questions in a personal journal, access educational information and a community support network, and report progress to their healthcare team. In addition, CancerSupportSource allows users to monitor common concerns, such as fatigue, difficulty sleeping, sadness, anxiety, and pain; track potential life worries, such as family, work, money, and nutrition; and record thoughts and questions in a personal journal.

♦ ♦ ♦ ♦ ♦

This article was originally published in Coping® with Cancer magazine, July/August 2011.

How to Be a Man after Prostate Cancer

by Rabbi Ed Weinsberg, EdD, DD

After his prostate surgery, John lost his ability and desire to have sex with his wife, Linda. She was distraught when he literally turned his back on her. She wondered if John was deliberately trying to sabotage their relationship, as well as harming himself, by disregarding the penile rehabilitation his doctor advised.

It is heartbreaking when we men frustrate our wives or partners by failing to communicate our feelings or refusing to seek help after prostate cancer treatment. It is particularly unsettling, though understandable, that we often don’t convey our innermost thoughts when we feel our manhood has been diminished. This happens all too frequently in the wake of prostate cancer treatment side effects like losing sexual potency or desire.

Men who’ve been through surgery, radiation, or other prostate cancer treatments tend to view erectile dysfunction with great dismay. It’s a tall order to overcome our angst after years of linking our masculinity to our sexual functioning. This concern is deeply ingrained, given many men’s lifelong narrow understanding of what it is to be a man.

Revising Our Views About Masculinity
Part of being a man is becoming aware of what goes on around and inside us. In addition, manhood demands mature action, such as deciding to revise our attitudes and outlooks and act accordingly. How else can we renew our relationships with our significant others?

It’s a tall order to overcome our angst after years of linking our masculinity to our sexual functioning.

Conversely, it’s childish, not “manly,” when we attempt to evade our “altered” circumstances due to surgical trauma or biochemical castration. Escapism may seem easier in view of genuine emotional and spiritual pain, but it is ultimately self-defeating. Why? Because it leaves a man with ED feeling, well … impotent. Redefining our masculinity is therefore the first order of business for survivors who have endured prostate cancer treatment side effects.

Turning to Medical Therapy
Men can offset the masculinity they feel they’ve forfeited by turning to medical technology. Those who sense they are sexually MIA (missing in action) can take definitive action by asking their doctors for Viagra, Cialis, or Levitra, as we’re reminded in ubiquitous TV ads. Vacuum erection devices, which work for many men with ED, and MUSE penile suppositories or alprostadil injections can also help men “get it up.”

Because such medical approaches are not right for everyone, some men opt for internal penile pumps. These instantly inflatable devices may be helpful in restoring men’s deflated egos. It is not much different for many women who feel breast implants help restore their femininity after breast cancer treatment.

Learning to Communicate
Enhancing sexual intimacy requires more than mechanics and synthetic hormones. It’s just as important for men and their partners to sharpen their relationship skills by learning to communicate openly about their shared sexual needs. For that reason, in January 2007, after some erectile difficulties even preceding my surgery, my wife and I visited a sex therapist. She spoke with us about exploring specific avenues for increased intimacy and reminded us that sex begins in the mind.

For me, sex therapy was not just about acquiring techniques for “getting it on” as much as it was about learning to reframe what sexual intimacy is all about. Months later, I fully grasped that making love – not just “having sex” through coitus – can be prolonged through sensate focus. We rediscovered the mutual joy of physical sensations in response to touching, seeing, smelling, kissing, and simply cuddling. In that regard, foreplay became “coreplay.”

To become “real men,” we need to make use of medical technology as needed. But we also need to learn to communicate openly with our partners. Taking such action will reinforce our masculinity while meeting the needs of those we love.

♦ ♦ ♦ ♦ ♦

Ed Weinsberg, an ordained rabbi with a doctorate in gerontology, is a prostate cancer survivor, patient healthcare educator, intimacy coach, public speaker, and author of Conquer Prostate Cancer: How Medicine, Faith, Love and Sex Can Renew Your Life. He provides tips on coping with prostate cancer through his website ConquerProstateCancer.com.

This article was originally published in Coping® with Cancer magazine, July/August 2011.

September is Leukemia, Lymphoma and Myeloma Awareness Month

Tremendous advances have been made to treat blood cancer but the battle is far from won

 

Remarkable progress has been made in treating patients with blood cancers, with survival rates for many having doubled or tripled, and in some cases quadrupled since The Leukemia & Lymphoma Society (LLS) was founded in 1949.

"I have personally seen the progress in cure rates and treatments from when I experienced leukemia in 1994," says survivor Nikki Henshaw. "These changes have dramatically improved the quality of life for those who are battling cancer."

Survival rates for children with acute lymphocytic leukemia, the most common childhood cancer, have risen over the past 40 years from 3% to approximately 90% today; Hodgkin lymphoma patient survival rates have doubled to 86% since the 1960s, and the five-year survival rate has increased from 25% in the mid-seventies to 41% for all myeloma patients, and patients diagnosed in the last decade had a 50% improvement in overall survival.

Yet, more than 1 million North Americans are fighting blood cancers, the third leading cause of cancer death. Every four minutes someone in North America is diagnosed with a blood a cancer, and every ten minutes someone dies.

The Leukemia & Lymphoma Society (LLS) is a beacon of help and guidance to those touched by blood cancer and each September LLS observes Leukemia, Lymphoma and Myeloma Awareness Month, to shed light on these diseases and let the public know that there are resources available for blood cancer patients and their families.

"Awareness Month is an opportunity to increase the public's understanding of blood cancers and encourage people to support the funding of research to find cures and education programs to help patients have the best possible outcomes throughout their cancer experience," said LLS President and CEO John Walter.

Since its inception in 1949, LLS has invested more than $814 million in research to find cures and better therapies. LLS supports investigators' efforts to find new molecular targets for treatment and potential immunotherapies, and helps them translate their laboratory findings into more effective therapies for patients. Its Therapy Acceleration Program (TAP) is a bold initiative to advance therapies with strong prospect so providing near-term benefit to patients diagnosed with blood cancers.

Through its patient services programs, LLS offers a comprehensive array of education and support services to blood cancer patients and their families. There are family support groups, free patient education workshops featuring health experts, and First Connection - a peer-to-peer support program that matches newly diagnosed patients with trained volunteer survivors. A back to school program help children treated for cancer transition back to school. LLS also provides financial assistance to patients with significant financial need and an insurance co-pay assistance program.

♦ ♦ ♦ ♦ ♦

LLS's web site - www.lls.org is the definitive resource for information about blood cancers, and information specialists - master's level social workers and health educators - are available to provide information, support and resources to patients and their families and caregivers.

Supporting Your Partner Through Cancer

 

Many couples today face the challenge of battling cancer together. “Cancer not only affects those diagnosed, but also the partners who love and care for them,” says Robert Miller, MD, radiation oncologist at Wellspring Oncology in Pinellas Park, FL. “Thousands of people are diagnosed with cancer every day, and thousands more step into a new supportive role.”

However, there is no handbook to guide those in taking on this supportive position, leaving many spouses feeling frustrated and confused. “For many people living with cancer, support from their spouse is extremely important in helping them battle the disease,” says Dr. Miller. “Often, however, partners feel unsure of the best way to offer that support. They know that they want to support their spouse, but they just aren’t quite sure how to go about it.”

How, then, does one face this role head-on and help the one they love most in their fight against cancer? Dr. Miller offers some advice to help spouses provide the support their partners need.

Communication Is Key
One of the best ways to offer support to your partner is through communication. Discuss what you are both thinking and feeling on a regular basis, and allow your spouse to talk for as long as he or she needs. Also, encourage your partner to express his or her true feelings, both good and bad. Understanding your spouse’s thoughts and emotions is key to supporting them.

Spend some time together focusing on one another, not cancer.

“It’s so important that a couple communicate with one another during such a difficult time,” says Dr. Miller. “In order to effectively support your partner, you have to know what he or she needs from you. There’s no better way to find out than to ask.”

Dr. Miller also reminds supporting partners that these needs may change often. For those living with cancer, emotions and the needs that come with them can differ from one day to the next, so being in tune with those is essential to providing the best support you can.

Let Them Decide
During this journey, your spouse may have to make some difficult decisions regarding his or her health. Be supportive of these decisions, even if they aren’t the ones you may have made. While the two of you are on this journey together, it’s important to remember that it’s your partner who is living with the disease. Offer your input and discuss your fears, but allow your spouse to decide what he or she thinks is the best choice.

Don’t Forget Yourself
The best way to make sure you have the physical and emotional ability to continue caring for the one you love is by keeping yourself healthy. When your partner is living with cancer, it can be difficult to focus on your own needs. However, it’s important to remember self-care, as well. Taking a moment away will not only allow you time to focus on yourself, it will also make you a better caregiver for your spouse.

“It’s common to spend less time on yourself when you’re caring for a spouse with cancer,” says Dr. Miller, “but if you don’t take care of yourself, it will be much more difficult to care for your partner. Taking time for yourself will be beneficial for both of you.”

So spend a little time on yourself. Take short breaks and do something active, like going for a walk or spending an hour at the gym, and try to maintain a healthy diet, as well. Exercise and eating well may seem like the least of your worries, but it’s important for the well-being of both you and your spouse.

Remember Your Relationship
Even though you’ve taken on this new supportive role, it’s important to remember that you are also a spouse. While your partner may need a caregiver, he or she also needs that relationship that was there before the cancer diagnosis. “It’s easy to get caught up in the caregiver role, but don’t forget to also be a spouse,” says Dr. Miller. “Even during such a difficult time, couples should still continue being couples.”

So spend some time together focusing on one another, not cancer. If your partner is feeling well enough, go out for a date night. Or if your spouse isn’t feeling up to a night out, just enjoy time with one another at home. No matter how you go about it, spend time together as a couple and continue to be a spouse to your partner.

Living with cancer can be one of the most difficult times a couple can face. However, as a partner, you have the ability to give the support, love, and encouragement that your spouse needs the most to battle this disease.

♦ ♦ ♦ ♦ ♦

This article was originally published in Coping® with Cancer magazine, July/August 2011.

September is National Ovarian Cancer Awareness Month

A Proclamation by the President of the United States of America

 

Ovarian cancer continues to have one of the highest mortality rates of any cancer, and it is a leading cause of cancer deaths among women in the United States. This month, we remember the mothers, sisters, and daughters we have lost to ovarian cancer, and we extend our support to those living with this disease. We also reaffirm our commitment to raising awareness about ovarian cancer, and to advancing our screening and treatment capabilities for the thousands of American women who will be diagnosed this year.

Ovarian cancer touches women of all backgrounds and ages. Because of a lack of early symptoms and effective screening tests, ovarian cancer is often not detected in time for successful interventions. It is crucial that women know how to recognize the warning signs of gynecological cancers and can detect the disease as early as possible. I encourage all women to learn about risk factors, including family history, and to discuss possible symptoms, including abdominal pain, with their doctor. Now, because of the Affordable Care Act, a wide range of preventive screenings are available to women without any copayments, deductibles, or coinsurance.

My Administration is committed to supporting the women, families, and professionals working to end this disease. The Centers for Disease Control and Prevention and the Department of Health and Human Services have started a campaign to educate women on cancers affecting reproductive organs. The National Cancer Institute is researching new ways to detect ovarian cancer, publishing a comprehensive study of the most aggressive types of ovarian cancer, and conducting clinical trials for new combinations of therapy. And this year, agencies across the Federal Government, from the National Institutes of Health to the Department of Defense, have committed to supporting ovarian cancer prevention and treatment research.

So many lives have been touched by ovarian cancer -- from the women who fight this disease, to the families who join their loved ones in fighting their battle. In the memory of all the brave women who have lost their lives to ovarian cancer, and in support of generations of women to come, let us recommit to reaching a safer, healthier future for all our citizens..

NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim September 2011 as National Ovarian Cancer Awareness Month. I call upon citizens, government agencies, organizations, health-care providers, and research institutions to raise ovarian cancer awareness and continue helping Americans live longer, healthier lives. And I urge women across the country to talk to their health-care providers and learn more about this disease.

IN WITNESS WHEREOF, I have hereunto set my hand this first day of September, in the year of our Lord two thousand eleven, and of the Independence of the United States of America the two hundred and thirty-sixth.

BARACK OBAMA

♦ ♦ ♦ ♦ ♦

Source: The White House, Office of the Press Secretary, at www.whitehouse.gov

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

September is National Prostate Cancer Awareness Month

A Proclamation by the President of the United States of America

 

Prostate cancer is the second leading cause of cancer-related deaths among men in the United States. The weight of this illness is felt not only by the men living with and fighting prostate cancer, but also by their families, friends, and communities who rally to care for their loved ones. As we observe National Prostate Cancer Awareness Month, we renew our commitment to reducing the impact of prostate cancer on our country by raising awareness and supporting research that will lead to better ways to detect and treat this disease.

Although the exact causes of prostate cancer are not yet known, studies show certain factors-- including age, race, and family history-- may increase the likelihood of developing the disease. African Americans, in particular, are at a higher risk than men of other backgrounds. I encourage all men, especially those who are at an increased risk, to talk to their doctors about ways they can reduce their chances of developing prostate cancer.

My Administration will continue to promote prostate cancer research and treatment and raise awareness of this illness. The Centers for Disease Control and Prevention support critical research projects and education activities that bring a public health perspective to the issues of early detection and treatment. The Department of Defense and the National Cancer Institute continue to support research, investigate new cancer detection methods, and develop innovative imaging methods and other diagnostic techniques. The Affordable Care Act also expands coverage and gives Americans greater freedom and control over their health-care choices. Reforms in the law ban insurance companies from dropping individuals when they get sick or imposing lifetime dollar limits on health benefits. These changes free cancer patients to focus on getting better instead of worrying about whether they will be able to afford their treatment.

During National Prostate Cancer Awareness Month, we reaffirm our support for prostate cancer patients and survivors, and commend health-care providers, advocates, and researchers for their dedication and perseverance. Our combined efforts to increase awareness of prostate cancer and bolster research will help save lives, and our commitment to our fathers, brothers, and sons will contribute to a brighter tomorrow for future generations.

NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim September 2011 as National Prostate Cancer Awareness Month. I encourage all citizens, government agencies, private businesses, nonprofit organizations, and other groups to join in activities that will increase awareness and prevention of prostate cancer.

IN WITNESS WHEREOF, I have hereunto set my hand this first day of September, in the year of our Lord two thousand eleven, and of the Independence of the United States of America the two hundred and thirty-sixth.

BARACK OBAMA

♦ ♦ ♦ ♦ ♦

Source: The White House, Office of the Press Secretary, at www.whitehouse.gov

September is National Childhood Cancer Awareness Month

A Proclamation by the President of the United States of America

 

Across America, thousands of courageous children fight pediatric cancer each year, facing life?threatening battles that would challenge men and women of any age. They are cared for by loving families, friends, and communities who band together to support children in times of great need. From raising money for research and hospital stays to offering compassionate assistance to families who have lost loved ones, Americans are working every day to combat childhood cancer.

Today, research advances have made pediatric cancer more treatable than ever before. The five?year survival rate for young patients has risen to 80 percent in the past half century, but serious challenges remain. Children who survive cancer frequently struggle with significant complications later in life and researchers are working to develop treatments specifically for pediatric cancer. We still know too little about the causes in young people, and cancer remains the leading cause of death by disease for children in America under the age of 15.

As we work to better understand and combat these destructive diseases, my Administration is working to lift some of the burden on families affected by them. Because of the Affordable Care Act, insurance companies can no longer deny insurance to children because of pre?existing conditions, meaning that children who are currently suffering from or have survived cancer must be covered. Insurance companies are also banned from rejecting insurance for children participating in clinical studies, in which the vast majority of children with cancer take part. And the Affordable Care Act prohibits insurance companies from imposing lifetime dollar limits on health benefits ?? freeing cancer patients and their families from worry of long?term treatment affordability. Meanwhile, the National Cancer Institute continues to conduct and fund research on the causes of these diseases, linking research on genetics and adult cancers to more effective treatments for children.

Too many children and their families have faced the harmful effects of cancer. In memory of the young lives taken from us far too soon, and in honor of the families who stood beside them, we continue to support researchers, doctors, and advocates working to improve treatments, find cures, and reach a tomorrow where all our children can lead full and healthy lives.

NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim September 2011 as National Childhood Cancer Awareness Month. I also encourage all Americans to join me in reaffirming our commitment to fighting childhood cancer.

IN WITNESS WHEREOF, I have hereunto set my hand this first day of September, in the year of our Lord two thousand eleven, and of the Independence of the United States of America the two hundred and thirty-sixth.

BARACK OBAMA

♦ ♦ ♦ ♦ ♦

Source: The White House, Office of the Press Secretary, at www.whitehouse.gov

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

High Tech Feet On the Go

 

She is smooth as silk as she glides down the runway in the latest high-fashion swimwear. She skis, plays tennis and golf. Two years ago model Ivy Gunter was inducted into the prestigious International Models Hall of Fame.

But Ivy's story takes a twist when you learn that she lost one leg from a malignancy in 1980. For some models, this might have meant an end to modeling and sporting careers. But not for Ivy, who purchased a wig to conceal her chemotherapy-caused hair loss and met with John Sabolich of Oklahoma City. There, Ivy was fitted with a prosthetic leg and an amazing new energy-storing foot that permits amputees like Ivy to remain on the go-even to walk down a runway as the eye-catching center of attention.

Ivy explains that when she lost her leg, she lost her self-image as a woman, but after being fitted with the new leg and foot she was able to regain her normal walking gait.

"The most important thing to me was regaining my femininity," the model says. "After being fitted with the leg and foot my sexual image was restored."

With the prosthesis, Ivy has been able to return to a sport she enjoys - tennis.

"Even though I sometimes miss a ball," she says, "I now have the flexibility to move around the court. And besides, I missed balls before I lost my leg."

Close to Natural
Until recently, people with a prosthetic limb were lucky if they simply could walk. Now, they not only walk, but play basketball, tennis, ski and participate in a variety of favorite sports.



Researcher John Sabolich, CPO, of Oklahoma City, performs final testing on the Sabolich Foot (pat. pending), the first total energy storing foot to mimic the human arch.

Ask Roger Charter, a double amputee from Fremont, Nebraska. Roger received new legs with special sockets and the first Sabolich Foot (patent pending) in 1988. With these new devices, Charter has demonstrated for the first time that bilateral amputees can run step-over-step. "It's as close to having my natural feet back as anything I can imagine," he maintains.

The special foot is the brainchild of John Sabolich, president of Sabolich Prosthetics and Research. John, a second generation researcher, took over the business that was begun by his father in 1946. And he has zapped the prosthetic world with his own research.

Borrowing From Biology
Leonardo da Vinci called them "a masterpiece of engineering and a work of art." Fifty-two bones, 33 joints and more than 100 ligaments, tendons and muscles make up the feet, with the bones in the feet comprising about one-quarter of the body's 204 bones. The heel, the base of the little toe, and the base of the big toe form a weight-bearing tripod with toes added for balance.

A step in slow motion begins at the heel, moves to the outside of the foot, then shifts to the base of the big toe. As you move, the whole network of muscle, bones and connective tissue - from the toe to the calf of the leg - assists in the act.

Sabolich borrowed from biology when designing the Sabolich Foot, the first prosthetic to imitate the natural structure of the foot. Mimicking the arch design, the foot functions like the bones and tendons of the human foot. The human arch copy provides a natural walking gait to those who have lost a foot or feet.

A major benefit of the human arch design is vertical shock absorption. The foot builds up, stores, transfers and releases energy, so that the person walking or running can expend less effort. Both forward and backward thrust are provided throughout the person's gait cycle - heel strike, mid-stance strike and toe-off. A cushion effect springs the amputee up and forward with every step.

Each foot is custom-made for the individual's weight, height, gait cycle, activity level and other factors. A full cosmetic covering includes vein lines, toe nails and toe prints. Fitting takes two to three days. For the next few months, until final patent approval, the prosthesis may be available free of charge to qualified persons as determined by research and development needs. Once final refinements have been made, the cost of the Sabolich Foot will be about $300-$400.

Sabolich, who graduated from New York University with a bachelor of science degree in prosthetics, has produced several innovations for amputees:

• A CAT-CAM leg for above-the-knee amputees, with a leg and socket made of ultra light titanium carbon fiber and flexible aerospace plastics.
• The Oklahoma running leg, a knee and leg running system which is designed of aerospace materials cable which snaps an artificial knee back in place after each running step.
• A myoelectric arm and hand.
• The CustomFlex Socket™, a highly contoured bone and muscle socket.

Laura McClure of Waverly, Tennessee, lost a leg to cancer four years ago but was determined not to let her handicap interfere with her love of sports. Last year, at age 17, she ran track with her energy-storing foot in the Para-Olympics at Seoul, South Korea. She credits the foot with taking seconds off her time.

With this high-tech foot, amputees like Ivy, Roger and Laura are on the go once again. But Sabolich is not at rest, either, and continues to borrow ideas from biology in researching new and better devices.

"When you see the look of a child who's never been able to walk before, or the man or woman who's forgotten what it's like to walk easily and comfortably," he says, "all the hard work and research is worthwhile."

♦ ♦ ♦ ♦ ♦

Read more of Ivy Gunter's story in the Sept/Oct 1999 issue of Coping® with Cancer.

This article was originally published in Coping® with Cancer magazine, September/October 1989.

The Patron Saint of St. Jude

Danny Thomas: His starring role is helping kids

 

Seated at a desk chair in the study of his palatial Beverly Hills estate, Danny Thomas twirls his cigar like a conductor with a baton. It's a tool, a precision instrument used to direct the music of conversation. "I admire people who know why they are born," comes the familiar, gruff voice.

"I admire people who can stand at the mirror, and when they get an answer about why they are born, pursue it."

As he builds to a crescendo, he leans forward and with absolute conviction adds: "I was born to build St. Jude."

Period. No equivocation. The voice is confident, even commanding. The legendary Hollywood actor-philanthropist founder of the St. Jude Children's Research Hospital in Memphis - isn't one to dwell on cosmic subtleties.

He is a simple, straightforward man of enormous energy and spiritual solidity who learned more than four decades ago why he was put on this earth and never, ever forgot it.

Today, Thomas is as well-known for his paternal relationship with St. Jude, as well as children's cancer research, as he is for his starring role in "Make Room for Daddy," the comedy show of the '50s that hoisted him onto a pedestal of fame and fortune few achieve.

"I was born to build St. Jude."

At 75, the funny man with the big nose is celebrating St. Jude's 25th anniversary. But even though he estimates that he's raised at least $1 billion for the 48-bed facility over the years, his financial contributions signify only a part of his belief in the power of giving.

"I am in the life-saving business, not the fund-raising business," declares Thomas, a Roman Catholic. "My religion is St. Jude. Sometimes I get angry. No, not angry. Demanding. I demand. I tell people, 'These are everybody's kids.' This is not a charity. Taking care of kids is a responsibility.

"I'm no genius. I'm dyslexic. I can't spell. But I felt there was a need for a place where you can zero in on an age group from birth through 18, a place where there is camaraderie. If one kid makes it, there is a feeling among the others, 'I can make it too.' "

Free care
Since its dedication in 1962, St. Jude has treated, free of charge, 10,000 children with the most devastating kinds of childhood maladies: acute lymphocytic leukemia, Hodgkin's disease and other forms of cancer, sickle cell anemia and pneumocystis carinii pneumonia, which is the most common and often the first infection to afflict people with acquired immune deficiency syndrome.

St. Jude is the largest pediatric cancer research center in the world and the first institution to conduct basic and clinical investigations into catastrophic childhood diseases. To qualify for admittance, patients must be referred by their own physicians after extensive testing has indicated that they're suffering from a disease that the hospital's researchers are studying.

When it opened, the hospital - which cost $6.1 million to build - was less than half its current size. Today, it's a steadily expanding, 221,000 square-foot facility that emphasizes outpatient treatment. It handles 20,000 annual visits and operates on a $50-million yearly budget.

"Danny Thomas is our spiritual leader," says Dr. Joseph V. Simone, the hospital's director. "St. Jude is a very special place. We aren't just a childrens' hospital or a research institute - we're both.

"I know this sounds corny, but it is a noble cause."

In the late '60s and early '70s, St. Jude was one of the first institutions to show results by treating several types of leukemia with innovative drug combinations; VM-26, used with other agents, stands out.

Only two decades ago, the survival rate for children with acute lymphocytic leukemia was 5%. Today, that figure has jumped to above 50%, while the odds of survival have improved for many solid tumor forms of cancer, as well as rare blood diseases.

By the year 2000, Simone predicts that the treatment of children's cancer will be quite different than it is today: "There is the possibility that treatment will be much more precise and much less toxic."

St. Jude scientists recently won more national attention for their work on a protocol that monitors the dosage of methotrexate, a commonly prescribed anti-cancer drug. The past few years' research projects have centered on developing a chemotherapy regime for leukemia patients who have relapsed - a procedure that can sometimes spare them the harrowing ordeal of a bone-marrow transplant.

Steadier job
For Thomas, the spiritual seeds of this immense project were planted almost half a century ago on the eve of World War II when he was a discouraged, $2-a-night saloon comic in Detroit. His wife, Rose Marie, was struggling to raise their young family on a very tight budget; she finally told her husband it was time to get a steadier job.

"An Irishman in his cups came to me in the club and said, ‘Sit down. I got to tell you about St. Jude'," Thomas recalls. After explaining that his own prayers to the patron saint of the hopeless had cured his wife's cancer, the man left Thomas with a pamphlet. The same day, Thomas went to church by himself to pray for guidance. "I took out the pamphlet and said, 'Help me find my way in life'."

Even though he has received more awards than many heads of state, Thomas says getting a gold medal at the White House was the most thrilling, and terrifying, of all.

Acting on impulse, he promised to erect a shrine to St. Jude if he got a shot at show business success. The saint came through on his end of the bargain first.

The big break came the night Thomas walked into Madison Square Garden's spotlight, an unknown comedian whose legs wobbled with stage fright.

"I was introduced as Danny Kaye in front of 22,000 people," Thomas remembers of the performance that catapulted him into the Big Time in less than an hour. "I wet my pants. I was so nervous my tuxedo actually rippled in the spotlight."

"But somehow, I hit the long ball," he adds, shaking his head in disbelief. "I killed them. I don't know why."

Not long after, he founded the American Lebanese Syrian Associated Charities, now the research center's fund-raising branch.

Thomas' star not only flickered, it soon glowed as one of the brightest in the entertainment galaxy. He became a fixture on television and in clubs around the world.

With the passion of a TV evangelist - an occupation he confesses he would've been good at - Thomas has since traveled worldwide to shepherd support for his shrine. Over the years, he has appeared at hundreds of fund-raisers and corporate shindigs, and enlisted the support of high-rolling buddies like George Burns, Lucille Ball and Frank Sinatra, for whom St. Jude's sixth floor is named.

He also has sponsored every kind of "thon" imaginable - walk-athons, bike-athons, haircut-athons, dance-athons, math-athons. Of the later, Thomas observes, "We help kids who are dying and help kids with their math at the same time."

Now, he devotes more time to the hospital than most people do to full-time jobs.

"St. Jude is my baby," he says. "Every time I see a kid hurting, it reaffirms my vow and my goal. I built the place. The workmen went too slow for me. I moved wheelbarrows!"

• • •

Born Amos Jacobs on Jan. 6, 1912, in Deerfield, Mich., Danny Thomas is the fifth son in a family of eight boys and one girl. His Lebanese parents reared them in the ghettos of Toledo, Ohio.

Thomas says he inherited his faith from his mother, a simple woman who came to this country when she was 10: "She always said, ‘No matter how little you have, God 'will provide.'

"We'd say, ‘So where are the hot dogs? Other people have them.' She'd say, 'Maybe they've done something we haven't done.'

"Every day, she begged pennies for poor people. Every day. She had made a vow. One of her children had been bitten by a rat in his crib and he turned black and blue. She made a promise to God that if he spared her child, she'd do something in return. So every day, she'd walk the streets of Toledo wearing her babushka, and say with a heavy accent, 'Please, a penny for the poor.'"

As he speaks, the man best known for his portrayal of the miseries of the world's little people is both sentimentalist and preacher, poet and wit. One minute, his sermon is philosophical: "My purpose in life is to propagate the philosophy of man's faith in man, based on my own belief that unless man re-establishes his faith in his fellow beings, he can never establish a faith in God."

The next, the message is comic: "President Reagan has admitted being embarrassed by having 'Hail to the Chief' played every time he enters a room. But he said it was worse for me because when I walk in, they play Handel's 'Messiah.'"



In his trophy room: "You do the best you can and leave the rest in the hands of the divine director."

Seated in his study with a wide-angle view of Hollywood, Los Angeles, and the Pacific Ocean, Thomas conveys a high degree of street-wise smarts and pampered poise. He's a high school dropout with a pencil-sharp mind. He's quick-witted, articulate, down to earth, and exceedingly sentimental.

His home - a gilded Mediterranean castle brimming with art objects from the world over- is a monument to temporal success. Yet, he likes nothing better than a casual evening with Rose Marie, his wife of 56 years, his three grown children, and his grandchildren.

"With them, it's blue jeans and beer," he says. "The other night Phil [son-in-law Phil Donahue] and Marlo [daughter] and I drank a few beers and then stayed up until three singing Irish folk songs."

Thomas usually visits the Memphis medical center several times a year to catch up on scientific advances and to talk with researchers, patients and their parents. It's all part of the promise he made to St. Jude.

"I promised him a shrine, not a side altar," Thomas says, pausing only long enough to light his cigar before launching into another sermon. "The point is to be the best at whatever you are. You can be part of the world. Buy a brick - even if it's $5 or $10 - so you can drive past and say, ‘I have a piece of that building, no matter how small. I am involved.'"

When he first made his commitment to St. Jude, Thomas had thought of opening an emergency center for low-income children. But after seeking guidance from his close friend, Cardinal Samuel Stritch of Chicago, he instead chose to build a research hospital to focus on children' s cancer. Thomas thinks the cardinal leaned toward Memphis because his career as a priest began there.

Looking back on St. Jude's dedication ceremony 25 years ago, Thomas says he never dreamed how successful the shrine would become. And he could never imagine the lessons he'd learn from the children at St. Jude.

"Courage. That's what you learn from children with cancer," Thomas states flatly. "You learn strength and stamina when you are with kids who are battling for life. You learn peace.

"Some of the older kids know they're going to die. They console their parents. There are no hysterics, no dramatics. I call them 'the Holy Innocent.'"

As an entertainer for U.S. troops in Europe during World War II, Thomas saw the ravages of war first hand. Some of his most haunting memories are of children in pain. "We'd see the same kids we'd seen two days earlier. Now, the child's legs and arms would be gone. I entertained one who had a huge hole in his head. "

Most people don't immediately lump entertainers with doctors and nurses in the so-called "helping professions." But Thomas says the work of show business professionals is very much like that done by the ministry.

"After the Red Cross, then comes the entertainer, the clown - the second line of defense," he continues. "Entertainers are there to help people forget their troubles. It's a calling like the ministry. The audience needs you. That's why I've always felt show business was something I had to do since I was II years old and first sold soda pop in a burlesque theater.

"When I am with patients at St. Jude, I hold their hands. We talk. Sometimes I tell them they are doing well. And, no, I'm not immune to suffering. I've done my crying in the halls.

"But what you have to do is give them hope. You give them something they can cling to. You just don't preach despair. Many patients don't know how sick they are. And that's good."

Asked if he'd want to be told if he had terminal cancer, Thomas's response is swift and sure.

"Lie to me!" he booms. "I don't want to know if I'm going to die. It's like my picture of heaven. I see it in beautiful colors and everything. It's not just some theory. I prefer to believe it really is beautiful. I prefer hope to despair."

Thomas says he has no plans to retire from show business or philanthropy. He's confident that when he dies, money will continue to come in to St. Jude.

Last year, his family stood by as President Reagan presented him with a Congressional Medal of Honor in recognition of his humanitarian efforts and outstanding work as an American.

Even though he has received more awards than many heads of state - including membership on the National Advisory Cancer Council of the National Institutes of Health and titles like "Man of the Year" and "Personality of the Century" - Thomas says getting a gold medal at the White House was the most thrilling, and terrifying, of all.

"When they put that thing around my neck, I felt like a drowning man," he says. "I was overwhelmed. I thought, ‘Holy Toledo! Here I am, Mary Jacobs' kid!'"

With eyes glistening, Thomas gazes out the window as if to adjust his mind to the scope of that state occasion. No one, he says, can afford to take bows or to become overly impressed with themselves: "You do the best you can and leave the rest in the hands of the divine director. You can't stop to analyze life. You've got to leave it alone, let it happen."

The sermon is almost over. The conductor signals the finale with a chomp on his cigar. The loquacious preacher becomes the veteran comic: "What's important is faith in your fellow man before faith in God. You can't see Him, except when the smog lifts. Then you can see God - and Catalina."

On that note, a foxy grin flashes over the familiar, fatherly face. As he excuses himself for a late-afternoon appointment downtown, he's as vibrant as a man half his age.

Once out of the study, his presence lingers. His face beams from the dozens of photographs and awards that line the walls of the study.

Yet, one item on the cluttered desk seems to portray its owner more than the others. It's as much a tribute to Thomas' old friend, Harry Truman, as it is a personal statement about the man who carved a great, big dream from a small, simple promise.

It reads: The Buck Stops Here.

♦ ♦ ♦ ♦ ♦

This article was originally published in Coping® with Cancer magazine, September/October 1987.

Remember To Rotate & Balance

by Fran Di Giacomo

“The L.A. Flash” (a.k.a. our youngest son) left work and skillfully sliced through the infamous Los Angeles traffic. I wasn’t actually in the car, but I know how he drives. When we visit him, I slide down in the back seat so I can’t see his death-defying, hormone-induced, hair-splitting F-16 maneuvers that mothers don’t want to know about. The world is an oyster for a young man situated in the heart of the entertainment industry, and tonight’s pearl was a French model he met recently. He rang her doorbell expecting to see this drop-dead beauty in full blossom.

“Mom, she was a wreck!” he complained over the phone. “She was completely ungroomed and looked really awful, and it‘s all your fault.” (Moms deserve hazardous-duty pay.) “Yeah, she looked terrible, but she was all excited and bouncing around and happy.”

Some people pay more attention to the maintenance on their car than maintaining their life.

“Right,” I chimed in. “Too much chocolate; I get the same euphoria.”

“No, Mom, not chocolate,” he sounded exasperated. “Someone told her about your book, and she said it completely changed her outlook on life – she now realized that she didn’t have to look beautiful all the time and be perfectly groomed every time she left the house.” (Did I write that?)

“I guess that’s what she needed to hear,” I offered. “Everybody seems to find what they need in their life. So what did you say?”

“Well, I really wanted to suggest alternate reading, but I didn‘t want to hurt her feelings.”

“Don’t worry,” I said. “Somehow she’ll find the right balance.” Wow. Who could account for the power of the pen? I was laughing the rest of the day.

Each individual must figure out the best way to apply the lessons in life, but I want to remind you about B-A-L-A-N-C-E. Some people pay more attention to the maintenance on their car than maintaining their life. So take a tip from your owner’s manual – just as you rotate and balance your tires to keep them running smoothly, check for rotation and balance in your life.

♦ ♦ ♦ ♦ ♦

Fran Di Giacomo, “PHD” (Perpetually Hairless Dame), is an artist and author of I’d Rather Do Chemo Than Clean Out the Garage: Choosing Laughter Over Tears. Visit Fran at TheChemoLady.com.

This article was originally published in Coping® with Cancer magazine, July/August 2011.

September is Gynecologic Cancer Awareness Month

 

This year’s Gynecologic Cancer Awareness Month theme — LEARN, LISTEN, ACT — provides steps women can take to prevent gynecologic cancers and receive an early diagnosis.

Learn about the risk factors and symptoms of gynecologic cancers.

Listen to your body.

Act to reduce your risk and take preventive steps; and seek care first from a gynecologic oncologist if you suspect or have been diagnosed with a gynecologic cancer.

Facts by Cancer Type

Cervical Cancer

Learn

• Cervical cancer is entirely preventable.
• Almost all cervical cancer is caused by a persistent infection with the Human Papillomavirus, or HPV.
• Vaccinating women and young girls before they become sexually active can prevent cervical pre-cancer and cancer.
• Regular Pap tests and HPV testing when recommended are equally important in preventing cervical cancer.
• Cervical cancer usually affects women between ages 30 and 55, but younger women also are at risk.

Listen to your body for these symptoms

• Bleeding after intercourse
• Excessive discharge and abnormal bleeding between periods
• NOTE: Most women will have no symptoms, making vaccination, and regular Pap tests plus HPV tests when recommended key to preventing cervical cancer.
• Don’t smoke! Smoking weakens the immune system and a weakened immune system can lead to persistent HPV infection.

Act

• Get vaccinated before you become sexually active.
• Get Pap tests and HPV tests when recommended at the intervals recommended by your healthcare provider.
• If your test results say you have cervical pre-cancer or cancer, seek care from a gynecologic oncologist.

Ovarian Cancer

Learn

• Ovarian cancer is the leading cause of death among the gynecologic cancers and the fifth leading cause of cancer death in women.
• Only 15% of all ovarian cancer cases are detected at the earliest, most curable stage.
• One in 71 women will develop ovarian cancer in her lifetime.
• Learn your individual risk of ovarian cancer.
  • The risk of ovarian cancer increases with age, especially around the time of menopause.
  • A family history of ovarian cancer, fallopian tube cancer, primary peritoneal cancer or premenopausal breast cancer, or a personal history of premenopausal breast cancer place women at heightened risk for ovarian cancer.
  • Infertility and not bearing children are risk factors while pregnancy and the use of birth control pills decrease risk.
• Note: to learn more about your risk of ovarian cancer, read a brochure developed by the Foundation for Women’s Cancer in partnership with Project Hope, Understanding Your Risk of Ovarian Cancer: A Woman’s Guide.

Listen to your body for these symptoms

• Bloating
• Pelvic or abdominal pain
• Difficulty eating or feeling full quickly
• Urinary symptoms, urgency or frequency
• Note: Women who have these symptoms almost daily for more than a few weeks should see their doctor, preferably a gynecologist. Prompt medical evaluation may lead to detection at the earliest possible stage of the disease. Early-stage diagnosis is associated with an improved prognosis.

Act

• Unfortunately, there is no screening test for ovarian cancer.
• Note: Therefore, women need to understand their risk and listen to their bodies for symptoms.
• If you have symptoms of ovarian cancer that are frequent, persistent and new to you, ask your doctor to consider ovarian cancer as a possible cause. Most likely you do not have ovarian cancer. But if ovarian cancer is suspected or diagnosed, seek care first from a gynecologic oncologist.

Uterine Cancer

Learn

• The most common uterine cancer is endometrial cancer, and it is the most common gynecologic cancer.
• Uterine cancer usually occurs around the time of menopause, but younger women also are at risk.
• There is no screening test for endometrial cancer.
• Note: The Pap test only screens for cervical cancer and DOES NOT screen for uterine cancer.
• Risk factors for endometrial cancer include:
  • Taking estrogen alone without progesterone
  • Obesity
  • Diabetes
  • Hypertension
  • Use of tamoxifen
  • Late menopause (after age 52)
  • Never becoming pregnant
  • A family history of endometrial or colon cancer

Listen to your body for these symptoms

• Abnormal vaginal bleeding; younger women should note irregular or heavy vaginal bleeding
• Bleeding after menopause
• If you experience these symptoms, you should have a biopsy of the endometrium to check for endometrial cancer.
• Note: You can reduce your risk of uterine cancer by taking these steps:
  • Exercise regularly
  • Keep your blood pressure and blood sugar under control
  • Manage your weight

Act

• If you have symptoms of endometrial cancer and receive a positive endometrial biopsy, seek care from a gynecologic oncologist.

♦ ♦ ♦ ♦ ♦

A copy of the Learn-Listen-Act toolkit is available on the Foundation for Women's Cancer website.

For more information, visit the Foundation for Women's Cancer.

Coming Full Circle as a Caregiver

by Susan Beausang

I never stop learning from my mother. Through Mom, I am learning what it is like to make your way through cancer treatment at the age of 89. It is nothing like the mom I witnessed facing and beating cancer over 30 years ago. The medical system, cancer treatment, and most importantly, Mom have changed. This experience guiding, caring, and advocating for Mom has me more convinced than ever of the importance of patient advocates and personal caregivers.

Mom has lymphoma, the bad and the good kind, depending on how you look at it. It is fast-growing, but for that reason, more treatable. In some important respects, Mom has journeyed this path before, walking both sides of the care line – giver and receiver. After beating breast cancer, she was there for my father through his struggle with pancreatic cancer. I was there for Dad too, but it was different. My dad was a doctor, still fairly young and confident, and he had my mom to lean on and respond to his needs.

After doctor’s visits and trips to the pharmacy, most caregiving happens at home.

Having survived breast cancer and a radical mastectomy, and having been by my father’s side through his journey with pancreatic cancer, Mom always swore that if she ever again faced cancer, she would not seek treatment. She has changed her mind. She is receiving chemotherapy and has been doing remarkably well with that aspect of her care. And I am here, walking beside her. Patient caregiving and advocacy has gone from being the frosting on the medical care cake to being the flour.

Patient advocacy is just one of many aspects of caregiving. After doctor’s visits and trips to the pharmacy, most caregiving happens at home. From monitoring and administering her medication, to seeing her through sleepless nights, to finding and creating activities or social situations that improve her quality of life, caring for a loved one is a gift. I began this journey more scared than my mom, but with each passing day, my gratitude grows. I’m thankful I have this opportunity to be her foundation, to be her guide, to be her emotional pillar. It is a motherdaughter relationship come full circle.

♦ ♦ ♦ ♦ ♦

Susan Beausang is the president of 4Women.com, which aims to help women and girls cope with the emotional upheaval of medical hair loss and to advocate for greater understanding of the emotional impact of medical hair loss. An alopecian and a previvor, Susan is bald but cancer-free.

This article was originally published in Coping® with Cancer magazine, July/August 2011.

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