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Keep Your Body Moving through Cancer

by Tara A. Albrecht, PhD, ACNP-BC, RN

Regular physical activity is routinely recommended – if not prescribed – as a means to promote a healthy lifestyle as well as to prevent and manage such chronic diseases as diabetes, hypertension, high cholesterol, and cancer. Not only has regular physical activity been found to help prevent and manage disease, it is also known to improve mood, increase energy, and promote more restful sleep. Thus, incorporating regular physical activity into daily life provides many potential benefits.

While cancer is often considered a chronic disease, advancements in screening and treatment have led to improved prognosis. This means that there has been a steady increase in the number of cancer survivors over the past few decades. Unfortunately, this also means that many more people are now living with common disease- and treatment-related side effects, which may persist long after treatment has ended. These side effects include physiological effects, such as pain, peripheral neuropathy, fatigue, and constipation, and psychological effects, such as anxiety and depression.

If you’re having trouble getting started, choosing an activity that you enjoy, perhaps one you can do with family and friends, may be a good motivator.

It was once a common concern among healthcare providers that physical activity would exacerbate or provoke fatigue and pain in people undergoing cancer treatment. However, current research findings suggest that regular physical activity is one method of managing many common side effects reported by cancer survivors, both during and after cancer treatment. While still too early to conclude, recent findings suggest that regular physical activity may also improve long-term prognosis for cancer survivors.

Incorporating regular physical activity into your daily routine can be challenging. This is especially true for cancer survivors, who may be dealing not only with the overwhelming emotions of a new diagnosis but also with such side effects as fatigue, pain, and anxiety. The first step is often the most difficult. Finding a way to make that first step easier is critical, especially when the potential benefits include more energy, better sleep, and less pain.

There is no set prescription for the type of physical activity that cancer survivors should participate in. Walking, biking, swimming, and yoga are a few options. If you’re having trouble getting started, choosing an activity that you enjoy, perhaps one you can do with family and friends, may be a good motivator. Make a standing appointment on your calendar for physical activity, and follow through with it. Find out if an exercise class for cancer survivors is offered at your cancer center, as many hospitals are beginning to provide group physical activity programs for cancer survivors.

While research has shown that regular physical activity is safe and beneficial for most cancer survivors actively receiving treatment as well as those who have completed treatment, some treatment agents can cause long-term changes or damage to organs such as the heart. Therefore, it is very important that you consult with your healthcare provider prior to changing or beginning physical activity. Once cleared to participate, you can begin enjoying the many benefits that regular physical activity offers.

♦ ♦ ♦ ♦ ♦

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Pink

by Vallory Jones

 

Pink is not cotton candy at the circus.
It is not nail polish on my toes.
Or bubblegum.
It is my destiny.
My future.
My journey.

Pink is not a rose on a bush.
It is not a baby piglet.
Or a giggle or grin.
It’s an ominous storm cloud
threatening to rain on me.

Pink is not a ribbon,
an emblem,
or a fad.
It’s a road taken.
A narrow path forced upon me.
An upside down, corkscrew
    rollercoaster.
A life lesson.

Never in my wildest imagination
would I have painted myself pink,
yet I only find myself wishing now
    and again
that I was a pink balloon
floating across the sky,
abandoning my reality
in favor of another color.

♦ ♦ ♦ ♦ ♦

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Fashion Icon Betsey Johnson

on Beating Breast Cancer

by Kaylene Chadwell

For five decades, Betsey Johnson has emblazoned the fashion world with her unique and bold designs. The quirky fashion maven, who performs a cartwheel into the splits at the end of each runway show, began her career as a designer in the 1960s. She founded her own label only a decade later and quickly grew in popularity. Since then, her funky, fierce fashions and accessories have been sold in freestanding Betsey Johnson bou­tiques across the globe and in upscale department stores worldwide. Betsey’s contribution to the fashion industry has garnered various lifetime achievement awards and an induction into the Fashion Walk of Fame. But when she discovered an insidious lump in her breast, Betsey merited a different kind of achievement – cancer survivor.

The news of her breast cancer came just a half hour before she was to host her annual company Christmas party. “I left the doctor’s office, went to the party, and told everyone I was negative,” Betsey reveals to Coping^® magazine. “The doctor was very reassuring that I would be OK, so I didn’t make a big deal about it. I stayed upbeat and positive.”

Initially, Betsey kept her breast cancer diagnosis a secret, fearing it could negatively affect her business. Her daughter, Lulu, was the only person who knew.

“It was an incredible experience to go through with my daughter, the only person I told,” Betsey says. “It brought us closer together.”

After a lumpectomy and 34 days of radiation (which she was able to keep secret by scheduling her treatment sessions early in the mornings), Betsey was cancer-free. Only after she knew she was in the clear did she open up about her private breast cancer journey.

“Keep your sunny side up!”

“I was through it,” she says of her decision to finally go public about her cancer. “I hoped my positive out­look could help someone else going through it.”

Since her cancer “coming out,” Betsey has been heavily involved in advocating breast cancer awareness by telling her story, participating in fundraising events, and designing clothing and accessories to raise money for cancer-related charities. She was named honorary chairperson for the Fashion Targets Breast Cancer Initiative and has been honored by the National Breast Cancer Coalition. She has used her retail stores as a platform for breast cancer awareness and as a way to connect to other breast cancer survivors, whom she affectionately calls her “pink ladies.”

“Pink is my favorite color,” Betsey says, “so naturally my pink clothes speak to breast cancer awareness.”

Even though Betsey has always displayed an optimistic and bubbly personality, beating breast cancer reinforced her “ability to live for today and be positive for the future,” she says. She proudly shares her story to uplift other survivors. “Keep your sunny side up, keep yourself beautiful, and indulge yourself!” she advises.

Although, due to financial strug­gles, Betsey Johnson boutiques have closed their doors, Betsey is staying true to character and optimistically focusing on her more moderately priced department store line. She is also starring in a new Style Network reality show with her daughter called XOX, Betsey Johnson that premieres in May. A new line of signature Betsey Johnson dresses is set to coincide with her reality TV debut.

“I hoped my positive outlook could help someone else going through it.”

“The dress line is my true blue rock ’n’ roll, pretty, punky girl at a much more fantastic price,” she says. “[It will be] available at top department stores across the good ole U.S. of A.”

Cancer-free for more than a decade, Betsey continues to enjoy life. Even at 70 years old, she still performs her iconic cartwheel down the runway at the end of each fashion show.

“I’m going to keep on doing my thing and rockin’ out until I hit the hay,” she avows.

♦ ♦ ♦ ♦ ♦

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Cancer Survivors to Celebrate Life on National Cancer Survivors Day – Sunday, June 2, 2013

From family members to close friends, everyone knows someone whose life has been touched by cancer. On Sunday, June 2, 2013, thousands of people around the world will gather to observe the 26th annual National Cancer Survivors Day^®. Hundreds of communities across the U.S. and abroad will hold celebrations on this day to honor cancer survivors and show that there is life after a cancer diagnosis – and it’s worth celebrating.

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

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

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

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

“When most people hear the word ‘cancer,’ they automatically think the worst,” says Foundation spokesperson, Laura Shipp. “But the truth is that more people are living longer and better quality lives after cancer than ever before. National Cancer Survivors Day is an opportunity for these cancer survivors to come together and celebrate this new reality in cancer survivorship. There is life after cancer. And that’s something to celebrate.”

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

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

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

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

The National Cancer Survivors Day Foundation, along with the NCSD 2013 national sponsors Bristol-Myers Squibb, Coping with Cancer magazine, and Lilly USA, LLC, is encouraging a greater commitment to resolving quality of life issues for cancer survivors. “More resources, research, and increased public awareness are needed to improve the quality of life of cancer survivors,” says Shipp. “Because of advances in modern medicine, cancer survivors are now living much longer after diagnosis. However, long-term survivorship poses its own unique challenges. We need to do a better job of addressing the hardships survivors face beyond treatment.”

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

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

On Facebook: You can live a fulfilling life after a cancer diagnosis. Just ask the millions of people who have survived it. Celebrate life on National Cancer Survivors Day - Sunday, June 2. facebook.com/CancerSurvivorsDay

On Twitter: You can live a fulfilling life after cancer. Just ask the millions of people who've survived it. Celebrate life! #NCSD2013 @SurvivorsDay

About the National Sponsors:
The National Sponsors for National Cancer Survivors Day 2013 are: Bristol-Myers Squibb, bms.com; Coping with Cancer, copingmag.com; and Lilly USA, LLC, lillygrantoffice.com.

♦ ♦ ♦ ♦ ♦

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Preventing Weight Loss during Cancer Treatment

by Colleen Gill, MS, RD, CSO

Three common problems lead to the rapid weight loss associated with many cancers and cancer treatments. Without hunger, it’s easy to forget to eat. When food no longer tastes right, there’s little incentive to finish. Filling up on half the food you could previously eat thwarts anyone’s best intentions.

Regardless of your starting weight, rapid weight loss isn’t healthy. Losing two pounds per week is the result of a shortage of approximately 1,000 calories a day. Such famines change the way food is used. Protein is no longer saved but is burned to provide the calories required to keep your body running. Muscle is broken down to provide needed protein, and you lose strength. To limit the amount of muscle lost, your body cuts back on the proteins it builds, leading to slower healing and poorer immune function. Your oncologist may delay treatment cycles to allow you to recover, interrupting the schedule that research shows is most effective.

Add in only the extras you need to avoid rapid weight loss, and check your weight weekly

Maintaining Weight
The following strategies can help you maintain your weight during treatment:

♦ Schedule small, frequent meals and snacks. Eat or drink something every two and a half to three hours. Think of it as taking a scheduled “dose” of food like you would take a dose of medication. Cell phone alarms serve as great reminders.

♦ Create a list of options and ideas for meals and snacks. Post the list on your refrigerator and continually update it. Editing a list is easier than creating one from scratch, and caregivers can help you shop for and prepare the foods on your list. Your list should include foods that add calories, such as avocado or guacamole, nut butters, olive oil, and dressings, in order to maximize your efforts to maintain your weight. Rotate different foods to keep variety in your diet and avoid burnout. If they agree with you, include stronger flavors to improve taste.

♦ Make it easy for yourself. Ask yourself, “What do I think I can tolerate today?” Keep snacks nearby, and if it’s difficult for you to get up and move around, pack a cooler to put next to your chair. Divert yourself from the work of eating and drinking by pacing bites with TV commercial breaks. After a program ends, get up and walk around the house for five minutes. Exercise improves appetite and aids in digestion.

♦ Try high-calorie drinks as snacks or meal replacements. Regular or chocolate milk, milkshakes, smoothies, eggnog, and commercial drinks, such as Ensure, Boost, or their generic versions, are good choices. Orgain is a popular organic option. Scandishakes, Substimeal, Carnation Instant Breakfast, and Ovaltine offer powders that can be added to milk. Juice-like options with protein, such as Resource Breeze, Ensure Clear, Odwalla, Naked Juice, or Bolthouse Farms juices provide a change of pace.

♦ Make every bite count. Limit lowcalorie foods and drinks, such as diet sodas, tea, coffee, and lean or light versions of foods. Some junk food, like ice cream, tacos, pizza, and hamburgers, can provide needed nutrients. When you can’t eat as much as you used to, choose foods with calories packed into small volumes.

Still Losing Weight?
Continued weight loss means something is still in your way. If you’re too tired to cook, simplify food preparation. Frozen or microwavable meals are quick and easy to cook and create fewer dirty dishes. Enlist friends and family to help with cooking, and give them recipes for dishes you like. Freeze any leftovers to reheat for later. Drink enough fluids to avoid dehydration. If you’re experiencing diarrhea, constipation, nausea, or pain, talk with your doctor about how you can manage these side effects.

Eat enough to avoid losing weight rapidly, but avoid excess. Add in only the extras you need to avoid rapid weight loss, and check your weight weekly. Not all cancers or treatments lead to weight loss, and weight gain is rarely a goal.

♦ ♦ ♦ ♦ ♦

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High Places of the Heart

Finding Perspective through Laughter

by Rev. Susan Sparks

I’ve done many crazy things in my life, but there are two that stick out: performing stand-up and climbing Mount Kilimanjaro. Both were intimidating. And both made me throw up. But there’s a third similarity (and this is the reason I attempted either of these crazy things): both comedy and Kilimanjaro provide high places – places that bring an entirely new sense of perspective.

From the time we are toddlers, we are constantly trying to find high places in order to see. We wail until we’re put in the high chair so we can see everyone at the table. We beg to be put on the shoulders of a tall person so we can see the parade. We scamper up the branches of a towering tree in order to spy on our next-door neighbor.

As adults, we continue the same quest. We peer out of observation towers atop high buildings. We gaze at the world through satellite cameras. And a few crazy people (like myself) climb tall mountains.

You don’t have to climb Kilimanjaro to get a new perspective.
You just need to find a high place of the heart.

But you don’t have to climb Kilimanjaro to get a new perspective. You can just as easily get those same lessons in the daily chaos at ground level. You just need to find a high place of the heart.

The spirit of the human heart is basically a balloon in disguise. Not the lame sculpted-into-a-wiener-dog kind of balloon. I mean the tied-to-a-string, high-soaring, helium kind of balloon.

As a kid, I would get a helium balloon every year at the Festival in the Park held near our house. There was something transporting about holding the string of one of these maverick spheres that refused to be held down by earth or gravity. I would carry it proudly around the park, then carefully back to my room where I would tie it to my white French provincial desk chair.

When I awoke the next day, the balloon would be there bouncing happily back and forth in front of the heat vent. When I’d get home from school, it would still be there, just lower and less active. That night, it could barely hover above the chair, the string itself beginning to weigh the balloon down. And by the second morning, it would be lying on the floor, completely deflated and a fraction of its original size.

Anyone who has ever watched the life cycle of a helium balloon has also seen the full range of the human heart. When lightened, the heart soars upward, flying above all earthly constraints. When saddened and heavy, it deflates, sinks, bounces along the ground, shrinking to a fraction of its original size. Like any balloon, all it needs is a good dose of helium to get it soaring again. And the best helium for the human heart is humor.

When we laugh, we take our eyes off ourselves and our problems, even if only for a brief moment. It’s in that brief moment that we are freed of our daily worries, that we become lightened – in mood and in spirit. And, like a great helium balloon, we rise up and float above the concerns of our world below.

I think when people say “Laugh it up,” they mean it – literally. Laughter empowers the human heart to fly. When we laugh, our hearts find high places. And when we are in high places, whether on the slopes of Kilimanjaro or at home, we see the world differently. Up high, the world looks less scary. Up high, we gain a sense of appreciation. Up high, we can see our way through.

♦ ♦ ♦ ♦ ♦

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New "Re-Mission 2" Games Help Fight Cancer

Casual Games Take on Serious Disease

Re-Mission 2, a collection of free online games launched by HopeLab, harnesses the power and appeal of casual games to help young people with cancer fight their disease. Combining research on the neuroscience of interactive video game play with the fun and accessibility of casual games, Re-Mission 2 is the follow-up to HopeLab’s breakthrough Re-Mission video game, released in 2006.

The new games apply insights from a brain-imaging study published in 2012 by HopeLab and Stanford University researchers showing that Re-Mission, a video game about killing cancer in the body, strongly activates brain circuits involved in positive motivation. This reward-related activation is associated with a shift in attitudes and emotions that helped boost players’ adherence to prescribed chemotherapy and antibiotic treatments in a previous study. As a result, each Re-Mission 2 game is designed to boost positive emotion, increase self-efficacy, and shift attitudes toward chemotherapy. The new games also incorporate direct input from more than 120 teens and young adults with cancer across the U.S.

“A lot of times we don't really want to take our meds, we wonder, ‘What is this doing?  Where is it going?  I'm tired of it.  It's just going to make me throw up,’” said Jose Guevera, an 18-year-old who was treated for cancer at Children’s Hospital Los Angeles and helped design the Re-Mission 2 games. “But when you see on the screen and visualize what's happening inside your body, and what the chemotherapy's doing – you’re not looking at a PowerPoint, you're playing a game and you're being chemo and you're killing your bad cells. I think Re-Mission 2 can really help a lot of us.”

“Research on the original Re-Mission showed that it impacted biology and behavior primarily by energizing positive motivation circuits in the human brain and giving players a sense of power and control over cancer,” said Steve Cole, PhD, Vice President of Research and Development at HopeLab and Professor of Medicine at the University of California, Los Angeles. “That gave us a whole new recipe for engineering the games in Re-Mission 2 – by harnessing the power of positive motivation circuits in the human brain.  And by involving more than 120 young cancer patients in shaping the game scenarios and play experience, we know these games will be super fun to play.”

Each Re-Mission 2 game puts players inside the body to defeat cancer, using weapons like chemotherapy, antibiotics and the body’s immune cells. The action parallels real-world medical treatments used to fight cancer. The games are designed specifically for teens and young adults who are at risk of adverse cancer outcomes due to poor treatment adherence. Research on Re-Mission 2 shows that the new games are as effective as the original Re-Mission game in increasing players’ self-efficacy, boosting positive emotions and shifting attitudes about chemotherapy.

Game Descriptions

The most powerful cancer fighting nano-soldier you can summon.

RE-MISSION 2: NANOBOT’S REVENGE

Your mission: blast all kinds of cancer as a powerful microscopic nanobot. Select from your arsenal of powerful chemo, radiation, and targeted cancer drug attacks to crush the malignant forces of the Nuclear Tyrant. Can you stop all the cancer cells before they escape into the blood stream?

Pro-B ALL mutant fires bio blasts.

RE-MISSION 2: LEUKEMIA

Lured by the sweet taste of healthy stem cells, the Leukemia monster has sent waves of cancer minions to destroy the body’s bone marrow. Save the precious stem cell colonies and cleanse the bone marrow of all leukemia cells with slashing, arcade-style gameplay.

RE-MISSION 2: NANO DROPBOT
Devious cancer cells are lurking, holding healthy cells captive and starving. Seek and destroy cancer in order to rescue healthy cells with your flying DropBot. In this platform puzzle game, players navigate through the body and destroy cancer wherever it hides.

Flying bacteria enemy.

RE-MISSION 2: STEM CELL DEFENDER
Protect white blood cells from a bacteria invasion – you’ve got what it takes to win with your flying nano-fling-bot. Grab and fling bacteria to their doom, unleash powerful antibiotic bombs, and feed a growing colony of healthy stem cells. Once the stem cells grow up, watch them buzz-saw the bacteria.

Chemo-agent, one of the protagonist that the player controls.

RE-MISSION 2: FEEDING FRENZY
Drive your colony of powerful chemo and hungry leukocytes to devour colonies of bacteria and cancer cells. Explore the human body while chomping cancer and bacteria in order to grow stronger, recruit armies of allies, and wipe out cancer and infection.

Leukemutant cancer cell - weak, but there are lots of them!

RE-MISSION 2: SPECIAL OPS
Unlock this action-packed bonus game pack by clearing 5 levels of each of the other Re-Mission 2 games. In this fast-paced arcade-style shooter, you destroy cancerous invaders with a vast array of weapons and power-ups. Special Ops takes the cancer-fighting experience to a new level with great visuals, multiple game styles, and new scenarios that keep the action fresh and exciting. Killing cancer has never been so satisfying! Downloadable for offline play on PCs and Macs.

♦ ♦ ♦ ♦ ♦

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Jumpers, Minimizers, and Fixers

Dealing with Responses I Wish I Hadn’t Heard

by Craig T. Pynn

Scattered among the hundreds of thoughtful and caring responses I received to my prostate cancer diagnosis from my family, friends, and colleagues, there were a few reactions that were difficult to handle. After listening to several people attempt to say the right thing while assiduously avoiding the idea of cancer itself, I sorted their deflective responses to my bad news into one of three categories: jumpers, minimizers, and fixers.

Jumpers
A jumper’s favorite expression is “Don’t worry. Everything will turn out fine.” Variations include, “Every cloud has a silver lining,” and “God gives you only what you can handle. I know you’ll be able to handle this.” While responses like these were meant to be encouraging, in the end they felt like clichés that moved immediately to a happy ending – and jumped right over my need to process, and eventually to accept, the fact that aggressive cancer had become a reality in my life.

From my point of view, it would be a fairly long time before I would be able to say, “Yes, everything did indeed turn out just fine.” By focusing only on the happy ending, the jumpers inadvertently excluded the intermediate struggles that lay between now and then.

By focusing only on the happy ending, the jumpers inadvertently excluded the intermediate struggles that lay between now and then.

Eventually, I decided that the jumpers, by automatically presuming an optimistic outcome, did so because they were simply emotionally unable to entertain bad endings. My standard reply to their presumed sunny outcome became, “Well, I certainly hope so.”

Minimizers
At least the jumpers always assumed a positive end. I was less sure about the minimizers. To be sure, prostate cancer has one of the highest cure rates of any cancer. But as I was looking down the long dark corridor of tests, procedures, and eventually, treatment, all these positive statistics missed the point of my individual experience with aggressive cancer. Rather than encouraging me, the minimizers only tended to deepen my gloom when they made comments like, “Oh, my husband had prostate cancer. They took it out and he’s fine now.” Or, “Prostate cancer has a high cure rate, you know.” Yes, I already knew. Or, “My brother-in-law came through the surgery with flying colors. You’d never know he had cancer.”

Despite their undeniable good intentions, the minimizers’ focus on what had happened to other people conspired to diminish my own experience, possibly even implying that I was just a whiner at heart. In the end, my response to the minimizers was simply to say, “I’m really glad things worked out well for him.”

Fixers
Many married men have probably heard their wives accuse them of trying to “fix” a problem rather than taking the time to listen sympathetically to their feelings. I certainly count myself among that oblivious multitude. But it was only after hearing several men tell me what I should do in order to cure my cancer did I really get what my wife, Susan, had been telling me all these years about prescribing a quick fix without actually listening to her. Fixer statements I heard included “You should have the proton beam treatment,” “Make sure you insist on robotic surgery,” and “I know a great urologist.”

All these solutions were offered before I even had a definitive staging of my cancer, much less even knew what treatment options would be feasible for me. As with the jumpers and minimizers, these statements were made with a sincere intention to be helpful. But every fixer definitely hews to the cliché “fire, ready, aim.” Once again, all I could do was smile appreciatively and say, “That might be an option. We’ll have to see how things go.”

Within a few weeks of my diagnosis, I had pretty much gotten used to the jumpers, minimizers, and fixers. I always wanted to keep in mind that their intentions were harmless. Their messages were just clumsy. I had certainly responded in a similar manner to other people’s problems at one time or another without realizing I might be doing harm.

By focusing on the caring intentions that lay behind their words, I could see they meant only the best for me. As time went on and they recovered from the initial shock, most of the jumpers, minimizers, and fixers eventually became sympathetic – even empathetic – listeners. Had I made the sarcastic responses that so greatly tempted me when I heard their comments, I would have hurt both them and me. In this instance, I was glad that I had chosen to be patient.

♦ ♦ ♦ ♦ ♦

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Get Relief from Gastrointestinal Side Effects

by Marie Morande, RD, CSO, LD

While cancer treatments affect everyone differently, radiation, chemotherapy, and surgery all pose potential side effects. Cancer treatment can affect your body’s ability to absorb food, reduce how much you enjoy food, and cause disruptive gastrointestinal issues. Common gastrointestinal side effects include nausea, vomiting, diarrhea, constipation, and sore mouth or throat.

Nausea and vomiting greatly affect nutritional intake during treatment. Proper antinausea medications are important for managing nausea, so you should consult your doctor for specific recommendations. Dietary changes can also be helpful. Eat small, frequent meals and easily digestible foods. Try crackers, pudding, yogurt, sherbet, popsicles, fruits, rice, baked chicken, oatmeal, and broth-based soups. Avoid cooking foods that produce strong aromas, and avoid eating spicy or greasy foods.

Other possibly effective management strategies include acupressure bands, music therapy, progressive muscle relaxation, and psychosocial support. Ginger, lemon, peppermint, and chamomile may be beneficial in managing nausea and vomiting, but their effectiveness lacks strong research.

Your doctor can help you develop a plan to minimize these effects on your body while maximizing food and fluid intake and increasing your quality of life.

Diarrhea is defined as a change in the consistency or frequency of your stools. Diarrhea may force you to stay home and limit your activity, decreasing your quality of life. The standard treatment for diarrhea is loperamide, but other medication options are available. Your doctor can recommend a medication that he or she thinks will work for you.

Your diet also plays a role in managing diarrhea, and there is some evidence that probiotics may help with radiationinduced diarrhea. If you are experiencing diarrhea, eat a low-fiber diet by avoiding raw vegetables (like broccoli and cauliflower), salad, bran, skins of fruit, and high-fiber cereals, and limit dairy products containing lactose. Eat small, frequent meals to ease digestion, avoid spicy and greasy foods, and consume foods high in salt and potassium to replenish electrolytes.

Constipation is a common side effect of cancer treatment and of antinausea and opioid pain medications. To prevent constipation, it’s important to initiate a daily bowel care program when you begin treatment and if you begin taking opioids. Although the exact regimen will vary by person, experts recommend starting with a stimulant laxative and stool softener, and then adjusting as needed. Your doctor can offer more specific recommendations.

Additionally, a high-fiber diet is recommended for managing constipation. Whole wheat bread, raw fruits and vegetables, cauliflower, carrots, potatoes with skin, bananas, prunes, oranges, and berries are good foods to include in your diet. It’s also important to increase fluid intake; drinking warm beverages may help. Physical activity is also beneficial.

Mucositis is inflammation of the lining of the gastrointestinal tract, usually caused by chemotherapy or radiation therapy. Mucositis can occur anywhere along the gastrointestinal tract, but oral mucositis refers to inflammation and ulceration that occurs in the mouth. Preventing and treating oral mucositis starts with good mouth care: brushing with a soft toothbrush, rinsing your mouth four times daily with a bland mouthwash, and avoiding drinking alcohol and smoking.

No single rinse has been found more effective than another in preventing oral mucositis; however, a baking soda or salt rinse is a common and economical option. Mix one teaspoon of baking soda or salt with one pint of water. Rinse your mouth with one tablespoon for thirty seconds, and then spit out the mixture. Repeat four times per day.

If you’re starting fluorouracil or melphalan infusions, sucking on ice chips for five minutes before, during, and after infusion has been shown effective in reducing oral mucositis. However, avoid ice if you’re taking drugs that increase cold sensitivity, such as capecitabine or oxaliplatin.

If you have mucositis, eat bland, soft, and moist foods. Avoid spicy foods, citrus, and dry or coarse foods that may increase discomfort until your mucositis heals. Talk with your doctor to find out which side effects you should expect from your course of treatment. Your doctor can help you develop a plan to minimize these effects on your body while maximizing food and fluid intake and increasing your quality of life.

♦ ♦ ♦ ♦ ♦

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Above-the-Belt Relationship Changes That Can Come with Prostate Cancer

by Arnold Melman, MD, and Rosemary E. Newnham

Although many men see their temporary or permanent loss of erectile function as the chief change that affects their relationships post-treatment, most researchers would argue that the bigger changes happen – and need to happen – above the belt buckle: in the brain and in the heart.

Changing Views of Yourself
Before you were diagnosed with prostate cancer, there were many roles you played in life: roles related to your work (engineer, teacher, regional manager), your family (son, husband, father, uncle), and maybe your hobbies (baseball fan, photographer, runner). Along with a cancer diagnosis, you are handed a whole new role to play: that of a cancer patient. Especially if you haven’t gone through a major illness before, this is a difficult adjustment. Part of your new role involves unpleasant things like getting poked and prodded and talking about genitals and continence issues, all while wearing a skimpy paper gown in a dreary examining room. Anyone would feel a little vulnerable in that position.

No matter how easily your treatments have proceeded, there will be times when your spouse will need to assume a caretaking role.

There are several other factors that can change the way you view yourself. One is the actual physical problems (urinary incontinence, erectile dysfunction, and possible rectal issues) that make you feel as if you have lost control of your own body. Wetting yourself can be demoralizing and can make you feel infantilized. Erectile dysfunction may mean a loss of spontaneous sex or even the end of sexual intercourse all together. Even if he’s not currently in a relationship, a man may feel like less of a man with the loss of his erections. Masculinity in most cultures is associated very much with virility and with the phallus, which is a powerful symbol of strength and even life itself. Without such tangible evidence as hard, spontaneous erections or the ability to control basic bodily functions, some men may find themselves questioning, what does it mean to be a man? This questioning and vulnerability can change the way you behave in general, and toward your partner in particular.

Changes Caused by Aging
Layered on top of any perceived losses of power and manhood are changes in other areas that might be happening simultaneously for many men with prostate cancer. This disease is often diagnosed around the same time a man starts feeling the effects of aging, such as diminished muscle strength and increased pants size. Other obvious signs of age like hair loss or grey hair and wrinkles can add to the feeling that you are losing your virility.

Given that most men are diagnosed with prostate cancer in their 60s, it is likely to hit a man as he winds down his professional life. Work helps give our lives meaning. Life without work can lower your confidence in yourself and may even bring on an identity crisis: Who am I if I’m not an engineer/ teacher/salesman? What will I do with my life? It may seem as if you are less important to the world, but there is at least one person to whom you are still very important: your spouse.

Caretaking
No matter how easily your treatments have proceeded, there will be times, either during or afterward, when your spouse will need to assume a caretaking role. Caretaking can take many forms: providing emotional support after diagnosis, changing dressings after surgery, buying incontinence pads at the store.

The business of caretaking can upset the balance of a relationship and sometimes make it difficult to continue the usual activities of daily living. The more flexible a couple can be in terms of the roles they take with each other, the better; for example, do both feel comfortable being the giver and the taker? In relationships where the roles are more rigid, it can be more difficult to adjust to stressful shifts in the relationship.

If the caretaking responsibilities begin to seem onerous, then you will need to address the issue. Perhaps there is someone else, a relative or a friend, who you could ask to help. Can you and your spouse arrange it so that you both have time to yourselves – either with friends or on your own – so that you can come back to each other more refreshed? Compromises may need to be made on both sides. Even a small gesture of compromise (maybe you feel too tired to cook but can still peel the carrots) can make the other person feel more appreciated. The person who needs the care might consider little things he could do – fixing a leaky faucet or a cup of tea – to make the caretaker feel cared for, too.

Tension Over Treatment Involvement
Sometimes a man and his spouse can have different priorities for cancer treatment. Research has found that men with prostate cancer might compromise their long-term survival rate to maintain potency, whereas their partners value survival over everything else. Tensions can rise when fears – for loss of life or loss of manhood – collide. Hopefully, you and your spouse communicated about your feelings from the beginning. Spouses not only give emotional support, but they can also provide an extra set of ears and eyes to catch the many important details of medical treatment, such as understanding the medical information, setting up appointments, and following up on test results.

Social Limitations
Sometimes the limitations imposed by the disease, or the treatment, can place undue stress on a relationship. For example, the daily radiation treatments could be especially taxing if the treatment center is a long distance from home. Also, complications such as incontinence can result in curtailing a couple’s social life and travel. Talk about how you and your partner see these limitations; how much do they bother you? Together, brainstorm for ways to resume more of your desired activities while still maintaining your dignity. For example, staying in a shortterm rental house or apartment might give you more privacy on vacation than a hotel – and allow you to do laundry if needed. Changing your regular seats at the theater or ballpark to ones closer to the restroom could allow you to keep your season tickets. Initiating new social activities that are more doable but still fun is a great way to broaden your horizons and deepen your bond with your partner. A social worker, support group friend, or your doctor might be able to offer coping strategies as well.

Anxiety and Depression
Multiple studies have shown that partners become emotionally distressed at higher rates than the ones with cancer, and women are more likely than men, in general, to develop depression and anxiety. If you know your partner is feeling anxious and scared about your condition, you may feel you want to protect her by not sharing your own fears. In reality, there can be great comfort for her in knowing that you are together in your fears or losses. Many couples found that by going through every step of the way together, they came through with a closer, more meaningful relationship and were less “down” than they expected because they weren’t alone.

Look for signs that depression or anxiety might be affecting your spouse’s daily life. Has she withdrawn from her own support network of friends and family? Does she express guilt about your condition or her role in your life? Can you encourage her to continue or resume activities that once gave her joy? If you feel that she is slipping into a real depression and could benefit from counseling, present the idea as a solution to problems she sees in her life. For example, “Your boss seems to be really demanding lately. Maybe a therapist would have some ideas about dealing with him so he doesn’t give you such a headache.” Or, “You’ve been saying you have trouble sleeping for weeks now; maybe your doctor would be able to recommend ways to sleep better.” If she seems reluctant to talk to her doctor or go to a therapist, you might suggest going to couples therapy to get your life together back on track. “We’re going through so much right now; it would do us both good to talk these things through.” A good couples counselor should be able to help address her individual anxiety or depression, and it would take you out of the position of having to “police” her state of mind.

You are also at a higher risk for depression and anxiety during your cancer experience, and your state of mind will definitely affect your spouse. The best thing you can do is be honest with yourself and your spouse about what you are feeling. Be vigilant about not taking out any anger or anxiety on your partner. And don’t be too proud to get help when you need it.

♦ ♦ ♦ ♦ ♦

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What You Need to Know about Making a Claim on Your Health Insurance

When you need to make a claim on your health insurance, it’s important to remember a few things.

Read your policy.
If possible, read your policy before you go for care in the first place. You may need to get permission (a referral) to see a specialist or to get a lab test. You might be restricted to a network of doctors or hospitals. Going out of network might mean you will pay more or that the plan will deny your claim. You might need to submit the claim within a certain number of days following the service in order for it to be paid. Reading your policy is important to understanding what coverage you have and how to use that coverage. You may want to gather a list of questions to ask your insurer or healthcare provider before beginning treatment so you can make sure that your recommended treatments will be covered by your health insurance, and understand which services may not be covered.

Keep good records.
Include copies of all bills and correspondence. Ask for names, addresses, and phone numbers of people you talk to, and note the dates of your conversations. It’s a good idea to keep all original bills for followup purposes, unless your insurance carrier is one of the few that insists you send the originals. In that case, you should keep very good copies for your records. It may be helpful to ask a friend or family member to help keep your records organized and ensure that you have the copies you need, at least while you’re in active treatment.

Because of health reform, most insurance appeals are now standardized under federal law.

Submit your claims on time and in the right order.
Your insurer will pay some bills directly to the appropriate parties if you request that on the claim form. Other bills you must pay yourself and then send copies of the bills to your insurer who then reimburses you directly. Most insurance companies have a time limit for submitting claims. It could be one year from the date of service or by the end of the calendar year. Make sure you know what your policy defines as the time limit. If you have more than one policy, you must send the right bills to the right company in the right order. Remember that your insurance is always primary; your spouse’s is secondary.

If a claim is denied, appeal it.
Always ask if the payment was denied due to a billing or clerical error first. Then send the claim back again and again if necessary. Gather health records and other documents relevant to your claim, and ask your doctor to help make your case. Keep records of all your correspondence: who you talked to, what you talked about, and when you talked to them. And again, be aware of any time deadlines that might apply. Sometimes you can only appeal a denial within a certain number of days following the decision, and deadlines may vary by insurer, by state, and at each level of appeal.

Because of health reform, most insurance appeals are now standardized under federal law. First, you will want to find out if your plan is “grandfathered” and therefore exempt from the new appeals process. Grandfathered plans are plans that were in place when the Affordable Care Act passed (March 23, 2010) and have not made significant changes to benefits or cost sharing since then. You can check with your insurer if you need to know whether your plan is grandfathered. Even if your plan is not subject to these new protections, you should check with your health plan, your state insurance department, or your employer to see if you have similar rights.

If you have these new appeal rights, you must first appeal to your health plan through an internal appeal, which means your plan will have to review its decision. You have the right to learn why your claim was denied, to see your file and materials that supported the denial, and to present evidence as part of your appeal. If your appeal is denied, check with your insurer and your state to determine whether you have the right to additional internal appeals. If not, you will have the right to an external appeal, no matter whether your plan is regulated by state or federal law. An external appeal will be reviewed by an independent review organization; these panels overturn plan denials about half of the time, so it’s worth it to hang in there. Contact your state insurance commissioner for more information about your appeal rights.

You have the right to learn why your claim was denied, to see your file and materials that supported the denial, and to present evidence as part of your appeal.

You also have appeal rights if you have insurance through Medicare. These rights give you five levels of potential appeals. First, you can request a redetermination – a review of your coverage denial – by filing Form CMS-20027 within 120 days. If this is denied, you can ask for a reconsideration, which is an independent review of your claim. This must be requested within 180 days of your redetermination request being denied. Next, if your claim is worth at least $130 and your reconsideration is denied, you may request a hearing by an administrative law judge (ALJ). Fourth, if the ALJ denies your claim, you may appeal within 60 days to the Medicare Appeals Council for review. Finally, if the Appeals Council denies your appeal and your claim is worth more than $1,300, you may appeal to a U.S. District Court. For more information on the Medicare appeals process, see hhs.gov/omha.

If you have Medicaid coverage, you have the right to a fair hearing before a state agency if your request for services is turned down or is not acted upon within a reasonable timeframe. If you belong to a Medicaid-participating managed care plan, you have the right to internally appeal a plan action, such as when your Medicaid plan refuses to pay for a healthcare service or reduces the amount of care they will authorize for you. Additionally, you may file an internal grievance for other types of problems with your Medicaid plan, such as poor quality care. You may also go to federal court by filing suit against the state Medicaid program.

Understand your coverage for experimental therapies and clinical trials.
Sometimes an insurer will deny coverage for care they say is experimental. Insurers generally regard drugs, devices, and courses of treatment still under study as experimental. In other cases, some people may want to enroll in a clinical trial. A cancer clinical trial is a study designed to compare the efficacy of a particular drug with the standard method of treatment. Medicare and some state laws now mandate coverage for routine patient costs associated with cancer clinical trials, and beginning in 2014, all group health plans and individual policies will be required to cover these costs. If your plan denies coverage for care related to a clinical trial, appeal the denial, following the external review procedures outlined in this article.

Know where to turn for more information.
It’s always best to ask your insurance company or your employer for help answering your questions or solving your insurance problems. If this doesn’t work, though, there are other resources.

Most states now have Consumer Assistance Programs, or CAPs, to help you with your problems related to private health insurance. Your state CAP can help you answer your insurance questions, find coverage options, and appeal denied health insurance claims in any kind of private health insurance – whether a policy you purchased on your own or coverage provided through an employer. For a list of state CAPs, see healthcare.gov/law/features/rights/consumer-assistance-program.

Your state insurance commissioner can also be an important resource. They can help you understand state laws and programs and direct you to other sources of assistance. They also can help you figure out whether your plan is one that they regulate.

The United States Department of Labor Employee Benefits Security Administration (EBSA) regulates group health plans sponsored by employers in the private sector. EBSA’s website and publications provide important information about protecting personal rights to healthcare coverage. Visit dol.gov/ebsa/hbec.html or call EBSA’s Employee and Employer Hotline at (866) 444-3272 for free copies of their consumer health publications.

EBSA also makes available a wealth of information on the Affordable Care Act, with particular emphasis on issues that fall within the Department of Labor’s jurisdiction. Many of their materials are more technical than consumer-oriented. You can find these materials at dol.gov/ebsa/consumer_info_health.html.

The Centers for Medicare & Medicaid Services (CMS) of the U.S. Department of Health and Human Services regulates HIPAA and COBRA compliance by group health plans sponsored by state and local governments. In addition, it runs the Medicare program, partners with the states on the Medicaid program, and provides federal oversight and guidance on the insurance reforms and insurance exchanges included in the Affordable Care Act. For more information, contact CMS at (877) 267-2323 or visit cms.gov.

Your State Health Insurance Assistance Program, or SHIP, can also help you with questions about Medicare, Medicare Advantage, and Medigap coverage. You can find contact information for your state’s SHIP program at ShipTalk.org.

For very complicated problems, you may need to consult a lawyer or another expert for professional advice and help. Or you may want to ask a friend to help you make some of these calls, gather information, and keep track of the paperwork. If a professional is needed, however, make sure he or she has expertise in health insurance (not all lawyers or accountants do). Health insurance can be complicated and frustrating, but you are not alone. Be persistent and take advantage of the help that is available for you.

♦ ♦ ♦ ♦ ♦

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Gain Control of Your Anxiety and Depression

by Maria Rueda-Lara, MD

A cancer diagnosis can cause enormous anxiety, sadness, and uncertainty about the future. These feelings are normal up to a certain point; however, when sadness and anxiety take hold and don’t go away, it can lead to depression or an anxiety disorder that requires professional help.

Symptoms of depression include sadness, irritability, inability to enjoy things you once enjoyed, constant worry, dwelling on negative thoughts, and feelings of hopelessness, guilt, or worthlessness. Physical symptoms may include decreased energy, problems sleeping, difficulty concentrating or making decisions, and changes in weight or appetite.

If you’re having some or all of these symptoms, the first step is to talk to your doctor, who can determine if your symptoms are caused by a medical condition. Certain medications, chemotherapies, and medical conditions, such as thyroid disease, can cause depressive symptoms.

If your doctor finds that your symptoms of depression or anxiety aren’t being caused by a medical condition, the next step is to undergo a psychological evaluation. Then, if you’re diagnosed with depression or an anxiety disorder, you can begin to seek treatment. The most common treatments for depression and anxiety disorders are psychotherapy, mind-body techniques, and medication.

Psychotherapy, or “talk therapy,” teaches you how to deal with stress and unhealthy thoughts or behaviors.

Psychotherapy, or “talk therapy,” teaches you how to deal with stress and unhealthy thoughts or behaviors. Some of the different types of therapies available include cognitive behavioral therapy, interpersonal psychotherapy, supportive psychotherapy, and existential psychotherapy.

♦ Cognitive behavioral therapy is based on the idea that your thoughts can affect your feelings and behaviors. It aims to change your thinking to be more adaptive and healthy.
♦ Interpersonal psychotherapy is based on the belief that improving communication patterns and the way you relate to others can effectively treat depression.
♦ Supportive psychotherapy works by strengthening your healthy thoughts and behaviors to help treat internal conflicts that produce anxiety or depressive symptoms.
♦ Existential psychotherapy operates on the belief that internal conflicts are caused by your confrontation and realization of your human condition and its limitations.

Different types of therapy settings are also available to suit your preferences and comfort level. If you’re a person who likes to participate in groups and learn from others, you may want to try group therapy. If you’re a private person who feels more comfortable in a one-on-one setting, individual therapy may better fit your needs.

Mind-body techniques might be helpful if you’re looking for something beyond talk therapy. These techniques teach you how to use the power of your thoughts and emotions to influence your physical and mental health. This may help you relieve distress and other side effects of cancer, such as nausea, problems sleeping, and difficulty relaxing. Some of these techniques include meditation, progressive muscle relaxation, guided imagery, deep breathing, and mindfulness.

♦ Meditation is a practice by which you train your mind to reach a state of relaxation and serenity using deep breathing.
♦ Progressive muscle relaxation teaches you to tense and relax your muscles until your body feels relaxed.
♦ Guided imagery is a technique by which you create a picture in your mind that you associate with feeling well and relaxed and use it to help distract yourself from an unpleasant situation or thought.

Medication may be necessary when talk therapy and mind-body techniques are not enough to treat symptoms of distress, depression, and anxiety. Medications are available to treat insomnia, anxiety, depression, and side effects like fatigue, hot flashes, and pain.

Some people have fears about taking medications to treat mood and anxiety disorders. These fears can be related to the stigma of taking medications for psychological symptoms. Other fears are due to the misconception of becoming addicted to the medications, or the interactions these medications might have with a particular cancer treatment. It’s important to discuss these fears with your physician or counselor, who can address your fears and help ease them.

Medications are intended to help you cope more effectively with what you’re going through. Depression and anxiety can distort how we perceive our problems and can often cloud our judgment, making reality seem harsher than it actually is. When doctors prescribe a medication, their goal is not to alter your personality or make you feel like a “zombie” but rather to help you feel better and get back to feeling like yourself.

♦ ♦ ♦ ♦ ♦

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Genetic Markers Linked To the Development of Lymphedema in Breast Cancer Survivors

A new University of California San Francisco (UCSF) study has found a clear association between certain genes and the development of lymphedema, a painful and chronic condition that often occurs after breast cancer surgery and some other cancer treatments.

The researchers also learned that the risks of developing lymphedema increased significantly for women who had more advanced breast cancer at the time of diagnosis, more lymph nodes removed or a significantly higher body mass index.

The study is the first to evaluate genetic predictors of lymphedema in a large group of women using a type of technology, bioimpedance spectroscopy, to measure increases in fluid in the arm. Bioimpedance spectroscopy is a noninvasive procedure that allows one to measure body composition including an increase in fluid in an arm or a leg.

The study, which involved some 400 women who were tracked over four to five years, will be published online on April 16, 2013 in PLOS ONE.

“The genetic markers found in our study make perfect sense,” said senior author Bradley Aouizerat, PhD, a professor at the UCSF School of Nursing in the department of physiological nursing. “These genes are ‘turned on’ later in the development of our lymph system and blood vessels. They appear to play a role in the ability of our lymphatic system to function on an ongoing basis. It is possible in some individuals who have changes in these genes, that lymphedema could develop after an injury like breast cancer surgery because these genes do not function properly.” 

“Our hope is that once our findings are confirmed in a future study, we will be able to identify women at higher risk for lymphedema prior to breast cancer surgery.”

Lymphedema is a swelling or buildup of fluid in the lymphatic tissues, typically in the arms and fingers but also commonly in the patient’s legs and trunk. It can occur after treatment for any form of cancer that affects lymph node drainage. The exact prevalence is unknown, and the onset of the condition can greatly vary, but as many as 56 percent of women who undergo breast cancer surgery develop lymphedema within two years, according to the National Cancer Institute. More than half a million breast cancer survivors in the United States are estimated to be afflicted with the condition.

Lymphedema can be debilitating, causing scarring, discomfort, disfigurement, difficulty in exercising, walking or other daily activities. Some patients are unable to wear their usual clothing or jewelry because of the increased weight and size of their affected limbs. There’s no cure for the condition – treatment generally centers on controlling pain and reducing swelling.

To date, much of the research on lymphedema focused on identifying which women were at greater risk for the development of the condition, and relied only on patient self-reporting or on data from their medical charts.

In the new study, the authors hypothesized that genomic determinants were behind some of the variations in the occurrence of lymphedema as well as the time of onset of the condition.

The study involved 410 women who were at least six months post-treatment for breast cancer surgery on one breast, and either had lymphedema in their upper extremity or did not have the condition.

The women were assessed at the Clinical Research Center at the UCSF Medical Center at Mt. Zion, one of eight clinical sites in the Bay Area managed by UCSF’s Clinical and Translational Science Institute.

As part of the research, the women underwent spectroscopy measurements of their arms and genomic DNA was extracted. Genotyping was performed blinded to the women’s lymphedema status.

The researchers found that women with lymphedema had:

• More advanced breast cancer at the time of diagnosis;
• A higher number of positive lymph nodes;
• Were more likely to have a significantly higher body mass index.

The authors also found associations between lymphedema and four genes known to play a role in the development of lymphedema.

“These findings suggest that complex interactions may exist between a variety of patient characteristics and genetic markers that place some women at higher risk for the development of lymphedema,’’ said lead author Christine Miaskowski, RN, PhD, a professor at the UCSF School of Nursing in the department of physiological nursing. “Our hope is that once our findings are confirmed in a future study, we will be able to identify women at higher risk for lymphedema prior to breast cancer surgery, and initiate measures to prevent the development of this devastating condition.”

The study was funded by grants from the National Cancer Institute (CA107091 and CA118658) and the American Cancer Society.

♦ ♦ ♦ ♦ ♦

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Cancer Is a Family Affair

Caring for the Siblings of a Child with Cancer

by O.J. Sahler, MD

A diagnosis of childhood cancer is the beginning of major changes in how a family operates. Fear and anxiety about the child’s type of cancer and whether effective treatments are available, trips to the cancer center for treatment, and recurrent periods when the child just doesn’t feel well not only take the parents’ time but can also sap their energy and emotional reserves. In addition, parents have to make decisions about how to maintain health insurance and provide for their family’s living expenses.

Cancer is a family affair, and it’s easy to see how having a seriously ill child affects the adults in the family. But what about the other children? We know from interviews, surveys, and the diaries, stories, and drawings of brothers and sisters of children with cancer that a cancer diagnosis affects them, too. Exactly how cancer affects healthy siblings depends on their personality and style of coping with problems, their relationship to the ill child, and their own emotional and tangible burdens.

Exactly how cancer affects healthy siblings depends on their personality and style of coping with problems, their relationship to the ill child, and their own emotional and tangible burdens.

Personality and Coping Styles
Some people are “externalizers,” meaning they show how they feel and are more likely to express their feelings. Others are “internalizers”and keep their emotions – especially negative ones – to themselves. Rather than exploding when they are hurt or angry, they are more likely to keep their feelings inside and wonder what they did wrong to have these feelings. Children who are internalizers often feel responsible for events or situations that are beyond their control. The idea that they might have caused their sibling’s cancer is one that is likely to arise in young children (4 to 10 years old) or children who did something around the time of diagnosis that they think caused the cancer (for example, roughhousing that led to leg pain, which was ultimately diagnosed as osteosarcoma).

Sometimes children have to be asked directly if they think they had anything to do with causing the cancer because even thinking about such a possibility can be so frightening that they can’t bring it up themselves. Asking a physician or nurse to raise the issue can be helpful. These professionals have an expertise that children recognize, and their reassurance that the child did not cause their brother or sister’s cancer can provide a sense of relief.

Sibling Relationships
Brothers and sisters don’t always get along. When a child doesn’t particularly like the sibling who got cancer, it can make them feel responsible for causing the cancer, especially if the child is still at an age when they believe that if they think something, it will happen. Conversely, when a sibling that a child adores is diagnosed with cancer, it can magnify his or her sense of sadness or anxiety.

The idea that they might have caused their sibling’s cancer is one that is likely to arise in young children or children who did something around the time of diagnosis that they think caused the cancer.

Jealousy is a pervasive negative emotion felt among siblings. Cancer can magnify feelings of jealousy if they already existed, and it can cause jealousy to arise even among siblings who typically get along well. A sibling of a child with cancer may ask, “Just because Johnny’s sick, how come he gets gifts/money/ attention?” In addition, feelings of jealousy can result in the healthy child pretending to be sick in order to get more attention.

Tangible and Emotional Burdens
One example of a tangible burden felt by older siblings of a child with cancer is a teenager having to come home immediately after school to babysit her younger siblings while their parents are at the hospital, rather than being able to participate in a club or hang out with friends. Another example is a teen having to work longer hours at his after-school job because his parents no longer have the extra money to pay for special events he wants to attend. Some siblings make these adjustments willingly. Others feel an acute sense of unfairness, especially when treatment extends over months or years. They may not take their feelings out on the ill child, but they might become distant or withdrawn from parents as a way of expressing their unhappiness.

What You Can Do
Being a parent of a child with cancer is not easy. How do you spread yourself around enough to meet everyone’s needs? How do you keep enough energy in reserve so you can keep going?

Recognizing that these responses are normal for siblings of a child with cancer is half the battle. Yes, there is likely to be jealously. Yes, siblings may feel that you are asking too much of them or that you don’t care about how they feel. Let them know you understand that they’re feeling like their brother or sister with cancer is getting more toys, visitors, or attention. Then reassure them that they are still very important to you.

For older siblings, say something like, “I know that having to take care of the kids after school until Dad gets home from work has been hard. You’ve been doing it for two weeks, and you need a break. What can we do?” As you think through possible solutions, don’t be afraid to ask others for help.

Be sure to spend quality time with all of your children. Let them tell you about their day, their worries, and their joys, and make sure they know how things are going with their brother or sister’s cancer. Let them share in the ups and downs of the cancer journey, but also let them participate in activities apart from the cancer that they will remember fondly later. You can look back and say, “Remember how we almost wore out the Wii controller because we played Mario Party so much?”

Being the brother or sister of a child with cancer is not easy. Siblings can feel tension, anxiety, worry, loneliness, jealously, and abandonment. But they can also feel joy because their sibling is responding well to treatment, secure because the family is looking out for one another, and included because they know they are still important to you.

♦ ♦ ♦ ♦ ♦

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Variations on a Theme by Niebuhr

by Wendy S. Harpham, MD, FACP

God, grant me the …
serenity to accept the things I cannot change,
courage to change the things I can,
and wisdom to know the difference.

patience to wait when healing requires time,
courage to undergo more treatment when needed,
and wisdom to know the difference.

discipline to weigh good options,
courage to reject bad advice,
and wisdom to know the difference.

freedom to nourish realistic hopes,
courage to abandon false hopes,
and wisdom to know the difference.

composure to trust my doctors and nurses
   when they have all they need,
courage to question my doctors and nurses
   when they may need more,
and wisdom to know the difference.

determination to be independent when I can,
courage to ask for help when required,
and wisdom to know the difference.

power to repress upsetting thoughts that only hurt,
courage to work through upsetting thoughts that can help,
and wisdom to know the difference.

stamina to keep pushing when it can improve the outcome,
courage to adjust when now is the best it can be,
and wisdom to know the difference.

energy to be with people who care,
courage to avoid people who pull me down,
and wisdom to know the difference.

persistence to pursue goals that inspire,
courage to let go of dreams that only frustrate,
and wisdom to know the difference.

flexibility to shift direction from a failing approach,
courage to stay the course when it deserves more time,
and wisdom to know the difference.

vision to appreciate what remains,
courage to grieve what’s been lost,
and wisdom to know the difference.

humility to pray as if everything depends on You,
courage to act as if everything depends on me,
and wisdom to do both.

♦ ♦ ♦ ♦ ♦

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New NCCN Guidelines for Patients^® Available for Adolescents and Young Adults with Cancer

The National Comprehensive Cancer Network® (NCCN®) has published NCCN Guidelines for Patients®: Caring for Adolescents and Young Adults (AYA), a patient-friendly translation of the NCCN Clinical Guidelines focused on people diagnosed with cancer between the ages of 15 and 39.

"The unique psychosocial and economic issues of adolescent and young adult patients with cancer have major influences on morbidity and mortality," said Peter F. Coccia, MD, Ittner Professor and Vice-Chairman of the Department of Pediatrics, University of Nebraska Medical Center. Dr. Coccia is a member of the NCCN Board of Directors and Chair of the NCCN Guidelines Panel for Young Adult Oncology. "Experts in AYA oncology from all 21 NCCN Member Institutions developed both the NCCN Guidelines for AYA Oncology for medical professionals and the NCCN AYA Guidelines for Patients. It is their hope and expectation that both sets of guidelines will contribute to optimizing care and improving outcomes in AYA patients with cancer."

"The biology of cancer in adolescents and young adults differs from that in both younger and older cancer patients," said Brandon Hayes-Lattin, MD, Senior Medical Advisor, LIVESTRONG Foundation. Dr. Hayes-Lattin is an Associate Professor, Division of Hematology and Oncology at Oregon Health & Science University (OHSU), Medical Director, AYA Oncology Program at OHSU's Knight Cancer Institute, and a young adult cancer survivor. "This group also faces unique challenges around important issues such as peer support, diagnosis, treatment, and fertility. The NCCN Guidelines for Patients: Caring for Adolescents and Young Adults provides invaluable information that can help these patients and their loved ones make sense of the diagnosis and work with their health care team to make the best cancer care decisions possible."

"This publication provides invaluable information that can help these patients and their loved ones make sense of the diagnosis and work with their health care team to make the best cancer care decisions possible."

NCCN aims to provide people with cancer and the general public with state-of-the-art cancer treatment information in easy-to-understand language. The NCCN Guidelines for Patients®, translations of the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®), are meant to help people with cancer talk with their physicians about the best treatment options for their disease. These NCCN Guidelines for Patients® do not replace the expertise and clinical judgment of the physician.

"We are pleased to announce the public availability of the adolescent and young adult oncology guidelines for patients," said Patricia J. Goldsmith, NCCN's Executive Vice President and Chief Operating Officer. "The objective of NCCN Guidelines for Patients is to empower people with cancer to take a more active role in their treatment. In making such resources available to adolescents, young adults, and their caregivers, NCCN strives to allow these young people to focus on recovery by offering a source of confidence in understanding diagnoses, treatment options, and their subsequent effects. NCCN is appreciative of the support and collaboration from the LIVESTRONG Foundation and Critical Mass, which made this important guideline possible."

NCCN offers 11 other NCCN Guidelines for Patients®, including Breast, Colon, Non-Small Cell Lung, Ovarian, Pancreatic, and Prostate Cancers, Chronic Myelogenous Leukemia, Malignant Pleural Mesothelioma, Melanoma, Multiple Myeloma, and Lung Cancer Screening. Additional NCCN Guidelines for Patients® will be available throughout 2013.

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Updated Tool Now Available to Predict Prostate Cancer Spread

Prostate cancer experts at Johns Hopkins Hospital in Baltimore, MD, have developed an updated version of the Partin Tables, a tool to help men diagnosed with prostate cancer and their doctors to better assess their chance of a surgical cure. The updated tool is published in the British Journal of Urology International. This represents the third update of the data.

“The first thing most men want to know when they learn they have prostate cancer is their prognosis – whether it can be cured,” says Alan W. Partin, MD, PhD, professor and director of Urology at the Johns Hopkins University School of Medicine and creator of the Partin Tables. “The Partin Tables are a statistical model to show the probability that the cancer is confined to the prostate and therefore is likely to be cured with surgery.”

The model is based on an individual’s prostate specific antigen (PSA) level, Gleason score (a number from 2 to 10 that estimates the aggressiveness of tumors removed during a biopsy), and clinical stage (the extent to which a tumor can be felt during a digital exam).

“ We now have a better understanding of intermediate risk and see that more men now fall into that category, instead of the higher risk group.”

John B. Eifler, MD, the lead author of the article who worked with Partin on the revision, says the new Partin Tables show that certain categories of men who were previously not thought to have a good prognosis actually could be cured with surgery. “We now have a better understanding of intermediate risk and see that more men now fall into that category, instead of the higher risk group,” says Eifler.

For example, men with a Gleason score of 8 and above previously were not thought to be good candidates for surgery because of the likelihood that the cancer had spread. The new data show a higher probability of a cure with surgery even if a man’s Gleason score is 8. Scores of 9 and 10 are still considered high risk, indicating that the cancer likely has spread. The researchers also found that having a PSA level of 10 and above was a better cut-off for predicting the spread of disease compared to lower levels.

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Putting Stress in Its Place

by Bonnie A. McGregor, PhD

The diagnosis, treatment, and recovery from cancer is a continuum. When your doctor tells you that you’re cancer-free, there’s a sense of relief. However, even though the treatment is over, the emotional and physical recovery is only just beginning.

You may find yourself facing ongoing physical challenges after cancer. Even simple tasks may seem harder to perform. You may fear that common cold symptoms or minor body aches are signs of the cancer returning. And family and friends who enthusiastically supported you through the difficult treatment phase may become anxious for a return to normalcy.

All of these challenges can result in more stress, and elevated stress can interfere with your recovery. Fortunately, cognitive-behavioral stress management techniques can help you put stress in its place and mitigate its harmful physical effects.

Be Prepared
The most important way to manage stress is to be prepared for physical and emotional challenges during recovery. Talk with your healthcare team about what to expect.

Remember that being cancer-free is not necessarily a return to normal. Full recovery is a gradual process toward a new normal.

Ask for Help
Managing stress requires asking for help. During treatment, friends and family may have offered to help. Now, they may assume that since you are done with treatment, you don’t need help. But you do need help. Indeed, most survivors report significant fatigue and physical symptoms well after their active treatment has ended.

Being cancer-free is not necessarily a return to normal. Full recovery is a gradual process toward a new normal.

It’s OK to ask for help. Just be specific about the help you need. Make a list of available friends and family, and write down what each person does best. If one friend is more punctual, she might be best to ask for a ride to a follow-up appointment. If one is a good cook, perhaps he can provide a dinner. If you have a friend who likes to garden, she could help pull weeds in your flowerbeds.

Focus Your Attention
Another helpful stress-management tool is meditation. Meditation is simply focusing your mind on a given task or experience, like breathing. Simply sit in a comfortable position and focus on your breathing. When you notice your attention has shifted somewhere else, return your focus to your breathing. Practice 5 to 10 minutes at first, and if possible, gradually build up your time to 30 to 60 minutes.

We live in a complicated world where we are expected to multitask. Don’t fall into the multitask trap; instead, focus on the task at hand. For example, if you’re washing dishes, focus on the grime coming off the plates. Feel the soapy water swirling around your hands. When we focus on a single task, our body’s stress system gets a break.

Make Time for Exercise
Many cancer survivors report fatigue, difficulty sleeping, pain, and cognitive challenges persist after treatment. Exercise can help all of these symptoms. The benefits of exercise cannot be overstated; it keeps the body and mind strong. Find an exercise that suits your lifestyle, may it be walking, biking, swimming, or lifting weights. The important thing is to get moving, even if that means just walking around the block.

Energy is like money. Invest it wisely. Investing a little energy in exercise today can pay off with more energy tomorrow. However, if one day you feel strong, be careful not to overdo it. Maintain a healthy balance of exercise and other activities. Bank energy one day to withdraw it on another.

Put Your Emotions to Paper
As a cancer survivor, you have changed whether you wanted to or not. You can help integrate those changes into the new you by writing in a journal. Write your thoughts and feelings, your joys and worries. Be honest and don’t edit yourself. Emotional healing is a critical part of survivorship. Acknowledge your feelings, and don’t be frightened of them. Writing them down can help.

Stress works against the healing process of any disease, including cancer. And while stress cannot be eliminated from your life, it can be managed. Understanding the source of your stress and applying these techniques to limit that stress can greatly reduce the physical and emotional impact of cancer. The result will be a better recovery and a stronger, more confident you.

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Reiki for Cancer Survivors

by Sharon Edelman, RMT

The practice of Reiki (pronounced ray-key) is fundamentally simple in its application. Whether in self-practice or an offering to another, the receiver is fully clothed and made as comfortable as possible in a chair or on a massage table, bed, or sofa – practically anywhere. Lights may be lowered, music may be playing, and the session proceeds with the practitioner placing his or her hands lightly on or slightly above appropriate areas of the receiver’s body for various lengths of time.

There is no manipulation, nothing invasive, and no diagnosis is ever made. There are no known medical contraindications associated with a Reiki treatment. There is no religious affiliation necessary and no dogma or set of beliefs attached to the practice. The receiver is in complete control at all times.

The experience of a Reiki session has the ability to yield unexpectedly powerful results. It makes available to us a time and space where perhaps we will feel rest, release, relaxation, and refuge within ourselves, a time and space to connect with our deepest self, our innate resources, and inner knowing.

The experience of a Reiki session has the ability to yield unexpectedly powerful results.

Now the day comes when we are given a diagnosis of cancer. It is not surprising that, when faced with such a diagnosis, it becomes the central focus of our life – all-encompassing, all-defining, and the center of our personal universe. Naturally and unquestionably, we will focus on its obliteration with a fierce intensity. We will seek out specialists. We will feel defined by that which others see under a microscope. We will find ourselves reflected as scribbles on a medical chart. We will undoubtedly restructure our lives to accommodate whatever treatments are prescribed to us.

And possibly, we will start to feel any control we may have had over our lives inevitably slipping away as we place our lives and our trust so completely in the hands of others, those knowledgeable strangers in scrubs and white jackets.

Then, maybe the simple and gentle practice of Reiki is introduced, offering us a moment to reflect on the multidimensional beings we truly are. An opportunity is presented in the form of a Reiki treatment, which may support our effort to experience the breadth and depth of ourselves as complete individuals.

As a practitioner and mentor with the Reiki volunteer program at the Abramson Cancer Center at the Hospital of the University of Pennsylvania in Philadelphia, many survivors have told me that their Reiki sessions gave them an opportunity to feel a range of emotions – sadness, anger, fear, gratitude, anything, everything, and nothing. In that time that was devoted to their total comfort, it created a space to connect with compassion and empowerment, with their own physical, mental, and emotional states of being, and sometimes with something bigger than themselves.

Amidst the uncertain terrain of cancer treatment, the beeping of infusion machines, the discomfort of radiation or proton beam therapy, the necessary poking and prodding, and the opinions of doctors and surgeons, the simple and gentle practice of Reiki may be a welcome respite and a place to come home to you.

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Medication Duloxetine Helps Reduce Pain From Chemotherapy-Induced Peripheral Neuropathy

Among patients with painful chemotherapy-induced peripheral neuropathy, use of the anti-depressant drug duloxetine for 5 weeks re­sulted in a greater reduction in pain compared with placebo, according to a study in the April 3, 2013, issue of JAMA.

“Approximately 20 percent to 40 percent of patients with cancer who re­ceive neurotoxic chemotherapy (e.g., taxanes, platinums, vinca alkaloids, bortezomib) will develop pain­ful chemotherapy-induced peripheral neuropathy. Painful chemotherapy-induced neuropathy can persist from months to years beyond chemotherapy completion, causing significant challenges for cancer survivors due to its negative in­fluence on function and quality of life. Chemotherapy-induced pe­ripheral neuropathy is difficult to manage, and most randomized controlled trials testing a variety of drugs with diverse mechanisms of action revealed no effective treatment,” according to background information in the article.

There is evidence that serotonin and norepinephrine dual reuptake inhibitors are effective in treat­ing neuropathy-related pain. Several phase 3 stud­ies have shown that duloxetine is an effec­tive treatment for painful diabetic neu­ropathy.

Pain-related quality-of-life im­proved to a greater degree for those treated with duloxetine during the ini­tial treatment than for those treated with placebo.

Ellen M. Lavoie Smith, PhD, of the University of Michigan School of Nursing, Ann Arbor, and colleagues conducted a ran­domized phase 3 trial to examine whether duloxetine would lessen chemotherapy-induced peripheral neuropathic pain. The study included 231 patients who were 25 years or older being treated at community and academic settings between April 2008 and March 2011. Study follow-up was com­pleted July 2012. Stratified by chemotherapeutic drug and comorbid pain risk, pa­tients were randomized to receive either duloxetine followed by placebo or placebo followed by duloxetine. Eligibility required that patients have a pain score of at least 4 on a scale of 0 to 10, representing average chemotherapy-induced pain, after paclitaxel, other taxane, or oxaliplatin treatment.

The initial treatment consisted of taking 1 capsule daily of either 30 mg of duloxetine or placebo for the first week and 2 capsules of either 30 mg of du­loxetine or placebo daily for 4 additional weeks.

The researchers found that at the end of the initial treatment pe­riod, patients in the duloxetine-first group reported a larger decrease in av­erage pain (average change score, 1.06) than those in the placebo-first group (average change score 0.34). The observed average differ­ence in the average pain score between the duloxetine-first and placebo-first groups was 0.73. Of the patients treated with dulox­etine first, 59 percent reported any decrease in pain vs. 38 percent of patients treated with placebo first. Thirty percent of duloxetine-treated patients reported no change in pain and 10 percent reported in­creased pain.

The authors note that the results sug­gested that patients who received plati­nums (oxaliplatin) may have experienced more benefit from duloxetine than those who received taxanes.

Pain-related quality-of-life im­proved to a greater degree for those treated with duloxetine during the ini­tial treatment than for those treated with placebo.

“In conclusion, 5 weeks of duloxetine treatment was associated with a statisti­cally and clinically significant improve­ment in pain compared with placebo. Exploratory analyses raise the possibility that duloxetine may work better for oxaliplatin-induced rather than taxane-induced painful chemotherapy-induced peripheral neuropathy,” the researchers write.

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Breast Cancer & Your Emotional Well-Being

by Linda Sutton, MD

The moment you’re diagnosed with breast cancer, your life is irrevocably changed. Regard­less of your prognosis, you know that you will never again be someone who hasn’t had cancer. Some people find this burden overwhelming, particularly in the early days just after diagnosis. However, others are able to turn the experience around, growing and blos­soming on their journey rather than being weighed down. What makes the difference?

In my years as an oncologist, I have been impressed by the strength cancer survivors find within themselves. It is a strength that evolves after they emerge from the initial shock of the diagnosis to realize that the huge, frightening burden of cancer can be broken down into a series of challenges they can actually work through. It’s empowering to take on one small challenge after another to get over a bigger hurdle, like getting through chemotherapy by breaking it down to each cycle or each treatment.

Acknowledge Your Emotions
Fundamentally, it’s important to ac­knowledge the fear, sadness, and grief a breast cancer diagnosis can cause for both yourself and your loved ones. Intermittent sadness and anxiety is natural and to be expected. If you don’t ac­knowledge these feelings when they arise, your ini­tial normal fear and grief can morph into anxiety and depression that is hard to overcome. Talking about your experience with family or friends, sup­port group members, or professional counselors can corral your fears and help you develop creative solutions to every challenge you face. There is truth in the age-old adage that two (or more) heads are better than one.

Knowing that you are not alone as a woman with breast cancer is vital to your emotional well-being.

Seek Support
Knowing that you are not alone as a woman with breast cancer is vital to your emotional well-being. Even if your circumstances have limited the involvement of family or friends in your life, you can still gain a network of support at your treatment center, in your community, and even around the world through the Internet. There are many resources for cancer survivors, often at no cost. Most treat­ment centers offer support programs that include not only terrific educa­tional and emotional support groups for cancer survivors but also financial counseling and support programs for their families.

Write It Down
For some breast can­cer survivors, keeping a journal of their cancer experience can provide a safe place to deposit their fears, worries, and concerns and acknowledge their suc­cesses in writing. My high school English teacher would say to us, “If you keep a journal, you will never need a psychiatrist.” I’m not sure he was completely right about that, but I do think he was on to something. The cancer survivors I work with who tell me about their jour­nals usually do seem better organized and focused on moving forward.

Get Moving
One aspect of emo­tional health that is often overlooked is the role of physical activity. Getting up and engaging in some exercise – whether it’s stretching, yoga, walking, or training for a triathlon – can increase your sense of well-being by releasing feel-good chemicals in your brain. Engaging in moderate exercise provides additional potential benefits for breast cancer survi­vors, such as decreased risk of recurrence of and death from breast cancer. Before getting started, talk with your doctor about what might be the best exercise program for you. Don’t hesitate to ask for referral or recommendations for fa­cilities in your area that might have programs specifically designed for can­cer survivors.

Give Back
Consider doing some­thing positive with your breast cancer diagnosis. It takes some time to reestab­lish your emotional well-being, but once you have found your path, helping other women with breast cancer allows your emotional wellness to soar. Some breast cancer survivors have gone on to work as volunteers in their treatment centers or local hospitals. Some have developed cancer support programs in their hospi­tals where none existed previously, and others have even gone on to build na­tional support programs. Find what ignites your passion, and go for it.

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Coming to Terms with Your New Normal

by Deborah Seagull, PhD

A man came into my office after a diagnosis of neck can­cer and said to me, “I miss Matt. I miss the old Matt.” He said that cancer had profoundly changed the way he saw himself and the world. He felt that he could not do ordinary things or focus on small talk the way he used to, regular chores and activi­ties had lost their meaning, and he was unsure about what was fulfilling to him these days.

Matt’s feelings are common for cancer survivors. Life changes rapidly after you’re diagnosed. Days that were filled with just regular activi­ties are now quickly packed with surgery, endless doctors’ appointments, chemotherapy, and radiation. It can be shock­ing how different your life is from what it used to be. Life can feel con­sumed with cancer, and traces of your old life may seem far gone.

This is normal. When faced with the enormity of a cancer diagnosis, everything changes. It’s important to acknowledge these changes so that can­cer does not take over your life and your identity.

Be gentle with yourself, regardless of what you are feeling.

Experience the Emotions
One of the most crucial elements for effective coping is to allow yourself room to truly feel any difficult emotions that arise. Try not to force yourself to feel grateful or happy, or anything at all, right off the bat. Instead, allow yourself time and compassion to experience what you are going through. Recognize your need for acknowledgment, healing, and kindness. Be gentle with yourself, regardless of what you are feeling.

Grieve
No matter your stage of can­cer or your prognosis, you may still feel a need to grieve. As Matt said, he missed his old self and his old life. You won’t ever go back to being a person who never had cancer, and that is something to grieve, despite the outcome. Allow your­self time to cry, to journal, and to express your emotions. These difficult feelings will pass, and in time, you will feel ready to accept your “new life.”

Take Care of Yourself
Remember that you have been through a lot. Get enough rest. Do your best to eat well and do things you enjoy. But know that you won’t always be able to care for yourself perfectly, and that’s OK.

It is common to have anxiety about the future. Scans, birthdays, or anniversaries may be particularly nerve wracking. When you’re sick or have an ache, your first thought may be cancer. Although almost every survivor struggles with these fears, it can be helpful to remem­ber that you do have a certain level of control over your health. Think about your eating habits, the treatments you have undergone, and how you are do­ing all you can to help combat feelings of worry.

Your relationship with your doctor is crucial. If you are concerned about anything, call your doctor. Don’t let your fear stop you. During routine vis­its, communicate with your physician and ask the questions that are on your mind. More likely than not, your doctor will give you reassurance.

Reach Out
If you are a social person, it can be so important to talk to others who have cancer. Your family and friends love and support you, but they might not have a deep understanding of what you feel. Their desire for you to be OK may make it hard for them to truly “get it.” Others in a similar situation can provide tremendous relief and support, which will naturally make you feel less alone.

Cancer may make you question all kinds of things. You certainly would not have wished for this diagnosis, but you can learn from it. You might chal­lenge your ideas about how you want to live your life, change jobs, deepen your friendships, or become more grate­ful for the life you do have – perhaps not right away, but eventually. I hope you will find that your old normal and your new normal can come together in a way that brings you acceptance, peace, and joy.

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Put an End to Cancer Pain

by by Kim Thiboldeaux and Mitch Golant, PhD

For many people, the most fright­ening part of any diagnosis is experiencing pain that is not treatable. Many people, however, un­dergo cancer treatment without ever having pain. If you do experience pain, you should talk to your healthcare team and together create a plan to manage your pain.

When pain is a result of tumors press­ing on an organ, it can often be relieved by surgery to “debulk” (i.e., reduce the size or amount of) the tumor or by us­ing radiation or chemotherapy to shrink the mass. Cancer can also cause pain when it spreads into the bones and dam­ages their structure. Frequently, treating the bone with radiation relieves this type of pain. Pain can occur when cancer presses on a nerve, causing a burning, tingling, or shooting pain sensation. Certain pain medications are especially effective for nerve pain. Sometimes a nerve block, which makes the whole nerve numb, can treat such a pain.

Unfortunately, cancer treatment itself can also cause pain and discom­fort. Certain types of chemotherapy can cause neuropathy (numbness or tingling), which usually affects the hands or feet. Radiation or chemotherapy can cause damage to the lining of the esoph­agus or stomach (stomatitis), resulting in pain and discomfort.

The first step to being empowered means knowing how to communicate about pain and how to take control of it effectively before it becomes disabling.

Taking Control
The first step to being empowered means knowing how to communicate about pain and how to take control of it effectively before it becomes disabling. Admitting that you are in pain is not a sign of weakness. Pain is a medical condition that can and should be treated. By talking about pain, you begin the process of control­ling it.

You can describe your pain in many ways. For example, you can use adjec­tives like “tingling,” “pressure,” or “cutting,” or use a number scale. Rat­ing your pain on a scale of zero (no pain) to ten (extreme pain) is a simple and effective way to explain this to your doctor. The rule of thumb is that any pain over a rating of three needs to be treated. Each person is different in how he or she experiences pain, so do not hesitate to talk to your doctor if you are experiencing pain.

Once you and your doctor have iden­tified the reason for your pain, the next step is usually to choose the correct med­ication. There have been many recent improvements in pain management. There might be a period of trial and error while your healthcare team tries to find the right medication and dosage for you. The many medications available range in strength and may be short-acting (lasting just a few hours) or long-acting (lasting 24 hours or more). Pain medi­cations can be given as pills, liquids, suppositories, skin patches, or injections.

There is a common myth about pain management that prevents many people from getting the pain control they need. The myth is that people will become addicted to pain medication. Addiction is very rare for people with cancer. In fact, less than one percent of people with cancer who are treated with pain medication become addicted. On the other hand, poorly managed pain will increase anxiety and distress, which will in turn intensify feelings of pain. That’s why it’s important to find a quali­fied professional who will provide you with a reasonable pain management program to end pain and distress.

For some people with cancer, mind-body practices such as guided imagery, relaxation and breathing exercises, bio­feedback, massage, acupuncture, light exercise, music therapy, and counseling can help as well.

Most people will have complete relief of pain with appropriate manage­ment. You have a right to have your pain managed, but you need to commu­nicate with your healthcare team about your symptoms. You can ask your on­cologist to recommend a pain specialist if your pain is severe and previously tried treatments have not helped.

What about Side Effects from Pain Medications?
Unfortunately, pain medi­cation can cause side effects, including nausea, drowsiness, and constipation. Most people develop tolerance to the drowsiness and nausea caused by opi­oids, meaning that the medication might cause these side effects at first, but they will eventually subside. Nau­sea might be treated with antinausea medication. If you are taking opioids for pain, you should talk to your doctor about starting a bowel regimen; usually, a combination of a stool softener and laxative is best. If such solutions do not work, switching to a different pain medication might be necessary.

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Navigating the Road to Recovery

After Prostate Cancer Treatment

Recovery from prostate cancer treatment is different for everyone. Once you have selected your treatment option, talk with other prostate cancer survivors who can help you understand what you can expect during your recovery process. Remember to include physician specialists, supportive family members, and friends who can provide various levels of support during your treatment and recovery.

Setting Your Expectations
For each treatment, recovery can vary in length. For those on hormone therapy, for example, treatment will extend for months or years, often intermittently. Knowing what to anticipate can help you manage your expectations.

You might feel tired, weak, and uncomfortable. There are medications that can be prescribed and pain management techniques that can be explained to help you get through pain or discomfort. As your needs during recovery change, so might your healthcare team need to be changed.

Staying connected with those who have been there, who are there, and who understand will help you live a full and balanced life.

Once you have an estimated time for your treatment and recovery, alert your employer as to what changes, if any, or time-off arrangements you’ll need to make to ensure you have time to devote to your care.

It may not be an easy road, but you are never alone. As you progress along your journey, the need for multiple interventions may affect your recovery time. You may need to adjust your support team from time to time to ensure your needs are met.

Living with Prostate Cancer
Many men are experiencing a full life and living well with prostate cancer, even though life may be quite different from before. Recognize that your life may have changed because of your prostate cancer.

Many men find it helpful to their recovery and deeply rewarding to give support to others, just as they may have received support. Men have said that other survivors who were total strangers often provided valuable perspectives during their diagnosis, treatment, and recovery. Staying connected with those who have been there, who are there, and who understand will help you live a full and balanced life. You can help others in the same way.

You Can Fight Back
You are now equipped with the information you need to take your first steps toward treatment and recovery. You can live with prostate cancer. Seek out other men who have been treated for this disease. They can provide a wealth of information and support as you travel on your own treatment path.

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The Good News about Feeling Bad

Depression & Cancer

by John L. Shuster Jr., MD

Many people believe that depression is a given with cancer. This is not the case. While a cancer diagnosis is certainly distressing and can be a source of worry, apprehension, discouragement, or sadness, the great majority do not develop clinical depression. Though there may be bad days, the support of family and friends, along with a caring team of clinicians, helps most maintain morale and an optimistic spirit. It is important to watch for the signs of depression and treat depression early if it develops, but it is also important not to spend emotional energy worrying about developing depression as if it were inevitable.

Living with cancer can be disruptive to your lifestyle and quality of life, even when depression is not present. Cancer treatment can make someone who is accustomed to being on top of things feel out of control. This distress is not trivial, but it should not be confused with depression. This level of distress generally responds to support, time, and self-care.

The signs of clinical depression are easy to monitor, as long as you are honest about them and don’t try to minimize or hide symptoms. A person with significant depression has a change in his or her usual thoughts and behavior that indicates either a sad or down mood, or has a loss of interest or pleasure in things usually enjoyed, like being with family, favorite activities, or sexual intimacy.

Feeling down or sad only occasionally is not clinical depression – the changes in mood or behavior that result from depression are present most of the time over a prolonged period of, usually, at least two weeks. Sleep disturbance is common with depression, especially waking up too early in the morning and having trouble getting back to sleep even though you’re still tired. Other symptoms include feelings of guilt or worthlessness, poor concentration, thoughts of hopelessness or suicide, and abnormal body language indicating sadness or disinterest. Loss of energy or appetite are also characteristic of depression; however, cancer and its treatments can sometimes cause these symptoms, too, so these symptoms without sad mood or loss of interest may not indicate depression.

If you do develop depression, first of all, don’t kick yourself. Depression is not a sign of weakness as a person. Second, don’t ignore it, but don’t let yourself wallow in it, either. Recognize that depression can lead to feelings of pessimism and discouragement – treating the depression makes these problems better. Depression tends to run in families, can develop under times of stress, and can be caused by some metabolic changes common in cancer or medication side effects. For example, opioid pain medications can lower levels of testosterone and can cause depressed mood and low energy, especially in men.

The good news is that cancer-related depression can be treated and managed. The first-line treatment for depression – and for other kinds of emotional distress – is good self-care. This may seem obvious, but depression can decrease your motivation to take basic steps to good health and good coping. The bottom line is to remember to take good care of yourself, on purpose. Here are some important tips to help you prevent and manage depression:

• Eat a good and balanced diet, as directed by your healthcare team.
• Participate in moderate exercise, as tolerated and as directed by your healthcare team. This will improve your mood, energy, and sleep.
• Practice good sleep habits, such as observing regular sleep times, avoiding excess caffeine, and keeping a comfortable sleep environment.
• Avoid excess alcohol, and avoid smoking altogether.
• Engage in reliably pleasurable activities on a regular basis (at least weekly). Pick things you know you will enjoy if you can just overcome the resistance to doing them. Pay attention to how much you enjoy these activities.

If a full clinical depression develops, your doctor may recommend treatment with antidepressant medications or therapies aimed at reversing depression. Though there is some variation in response among individuals, antidepressant medications as a group are reliably effective and not habit forming. These medications are not “as needed” drugs, but need to be taken regularly so they lead to a gradual improvement in the symptoms of depression. The right medication depends on several factors, including other medications you may be taking and any past history of good response to these medications (in yourself or close relatives). Specific therapies, like cognitive behavioral therapy, are also effective. Combining these types of therapies with antidepressant medications may be most helpful.

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10 Ways to Cope with Cancer

by Glenn Brooks

In September 2011, I heard those most-unwelcome, life-changing words: “Glenn, you have cancer.” The news is better now. Following ex­cisions, surgeries, radiation, chemotherapy, hydration, some sketchy moments, and incredible medical care, the cancer is no longer active. But I am! I vowed to use my story to encourage others, and with that, I give you my “10 Ways to Cope with Cancer.”

10 What? Cancer? Get Out of Town!
Literally, get out of town. Take a “cancermoon.” Escape for a few days with a loved one, or by yourself, to prepare mentally for what lies ahead.

9 You’ve Got We
You don’t have to go through this journey alone. Peo­ple are willing to help; you just have to ask. You hate asking for help? Now is not the time to be proud; right now, you need to receive. You’ll have your chance to give again soon.

8 Write It Down
The mind has an amazing ability to block out un­pleasant experiences. Keeping a journal can help you look back and remember what your cancer experience was really like, because someday, someone else may need your wisdom.

When times get tough and your very existence is threatened, it’s time to “badger up” and fight like you’ve never fought before.

7 Know Thy Enemy
Cancer is a complex creature. Read, listen, and listen some more. Have questions? Ask them. Are you so overwhelmed that you don’t even know what to ask? Listen and learn. The questions will come to you.

6 Listen to Your Body
Each body is unique. If you pay attention, your body will tell you what you need. Be careful, though; sometimes your body may want to give up. That’s when your brain will need to take charge to help you soldier on through treatment.

5 Exercise
In the beginning, with clearance from you doctor, walk as much as you can. As you continue on, if walking becomes too difficult, make your exercises smaller – arm cir­cles, leg flexes, jaw extensions, tongue drills. And don’t forget the best exer­cise – laughter! Sure, it sounds silly, but the effort will pay off.

4 Pick Up a Hobby
After my diag­nosis, I started playing piano again after a 30-year hiatus. Talk about mak­ing a joyful noise (emphasis on the word noise). I also tried my hand at coloring books, where I learned that I had an amazing knack for staying within the lines. Find something you enjoy to keep your mind alive and alert.

3 Discover Your Inner Badger
No one will tell you that cancer is going to be easy. There will be times when you feel like you just can’t get locked into that radiation mask one more time, or like you can’t muster up the strength to even get hooked up to that chemo IV. But you have to. Like a cute little furry badger, when times get tough and your very existence is threatened, it’s time to “badger up” and fight like you’ve never fought before.

2 Celebrate Progress
Any step forward – any step at all – should be celebrated. Of course, the celebra­tion method may not be a drink of champagne or a big piece of chocolate cake (it probably won’t taste like any­thing but cardboard anyway), but you need to congratulate yourself. That first spoonful of Cream of Wheat, that lap around the mall after treatment, hav­ing a chat with your niece for the first time in months – these are all reasons to celebrate.

1 Expect the Unexpected
Friends, during your cancer journey and beyond, you need to remember one thing – expect the unexpected. It might be a side effect that you’ve never imag­ined (hiccups? really?), or it might be a childhood friend stopping by for a sur­prise visit. Or maybe your dad telling you, “Son, you are my hero.” Someday, something’s going to catch you off guard. Be ready for it.

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Neutropenia and Risk for Infection

What You Should Know

Neutropenia, pronounced nootroh-PEE-nee-uh, is a decrease in the number of white blood cells. These cells are the body’s main defense against infection. Neutropenia is common after receiving chemotherapy and increases your risk for infections.

Why does chemotherapy cause neutropenia?
These cancer-fighting drugs work by killing fast-growing cells in the body – both good and bad. Chemotherapy drugs kill cancer cells as well as healthy white blood cells.

How do I know if I have neutropenia?
Your doctor or nurse will tell you. Because neutropenia is common after receiving chemotherapy, your doctor may draw some blood to look for neutropenia.

There isn’t much you can do to prevent neutropenia, but you can decrease your risk for getting an infection while your white blood cell count is low.

When will I be most likely to have neutropenia?
Neutropenia often occurs between seven and twelve days after you receive chemotherapy. This period can be different depending upon the chemotherapy you get. Your doctor or nurse will let you know exactly when your white blood cell count is likely to be at its lowest. You should carefully watch for signs and symptoms of infection during this time.

How can I prevent neutropenia?
There isn’t much you can do to prevent neutropenia from occurring, but you can decrease your risk for getting an infection while your white blood cell count is low.

How can I prevent an infection?
In addition to receiving treatment from your doctor, the following suggestions can help prevent infections:

• Clean your hands frequently.
• Try to avoid crowded places and contact with people who are sick.
• Do not share food, drink cups, utensils, or other personal items, such as toothbrushes.
• Shower or bathe daily, and use an unscented lotion to prevent your skin from becoming dry and cracked.
• Cook meat and eggs all the way through to kill any germs.
• Carefully wash raw fruits and vegetables.
• Protect your skin from direct contact with pet urine and feces by wearing vinyl or household cleaning gloves when cleaning up after your pet. Wash your hands immediately afterward.
• Use gloves for gardening.
• Clean your teeth and gums with a soft toothbrush, and if your doctor or nurse recommends one, use a mouthwash to prevent mouth sores.
• Try to keep all your household surfaces clean.
• Get the seasonal flu shot as soon as it is available.

What if I have to go to the emergency room?
People with cancer receiving chemotherapy should not sit in a waiting room for a long time. While you are receiving chemotherapy, fever may be a sign of infection. Infections can become serious very quickly. When you check in, tell them right away that you are getting chemotherapy and have a fever. This may be an indication of an infection.

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If Breast Cancer Comes Back

If breast cancer comes back, it may return in the same place. This is called a recurrence, because it is not a new cancer. But a recurrence can also appear in a place not directly related to the first breast cancer. This is called a metastasis, and if cancer is detected in several areas, these are called metastases. If breast cancer comes back, it tends to show up in specific areas of the body: the breast or the area where the breast used to be, the chest wall, the lymph nodes, the bones, the lungs or around the lungs, the liver, or the brain.

Cancers from other parts of the body rarely spread to the breast or the chest wall. If you have a tumor in your lymph nodes, lungs, liver, bones, or brain, it probably is a regrowth or recurrence of the original breast cancer rather than a new and different cancer. In other words, if you had breast cancer and you now have cancer in your bones, liver, or other places, it’s probably not bone or liver cancer, but breast cancer that has spread to the bones or the liver. This is important because breast cancer – even when it has spread – is usually more treatable than a cancer that starts in the bones or liver.

The return of breast cancer can be especially shocking if you have passed the five-years-since-diagnosis mark.

Breast cancer that returns in other parts of the body is invasive cancer. However, cancer that comes back in the breast after surgery or radiation therapy can be either non-invasive or invasive.

If you have developed a cancer in the opposite breast from the one that was originally treated, it’s probably not a recurrence. Most cancers that develop on the other side represent a new cancer rather than a recurrence. Breast cancer can return in three general locations:

• Local, in the breast where it started or in the skin and underlying tissues where the breast used to be
• Regional, in the lymph nodes next to the breast
• Metastatic, in another part of the body, such as the lung, liver, bone, or brain, or in lymph nodes far from the breast

If you have symptoms or tests that suggest the cancer has returned, you probably feel scared about the future. It’s important to get help coping with your fear of recurrence, and not try to brave your way through it alone. You also probably have many questions that are very hard to ask: “How could this happen after I worked so hard to do everything right? I followed every doctor’s recommendation. I ate all the right foods and exercised regularly, even when I wanted to skip it.”

It is hard to make sense of this. This is particularly true if your original cancer was only in the breast; your chest X-ray, blood tests, and bone scan were all normal; and your surgeon assured you, “I got it all.” The return of breast cancer can be especially shocking if you have passed the five-years-sincediagnosis mark.

This is where the limits of tests for cancer become apparent. Tests can detect a growth of one-half to one centimeter or more. But they are not sensitive enough to detect a collection of single cancer cells. Cancer cells that somehow escaped destruction the first time can grow and spread. Eventually, the tumor is big enough to see on an X-ray, feel with your hand, or cause symptoms.

A lot of anger comes with this crisis – anger at the treatments you had and your doctors for their inability to cure you, anger at yourself for not beating the disease, anger at your body for betraying you yet again.

“Maybe I should have had the mastectomy.” “Why did I stop tamoxifen?” “How could I have waited so long when I felt that lump?” All this second-guessing gets you nowhere. But it’s not easy to let it go. You’re trying to make sense of something that makes no sense, pin blame where there is none.

The best thing to do is to remind yourself that recurrence is not a death sentence. Breast cancer that returns to just the breast or nearby lymph nodes may be treated effectively with an excellent outcome. Disease that has spread to other parts of the body may be put in long-term remission.

Also, keep in mind that you won’t have the same experience with recurrent or metastatic breast cancer as women you know who had it years ago. New treatments for recurring cancer have improved survival. One large recent study showed that over the past few decades, women diagnosed with breast cancer have had significantly improved survival. And new treatments that have been widely used only in the past few years might mean even longer survival in the years to come.

The likely course of the disease depends on where and how extensively the breast cancer has returned, the “personality” of the cancer that has come back, how long it’s been since you were last treated for breast cancer, which cancer treatments you’ve already had, any other medical problems you have, and your general health.

All of these facts need to be reviewed carefully. Only then can you and your doctors work out a plan of action.

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The “Write” Way to Heal

by Pamela Post-Ferrante, MED, MFA, CAGS

When I experienced one diagnosis of cancer after another over the span of five years, my life looked like a disaster, especially with a divorce and lost home thrown into the mix. I might have gone under. Instead, writing saved me. It put the pieces of my life back together. It slowed me down and let me feel the joy of creating. Writing had always been at the helm, but this time it was healing me.

In my work, I used writing as a therapeutic tool to help children with special challenges. After cancer, I used the same tools for myself. Using my own words previously spoken to the children I worked with, I wrote from a magazine picture pasted onto a card: “Pretend you are a reporter and this is the picture that goes with your story. Now write the story.” I prompted myself, “Pick up an orange. Hold it and look at it for five minutes. Use your senses. Then write as if you are the orange.”

Writing heals by taking something inside of you - a feeling or idea - and getting it onto paper so you can see it, read it, reread it, share it, and save it.

This experience with writing during cancer redirected my career path from using writing as healing with children to using it with other cancer survivors. Eventually, I created and led writing and healing support groups for cancer survivors. After a decade, I had developed a book of 12 writing sessions and a meditation CD so that others beyond my groups could also experience the healing power of writing.

Writing heals by taking something inside of you – a feeling or idea – and getting it onto paper so you can see it, read it, reread it, share it, and save it, instead of having it drift off into the air. Putting feelings – especially the difficult ones – into words may also cause you to experience them differently. By writing them down, your brain reorganizes the information. You may find that those feelings might not have been as bad as you thought.

In my cancer support groups, I offer pinecones, or seashells, or the sweet smell of fragrant soap to those in attendance. Sometimes I have acorns and furled autumn leaves. I ask everyone to write as if they are that seashell or that acorn, and the feelings expressed through the seashell or acorn might be more about them than if I had just asked, “How are you feeling?”

Then they share. The power of reading their words aloud is healing. The power of learning to listen is healing. Sometimes when you listen to what someone else has written, you realize that their words are also true for you; you just hadn’t known until you heard it.

If you want to try this today, go to an odds-and-ends drawer. (It’s usually the drawer in the kitchen or office that houses string, glue sticks, markers, sticky notes, a forgotten postcard, a screwdriver, a handful of nails, and other miscellaneous objects.) Pull something out. If you don’t have a drawer like this, you can pick up a magazine and find a picture to give a backstory.

Begin your writing session with mindful meditation to help you slow down and become aware of your breathing. Sit for a few minutes and simply follow your breath. Get settled into yourself. Then look at the chosen object or picture carefully. What might it sound like or feel like? If it’s a picture, what do you see? What feeling does it evoke in you? Let’s say you picked a plastic turtle out of the drawer, begin your five-minute writing with “I am a small plastic turtle,” or “I’m Terry, a turtle, and …” – or however else you might want to begin. Then just keep writing. You can even find a writing buddy to share your story with.

As for me, I continue to write through prompts and share my writing for my own health – for fun, for release, for me.

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Cancer Support Community Launches Living Healthy with Cancer

The Cancer Support Community has launched Frankly Speaking About Cancer: Living Healthy with Cancer®, an educational program intended to raise awareness about the unique physical and emotional needs of those living with cancer and to teach survivors how to develop healthy habits to meet these needs.

Taking small steps to continue living a healthy lifestyle can not only lessen the rigors of your cancer treatment but also help you regain a sense of control and confidence in your life as your move through this experience.

The program focuses on four major areas that relate to living with cancer during and beyond treatment: maintaining a healthy diet, medical management, exercise, and emotional wellness.

Here are some essential steps you can take:

• Starting Point
  Empower yourself by learning about ways to improve your overall wellbeing.
• Work Collaboratively
  Communicate with your health care team to ensure your care is best tailored to you.
• Manage your Care
  Take initiative in managing your cancer care and side effects.
• Prevent Infections
  Take preventive steps and develop healthy habits to reduce your risk of infections.
• Eat Right
  Ensure that you are getting the nutrition that you need.
• Stay Active
  Incorporate tailored physical activity as much as you can.
• Think Positively
  Reach out to others and learn about ways to manage your stress.
• Maintain Hope
  You may have cancer, but cancer doesn’t have you.
• CSC Resources for Support
  Cancer Support Community’s resources and programs below are available at no charge

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Is There Sex for Women after Cancer?

by Anne Katz, RN, PhD, and Don S. Dizon, MD, FACP

One of the more common side effects of cancer and its treatments is sexual dysfunction, which includes alterations in body image, changes in normal arousal patterns, and diminished ability to have and enjoy intercourse. All of these issues can take an emotional toll on both the woman with cancer and her partner, and too often, they aren’t addressed.

However, women treated for cancer deserve to have their sex lives back. After all, life after cancer must be worth living, and for those women whose sexual selves are important, this is important. Here are some suggestions for reconnecting to your sexuality.

Don’t suffer in silence.
The first thing you should do if you’re experiencing sexual problems after cancer is talk about them with your partner. Even though this can be a difficult conversation, tell your partner what you’re thinking and feeling. Your partner is likely aware that something is not right but may be afraid to bring it up.

Even though your doctor may not ask about your sex life, don’t be afraid to be the one to bring it up.

Take care of yourself.
Mindfulness-based meditation and physical exercise have both been shown to be helpful for women by reducing stress, encouraging sleep, reducing fatigue, and lifting mild to moderate depression.

Seek out help.
Women should expect their primary care doctors and their oncologists to review issues that may linger after cancer treatment, including sexual problems. But even though your doctor may not ask about your sex life, don’t be afraid to be the one to bring it up. You can ask, “Do you know who I can talk to about sexual matters?” Or bring it up in response to the question, “Is there anything else you’d like to discuss?” Women should feel empowered to seek out advice and solutions, and there is no reason to expect less when it comes to sexual functioning.

Talk to a sexuality counselor or therapist.
This can be very helpful and can provide a safe environment in which you and your partner can communicate. This type of therapist can also suggest different ways of doing things and recommend products that can help.

Take care of your vaginal health.
After cancer, women may experience vaginal dryness and pain with vaginal penetration. However, most women don’t use an effective vaginal moisturizer (for daily comfort) or lubricant (for sexual activity). These can be effective at easing vaginal symptoms. If there is pain with penetration, ask your healthcare provider about using vaginal dilators.

Moisturizers (like vitamin E oil or K-Y® Liquibeads®) can be used to maintain vaginal health. Lubricants should be used liberally prior to penetrative intercourse, as they help to make penetration more comfortable. It is very important not to use anything that is warming, cooling, or intensifying, as these contain irritants that can just make things worse.

Hormonal-based preparations, like estrogen cream or low-dose vaginal estrogen tablets, can also be used to promote vaginal health. However, these should only be prescribed after discussing the risks and benefits with your oncologist and primary care provider.

Rediscover intimacy.
Sexual activity and emotional intimacy are complementary, but they are not the same. They are, however, equally important. Emotional intimacy can help reconnect you to your sexual self. Find ways to help bring you and your partner closer, perhaps by placing an emphasis on holding hands, hugging, and kissing instead of intercourse. These simple activities can yield significant benefits.

Make your sexuality a priority.
Part of rediscovering your sexuality is to make it a priority. Don’t wait for things to get better. Instead, invest the time to work on it. Depending on how long it has been since you were sexually active, it may take months before you feel like there’s been progress. Stick with it, and continue to work with your doctor and sexuality counselor or therapist. Like many things in life, if your sexuality is important, it’s worth fighting for.

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Lymphoseek Approved to Help Locate Lymph Nodes in Patients with Certain Cancers

The U.S. Food and Drug Administration has approved Lymphoseek (technetium Tc 99m tilmanocept) Injection, a radioactive diagnostic imaging agent that helps doctors locate lymph nodes in patients with breast cancer or melanoma who are undergoing surgery to remove tumor-draining lymph nodes.

Lymph nodes filter lymphatic fluid that flows from the body’s tissues. This fluid may contain cancer cells, especially if the fluid drains a part of the body containing a tumor. By surgically removing and examining the lymph nodes that drain a tumor, doctors can sometimes determine if a cancer has spread.

Lymphoseek is an imaging drug that helps locate lymph nodes; it is not a cancer imaging drug. Lymphoseek is the first new drug used for lymph node mapping to be approved in more than 30 years. Other FDA-approved drugs used for lymph node mapping include sulfur colloid (1974) and isosulfan blue (1981).

“Removal and pathological examination of lymph nodes draining a primary tumor is an important diagnostic evaluation for some patients with breast cancer or melanoma,” said Shaw Chen, MD, deputy director of the Office of Drug Evaluation IV in the FDA’s Center for Drug Evaluation and Research. “To use Lymphoseek, doctors inject the drug into the tumor area and later, using a handheld radiation detector, find lymph nodes that have taken up Lymphoseek’s radioactivity.”

Lymphoseek’s safety and effectiveness were established in two clinical trials of 332 patients with melanoma or breast cancer. All patients were injected with Lymphoseek and blue dye, another drug used to help locate lymph nodes.

Surgeons subsequently removed suspected lymph nodes for pathologic examination. Confirmed lymph nodes were examined for their content of blue dye and/or Lymphoseek. Results showed Lymphoseek and blue dye had localized most lymph nodes, although a notable number of nodes were localized only by Lymphoseek.

The most common side effects identified in clinical trials was pain or irritation at the injection site.

Lymphoseek is marketed by Navidea Biopharmaceuticals, Inc. based in Dublin, Ohio.

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How MTV Reality Star Diem Brown Fought Ovarian Cancer and Found Her Passion

by Jessica Webb Errickson

Diem Brown made her MTV debut on the network’s popu­lar reality competition series The Challenge, just weeks after being diagnosed with ovarian cancer. Though she intended to keep her diagnosis a secret, Diem came clean with her Chal­lenge teammate during filming and quickly became labeled as “that cancer girl on MTV.” At first, she hated the label. But she now embraces it, as she’s become “that cancer girl” who’s using her reality star status to help others fac­ing the disease.

A Shocking Diagnosis
At age 22, having just snagged a spot as a contes­tant on MTV’s Real World/Road Rules Challenge: Fresh Meat, Diem began experiencing severe abdominal pain. Being young, athletic, and health-conscious, the word cancer never crossed her mind. Lactose intolerance, maybe, but not cancer.

When she met with her doctor to find out what was causing her symp­toms, Diem was in no way prepared for the words she was about to hear: stage III ovarian cancer. “I remember hearing those words and just feeling completely numb,” Diem confesses in an interview with Coping® magazine. “It didn’t make sense to me. I didn’t understand what cancer was, and I didn’t understand what chemo was. I didn’t know if it was a machine, if it was a pill – I just didn’t understand.”

One thing Diem was clear on, how­ever, was that nothing was going to keep her from her much-dreamed-about television debut. After having surgery to remove her left ovary and completing her first chemotherapy session, Diem hopped on a plane to Australia to begin filming Fresh Meat. “I was jumping off buildings, swim­ming with sharks,” she says of her time on the competition. “I thought I was ticking off my bucket list.”

When Diem returned home, she focused on beating cancer, and after months of chemotherapy, she went into remission. No bucket list needed.

“I didn’t understand what chemo was. I didn’t know if it was a machine, if it was a pill – I just didn’t understand.”

An Unexpected Recurrence
When Diem reached that magic five-year mark of being cancer-free in 2011, she thought she was in the clear. But the following year, after six years of remission, those all too familiar abdominal pains returned. She asked her doctor for an internal ultrasound, which revealed a 10-inch cancerous cyst in her remaining ovary.

“I immediately broke because I knew that this time was final. They remove that last ovary, and I cannot have a biological child,” she says. “I hadn’t frozen eggs or anything, so I went on a hunt for a fertility doctor who would do fertility treatments on a current ovarian cancer patient.”

Taking Control
Diem knew she wanted to have a biological child one day, so preserving her fertility was a high priority this time around. She faced some scrutiny for her decision to delay cancer therapy in order to undergo fertility treatments. But Diem did not make the decision lightly, and she has no regrets about her choice. She was able to bank 10 eggs before having her remaining ovary removed. “Knowing that I had some hope in a freezer,” she says, “I didn’t feel com­pletely at the mercy of cancer. I felt like I had some control in something.”

Finding Her Passion
During her first bout with cancer, Diem sunk into a deep depression. She spent a lot of time online and began taking notice of her friends’ wedding and baby shower registries. That got her think­ing. “When someone’s a patient, there’s no celebration. There’s no registry for patients to help them buy a wig,” she explains, “so I created MedGift.”

At MedGift.com, people can create a registry of items they need during treatment and recovery, such as wigs, help with medical bills, and babysit­ting services. “I created my passion at my absolute most depressed, lowest moment,” Diem says. “It gave me hope while I was going through treatment.”

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Exercise Can Help Cancer Survivors, Though Many Are Reluctant to Do It

Numerous studies have shown the powerful effect that exercise can have on cancer care and recovery. For people who have gone through breast or colon cancer treatment, regular exercise has been found to reduce recurrence of the disease by up to 50 percent. But many cancer survivors are reluctant to exercise, and few discuss it with their oncologists, according to a Mayo Clinic study published in the Journal of Pain and Symptom Management.

“As doctors, we often tell patients that exercise is important, but to this point, nobody had studied what patients know about exercise, how they feel about it, and what tends to get in the way,” says lead author Andrea Cheville, MD, of Mayo Clinic’s department of Physical Medicine and Rehabilitation.

The study is part of a series of investigations looking at exercise habits among cancer survivors. Researchers found that people with cancer who exercised regularly before their diagnosis were more likely to exercise than those who had not. And many considered daily activities, such as gardening, sufficient exercise.

“Most were not aware that inactivity can contribute to weakening of the body and greater vulnerability to problems, including symptoms of cancer."

“There was a real sense of ‘What I do every day, that’s my exercise,’” says Dr. Cheville, noting that most people didn’t realize daily activities tend to require minimal effort. “Most were not aware that inactivity can contribute to weakening of the body and greater vulnerability to problems, including symptoms of cancer.”

In addition, researchers found that people with cancer took exercise advice most seriously when it came directly from their oncologists, but none of those studied had discussed it with them.

“Generally, patients are not being given concrete advice about exercise to help them maintain functionality and to improve their outcomes,” Dr. Cheville says.

Exercise can improve survivors’ mobility, enable them to enjoy activities, and keep them from becoming isolated in their homes. It can contribute to overall feelings of strength and physical safety, ease cancer-related fatigue, and improve sleep. The researchers plan to investigate how to make the message about exercise meaningful to people with cancer to optimize symptom relief and enhance recovery.

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You Have the Power!

by Regina E. Savage

Today is a present, truly a gift. Just think, we have been given a second chance – a chance to change things for the better, to make our lives what we want them to be.

There is so much good that can come from cancer. I know that might sound unbelievable, but it’s true. No, this was not your choice; no, you wouldn’t wish this on anyone; no, you didn’t want this; but look at it in the sense of what you can get from your experience of cancer, what you can do and who you can be. What do you have to lose?

Now is the time to change what you want to change, to realize you have a second chance and are going to live life the way you want to live, with the people, places, and love that you deserve surrounding you. Be selective; get the negative out of your life, leave what you don’t need behind, and move forward. Realize your potential and find your dreams; you have the power!

Now is the time to change what you want to change, to realize you have a second chance and are going to live life the way you want to live.

Now that you’ve had the chance to find yourself, your spirit, and your will to survive, use that for good and make needed changes. Are you in a job you don’t like? Do you live in a place you are uncomfortable with or with someone you don’t really want to live with? Make changes! Life is short, no matter how long you live, so make the next chapter in your life really count.

In the support group I belong to was a woman who decided she did not want cancer to tell her she couldn’t work out any longer, and she set out to prove it. She started a cancer survivor paddling team, and I joined. I had never paddled in my life, especially not in races or competitions, but I loved it! I met new people, other gals who did not want to be defined as helpless, who did not want to spend the rest of their lives sitting in a corner and waiting for the worst, gals who wanted to live.

I was so happy with this paddling team that I started my own cancer survivor team made up of individuals with all types of cancer who wanted to get out on the water and enjoy life. It is a support group in the fresh air, with people who have gone through what I have gone through and understand. This is something I would never have done before.

Is my life perfect now? Of course not, but I make my own decisions and stick with them. I don’t say “yes” anymore just because I feel like it’s the thing to do. Instead, I say what I need to say in order to be genuine and true to myself. I try to remember all the kindness I received when I was sick, and I try to help others.

I also remember that old quote about walking in other people’s shoes. We do not know what others are going through, what their circumstances, difficulties, and obstacles are, unless we are in their shoes. So treat everyone with kindness, understanding, and respect, and it will come back to you tenfold. Now is the time to stand up and make it all count. Be the best you can be, the you with no regrets. You have gotten a second chance – make it count.

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Free Yourself from Fear and Anxiety

by Scott A. Bonnel, LMFT

Imagine you’re having a party. As the host of the party, your job is to ensure that your guests are attended to. You notice that one of your guests is being noisy and obnoxious. The guest is getting so loud that you’re starting to feel uncomfortable. How would you deal with this guest?

When I ask this question in a therapy session, the responses from my clients range from pretending not to notice the guest, to threatening the guest to be quiet, to seeing if someone else will intervene.

Now let’s imagine this rude guest represents your feelings. Consider how you responded to the question. Do you treat your own feelings the same way? Do you try to ignore them, shut them up, or give them to someone else to deal with?

Anxiety can be one of the loudest and most obvious emotions trying to get our attention. We can have racing thoughts, rapid heartbeat, sweaty palms, dizziness, and even feelings of panic. It’s our body’s way of warning us of potential danger. Out of any moment in your life, when else could you feel more in danger than when you’re facing a cancer diagnosis and treatment? That being said, we know it’s not beneficial for our mental or physical health to remain in a state of worry for a prolonged period. It is vital to your recovery for you to learn to cope with your feelings of anxiety.

If you acknowledge your fears, these feelings don’t have to try so hard to make you listen.

Returning to our metaphor, let’s consider an alternative way of dealing with our “noisy” feelings. Can you act like your own best friend and have a comforting conversation with your feelings? Can you go within yourself and say, “I understand you’re worried. I’m here to listen,” and then actually listen to your feelings? Often, people coping with cancer approach the process with an attitude that says, “Keep your head down and just make it through this.” While this can work for a limited time, after a while, the buildup of stress and anxiety will start to make itself known. However, if you acknowledge your fears, these feelings don’t have to try so hard to make you listen.

So how do you listen to your feelings? Start with this: think of your very best friend, the person you turn to for comfort. They care about you and love you. Your best friend listens with attention, compassion, and acceptance. Would your best friend tell you to shut up and not feel scared?

With personal compassion, you can begin to acknowledge your feelings. Instead of denying or disallowing your feelings, you name them: “I am scared,” “I am tired,” “I am afraid,” “I am feeling powerful today!” Allowing yourself to name your feelings validates what you are experiencing inside. Imagine the confusion your brain experiences when it interprets feelings and is told those feelings don’t belong or aren’t real. Acknowledgment is the first step to acceptance. If I recognize I am feeling a certain way, I allow myself to experience the feeling; I name that feeling. I then can start to accept how I am feeling. This can bring profound emotional healing.

Many people are frightened that if they allow themselves to experience their feelings, they will become overwhelmed by them. “If I start crying, I’ll never stop.” This is the big trick: as it turns out, once you begin to have self-compassion and to acknowledge and accept how you are feeling, the emotions no longer seem so overwhelming. It takes some bravery, but it is one of the best things you can do for yourself.

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Stivarga Approved for Advanced Gastrointestinal Stromal Tumors

The U.S. Food and Drug Administration has expanded the approved use of Stivarga (regorafenib) to treat patients with advanced gastrointestinal stromal tumors (GIST) that cannot be surgically removed and no longer respond to other FDA-approved treatments for this disease.

GIST is a tumor in which cancerous cells form in the tissues of the gastrointestinal tract, part of the body’s digestive system. According to the National Cancer Institute, an estimated 3,300 to 6,000 new cases of GIST occur yearly in the United States, most often in older adults.

Stivarga, a multi-kinase inhibitor, blocks several enzymes that promote cancer growth. With this new approval, Stivarga is intended to be used in patients whose GIST cancer cannot be removed by surgery or has spread to other parts of the body (metastatic) and is no longer responding to Gleevec (imatinib) and Sutent (sunitinib), two other FDA-approved drugs to treat GIST.

"Stivarga provides an important new treatment option for patients with GIST in which other approved drugs are no longer effective.”

“Stivarga is the third drug approved by the FDA to treat gastrointestinal stromal tumors,” said Richard Pazdur, MD, director of the Office of Hematology and Oncology Products in the FDA’s Center for Drug Evaluation and Research. “It provides an important new treatment option for patients with GIST in which other approved drugs are no longer effective.”

Stivarga was reviewed under the FDA’s priority review program, which provides an expedited six-month review for drugs that may provide safe and effective therapy when no satisfactory alternative therapy exists, or offer significant improvement compared to marketed products. The drug was also granted orphan product designation because it is intended to treat a rare disease.

The safety and effectiveness of Stivarga for this use were evaluated in a clinical study of 199 patients with GIST that could not be surgically removed and progressed after treatment with Gleevec or Sutent. Patients were randomly assigned to receive either Stivarga or a placebo. All patients also received optimal supportive care, which includes treatments to help manage side effects and symptoms of cancer.

Patients in the study took Stivarga or placebo until either the cancer progressed or the side effects became unacceptable. Results showed patients who took Stivarga had a delay in tumor growth (progression-free survival) that was, on average, 3.9 months later than patients who were given placebo. Patients who received the placebo were given the opportunity to switch to Stivarga when their cancer progressed.

The most common side effects reported in patients treated with Stivarga were weakness and fatigue, hand-foot syndrome (also called palmar-plantar erythrodysesthesia), diarrhea, loss of appetite, high blood pressure, mouth sores, infection, changes in voice volume or quality, pain, weight loss, stomach pain, rash, fever and nausea.

Serious side effects, which occurred in less than one percent of patients, were liver damage, severe bleeding, blistering and peeling of skin, very high blood pressures requiring emergency treatment, heart attacks and perforations (holes) in the intestines.

Stivarga was approved in September 2012 to treat colorectal cancer. It is marketed by Bayer HealthCare Pharmaceuticals, based in Wayne, NJ Gleevec is marketed by East Hanover, NJ-based Novartis, and Sutent is marketed by New York City-based Pfizer.

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Food to Fight Cancer, Food to Fuel Life

by Cassandra Vanderwall, MS, RD, CDE, CPT

Cancer treatment is a battle. The body and mind experience changes that begin with the disease and proceed through treatment and recovery. These changes include several nutrition-related alterations, such as changes in appetite, diminished ability to eat, and high blood sugar with insulin resistance. Most of these metabolic changes are caused by alterations in the body’s immune response that occur because of cancer or its treatment.

While you cannot control cancer, you can control what you eat. You can equip your body for these changes by eating well through cancer.

The right foods can help promote healing, provide stable energy, and supply strength for a better quality of life. The American Institute for Cancer Research has identified several foods with an abundance of phytochemicals that may help to combat cancer. Plant-based (phyto) chemicals are potent antioxidants that prevent and restore damage created by free radicals in the body. Here is a breakdown of antioxidant-rich colorful foods that are touted for their cancer-fighting abilities.

Food can help promote healing, provide stable energy, and supply strength for a better quality of life.

Bright green vegetables, such as cruciferous vegetables (broccoli, kale, brussels sprouts), asparagus, green peas, zucchini, and dark leafy greens are loaded with chlorophyll and indoles. Chlorophyll is known for its cleansing properties, and indoles can protect the body from excessive estrogen, which is a common culprit in reproductive cancers.

Carotenoids, found in yellow and orange foods, are associated with decreased risk of colorectal, mouth, larynx, lung, and esophageal cancers. Lutein and zeaxanthin (carotenoids) give fruit, vegetables, and egg yolks their bright yellow color, but they are also found in several dark green vegetables, too. They are powerful antioxidants that protect the eyes and skin from ultraviolet rays.

Beta-carotene is the precursor of vitamin A. Carrots, sweet potatoes, winter squash, mangos, papayas, and citrus fruits are loaded with beta-carotene; they improve immunity and maintain healthy cell activity. Turmeric and ginger are two yellow-orange spices that are nutrition powerhouses. Turmeric decreases inflammatory pathways to help decrease symptoms in inflammatory bowel disease and reduce your risk of developing colon and bowel cancers. Ginger promotes blood circulation and energy by aiding in digestion. It also may ease nausea, relieve joint pain, and reduce swelling.

The deep red color found in apples, berries, grapes, kidney beans, and tomatoes can be attributed to lycopene and quercetin. Cooked tomatoes have very high levels of lycopene, which is used and stored near the prostate. Therefore, tomatoes and tomato products play a part in preventing and fighting prostate cancer, but they may also protect the body against mouth, breast, pancreatic, and colon cancers. Quercetin, a flavonoid found in red onions, grapes, apples, berries, green vegetables (such as broccoli), prickly pears, and green tea, may decrease inflammation in digestive cancers.

Most blue and purple foods are high in anthocyanins and polyphenols, which may slow and even stop tumor growth. Anthocyanins have been deemed the most powerful of all the antioxidants and are quite abundant in several berries. Polyphenols are found in red grapes, red wine, tea, and coffee. Reservatrol, a popular polyphenol, is the heart-healthy phytochemical in red grapes and wine that is also associated with decreased risk of heart disease.

White and brown foods are often overlooked as super foods but are contenders in phytochemical activity. Garlic, leeks, and onions are high in allyl sulfides, which give them an abundance of antioxidant power – and their unpleasant smell. Foods high in these smelly sulfides have been associated with decreased risks of esophageal, liver, stomach, and colon cancers. There is also research around different varieties of mushrooms. Shiitake, maitake, reishi, and agaricus blazei murill mushrooms are high in lentinan, lectin, and thioproline, which may improve immunity and slow cancer cell growth.

Brown super foods include flax seeds, walnuts, almonds, and legumes. Most of these are high in a specific type of fiber called lignan. Lignans have been linked with suppressing digestive cancers, especially colorectal cancer. Walnuts and almonds are also high in quercetin and kaempferol, which may slow cancer cell growth. All of these brown nuts and seeds are great sources of anti-inflammatory omega-3 fatty acids.

Nutrition is an individualized science; however, the health benefits from the foods described above remain the same. Eating well through cancer begins with identifying the foods that are best for your body. The first step toward eating well for life begins with eating better today.

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Common Diabetes Drug May Help Treat Ovarian Cancer

A new study suggests that the common diabetes medication metformin may be considered for use in the prevention or treatment of ovarian cancer. Published in CANCER, a journal of the American Cancer Society, the study found that women with ovarian cancer who took the drug tended to live longer than those who did not take it.

Previous research has indicated that metformin, which originates from the French lilac plant, may have anticancer properties. To look for an effect of the medication in ovarian cancer, Viji Shridhar, PhD, Sanjeev Kumar, MD, both of the Mayo Clinic in Rochester, MN, and their colleagues analyzed information from 61 women with ovarian cancer who took metformin and 178 women who did not.

The study found that women with ovarian cancer who took the drug tended to live longer than those who did not take it.

Sixty-seven percent of those who took metformin had not died from ovarian cancer within five years, compared with 47 percent of those who did not take the medication. After accounting for factors such as cancer severity and individuals’ body mass index, the investigators found that women taking metformin were more than three times more likely to survive throughout the study than those not taking it.

The findings demonstrate only a correlation between taking metformin and better survival. Additional studies are needed to decipher whether the observations made in this study represent a true beneficial effect of metformin in women with ovarian cancer.

“This study opens the door for using metformin in large-scale randomized trials in ovarian cancer, which can ultimately lead to metformin being one option for treatment of patients with the disease,” says Dr. Shridhar.

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What You Need to Know about Urinary Incontinence after Prostate Cancer Treatment

by Jeffrey Albaugh, PhD, APM, CUCNS

Men treated for prostate cancer know that when the catheter comes out, the leakage may begin. For many men, this leakage may resolve over the next year, but for some men, the issue may last longer. Research reveals approximately 15 percent of men are incontinent up to one year following either radical prostatectomy or laparoscopic prostatectomy. It can take as long as two years for men to regain urinary continence.

During prostatectomy, part of the mechanisms that maintain the urine in the bladder are removed. As a result, the remaining pelvic floor muscles must work harder to maintain the urine in the bladder with activity, coughing, sneezing, and laughing. Men may also have a more urgent need to urinate and not be able to get to the bathroom before leakage occurs. If a man has had radiation therapy, he also may have problems with incontinence related to urinary urgency.

Pelvic floor muscle exercises can be helpful in treating both urge incontinence and stress incontinence.

Types of Incontinence
To help better understand urinary incontinence, this problem can be divided into different categories. Each type of incontinence is different and requires a different approach to treatment. Urinary incontinence can often be a mixture of more than one type of incontinence.

Stress urinary incontinence involves accidental leakage of urine with activity, coughing, laughing, and sneezing. This type of incontinence is the most common in men after prostatectomy because they have lost part of the mechanisms that maintain urine in the bladder.

Urge incontinence is an accidental leak of urine associated with a strong urge to urinate. A man with urge incontinence has a sudden, uncontrolled need to urinate. Urge incontinence and urgency can occur after prostate treatment with either radiation or prostatectomy.

Overflow incontinence occurs when the bladder never empties completely, and once it is filled to capacity, the urine overflows, causing leakage. This can happen when scar tissue from radiation or surgery obstructs the outlet of the bladder. Some men may also complain of leakage of urine during sexual relations or with orgasm after prostatectomy. Although urine is sterile and a small amount of leakage is not problematic, this problem along with erectile dysfunction after prostate cancer treatment can impair a couple’s ability for sex and intimacy.

Treating Incontinence
Incontinence can be treated successfully for the majority of men. Pelvic floor muscle exercises, called Kegel exercises, are a series of exercises designed to strengthen the muscles of the pelvic floor. Dr. Arnold Kegel, a gynecologist, developed these exercises in 1948 as a method of controlling incontinence in women after childbirth. Pelvic floor exercises strengthen the muscles of the pelvic floor to improve both urethral and rectal sphincter function.

The success of pelvic floor exercises depends on proper technique and adhering to a regular exercise program. Pelvic floor muscle exercises can be helpful in treating both urge incontinence and stress incontinence. There are both quick- and slow-twitch fibers in the pelvic floor muscles, so both quick and slow pelvic floor exercises should be practiced. It is important to do the pelvic floor exercises correctly, which may require you to see a specialist nurse or physical therapist who can teach you how to do the exercises appropriately and consistently. Your healthcare provider can also recommend online resources to assist you.

The Agency for Health Care Policy and Research Guideline Urinary Incontinence in Adults: Acute and Chronic Management recommends the primary treatment options for incontinence should be bladder retraining, timed voiding, and pelvic floor exercises. For urge incontinence, there are several prescription anticholinergic medications that may help control the urge to urinate. There currently are no FDA-approved medications for stress urinary incontinence. Surgical interventions for stress urinary incontinence include various sling procedures and artificial sphincters.

Although urinary incontinence is common after prostate cancer treatment, it can often (but not always) be treated successfully. It is essential for men with urinary incontinence to undergo a full evaluation and treatment of urinary incontinence by a urologic healthcare provider.

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Guide to Lodging Accommodations

Links to these organizations and additional resources are available at copingmag.com/housing.

There are several reasons why people with cancer and their families may decide to travel to receive care. Some, especially in rural areas, may have limited access to oncologists and treatment facilities in their area. Others may travel to consult with a specialist, seek a second opinion on a diagnosis or treatment plan, or undergo a therapy that isn’t widely available. For cancer survivors and their families, finding accommodations can be a challenge. Several facilities offer lodging for free or for a nominal fee. Each temporary lodging program will have its own rules and criteria to qualify for services.

Many hospitals and American Cancer Society offices have agreements with nearby hotels and/or campgrounds for reduced rates for people with cancer and their families. Before traveling, contact the hospital’s social worker or the admitting desk for such information. Also, many of the major cancer centers have outpatient lodging run by the institution.

The following is a partial listing of organizations that provide or coordinate temporary accommodations for people with cancer and their families who must travel for medical care.

American Cancer Society Hope Lodges offer people with cancer and their families a free, temporary place to stay when their best hope for effective treatment may be in another city. Guests have access to the American Cancer Society’s 24-hour toll-free call center, website, and comprehensive on-site libraries. Accommodations and eligibility requirements may vary by location. To find a Hope Lodge or to learn more about a specific facility, call the American Cancer Society at (800) 227-2345 or visit cancer.org/hopelodge.

Cancer Financial Assistance Coalition is a group of organizations that help people with cancer manage financial challenges. CFAC offers an online database at cancerfac.org that allows users to search for national or local financial assistance by type of assistance needed, such as housing, or by cancer diagnosis.

Hospital Hosts provides people traveling to receive medical care and their loved ones a nationwide network of economical housing options, ranging from bed and breakfast inns and hotels to special facilities for hospital patients and families and free accomodations in the homes of private volunteers. Visit hospitalhosts.com to search for lodging accommodations near your hospital or to join the network of private host homes.

Joe’s House, joeshouse.org, provides a national, centralized list of accommodations that cater to people with cancer, their families, and caregivers. Lodging options range from hospitality houses, hotels, host family matching programs, apartments, and more. Many lodging facilities listed are free of charge, but they all offer some type of medical discount. Details on each lodging facility are available with information on amenities, rates, reservation methods, and requirements. Those who do not have Internet access may call (877) 563-7468. A representative will provide you with the lodging facilities listed as well as their reservation information.

National Association of Hospital Hospitality Houses, Inc. is an association of nonprofit organizations that provide family-centered lodging and support services to families and their loved ones who are receiving medical treatment far from their home communities. NAHHH members/houses offer inexpensive accommodations during hospitalizations, before and after surgery, and during repeated visits. Call (800) 542-9730 or visit nahhh.org for a directory of NAHHH members and houses.

The National Children’s Cancer Society helps families battling childhood cancer by offering direct financial assistance for non-medical expenses associated with treatment, including lodging and food. Visit thenccs.org or call (314) 241-1600 to request assistance.

Ronald McDonald House Charities provides a “home away from home” for families of seriously ill children receiving treatment at nearby hospitals. In return, families are asked to make a donation ranging on average from $5 to $25 per day, but if that isn’t possible, their stay is free. To find a Ronald McDonald House near you, visit rmhc.org or call (630) 623-7048.

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Treating and Defeating Depression

by Caryl Fulcher, MSN, RN, CNS-BC

We have all heard the word depression, and each of us likely has our own definition of it. For some, it is a momentary feeling of more “down and blue” than usual or a mood caused by something frightening, like cancer. For others, it is a clinical condition that includes unwelcome changes in sleep and appetite, loss of interest in usual activities, poor ability to concentrate, forgetfulness, and sometimes feelings of hopelessness and worthlessness.

Depression makes other cancer side effects worse. Therefore, it is important to get treatment for depression, just as you would any other uncomfortable side effect. Evidence even suggests that depression is associated with poorer survival rates, because depressed individuals may not follow through with treatment recommendations. They have more difficulty making plans, experience more side effects of treatment, and feel more isolated.

Mental health professionals classify depression in a couple of ways. A major depressive disorder describes a condition in which a person experiences symptoms of depressed mood, sleep and appetite disturbance, loss of interest or enjoyment in previously enjoyed activities, poor concentration and memory, hopelessness, and even thoughts of suicide. The other main classification for depression is as an adjustment disorder. Adjustment disorders are milder than major depression and are usually linked to a stressful situation, like cancer.

Social stimulation is important in lifting your mood. Talking with a close friend or relative and openly sharing feelings and fears can be therapeutic.

Major depression is not something that you can overcome by strong will. It is linked to the neurotransmitters serotonin and norepinephrine, and recent research suggests that additional biological activity involving cytokines and inflammatory responses also play a role. Some medications used to treat cancer can even contribute to worsening depression.

Many people think that depression is normal and expected with a cancer diagnosis. However, while reactions of disbelief, sadness, fear, and grief are normal and expected, a sustained depressed mood is not. Short periods of feeling down and discouraged are part of life, but if those periods turn into days or weeks, you should seek treatment for your depression.

Fortunately, depression and its symptoms can be treated successfully. First, see that you are getting enough sleep. Some of the medications taken during cancer treatment may interfere with sleep, as may worry and discomfort. Try nonpharmacological measures such as warm milk or herbal tea, soothing music, and quiet activity with a regular routine before bed. If those don’t work, sleeping medication may be needed.

Planning pleasant activities is another way to fight depression. It’s easy to feel alone and isolated if you don’t feel capable of participating in activities you formerly enjoyed. Waiting to feel better doesn’t work. Instead, plan and follow through with activities that get your mind off your cancer.

Social stimulation is important in lifting your mood. Talking with a close friend or relative and openly sharing feelings and fears can be therapeutic. For some, writing these down in a private journal is helpful. Write without worrying about spelling or grammar. Put down your thoughts and determine later whether you want to share them.

Allowing yourself time for laughter is another good strategy. Find ways to incorporate humor in your life every day, by joking with friends, visiting humor blogs or websites, or watching television comedies.

Accomplishing something specific may also help lift your spirits. After spending so much of your time waiting on doctors, test results, and treatments, it’s gratifying to complete even something simple like baking a cake or knitting a cap. Techniques to promote relaxation, such as meditation, music, prayer, yoga, and massage, may also be soothing and may improve your mood. In addition, exercise shows promising results in reducing depression. Severe depression often requires medications for symptom relief. Antidepressant medications are very effective, and combining medication with psychotherapy is considered the most effective treatment regimen for chronic or severe depression.

Depression can occur at any time during the cancer journey, even after successful treatment has ended. Sometimes family members may be more aware of your depressive symptoms than you are, so listen to their observations. You should treat depression with the same importance you treat other symptoms to achieve the quality of life you deserve.

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New Treatment for Late-stage Breast Cancer

The U.S. Food and Drug Administration has approved Kadcyla (ado-trastuzumab emtansine), a new therapy for patients with HER2-positive, late-stage (metastatic) breast cancer.

HER2 is a protein involved in normal cell growth. It is found in increased amounts on some types of cancer cells (HER2-positive), including some breast cancers. In these HER2-positive breast cancers, the increased amount of the HER2 protein contributes to cancer cell growth and survival.

Kadcyla is intended for patients who were previously treated with trastuzumab, another anti-HER2 therapy, and taxanes, a class of chemotherapy drugs commonly used for the treatment of breast cancer.

“Kadcyla is trastuzumab connected to a drug called DM1 that interferes with cancer cell growth,” said Richard Pazdur, MD, director of the Office of Hematology and Oncology Products in the FDA’s Center for Drug Evaluation and Research. “Kadcyla delivers the drug to the cancer site to shrink the tumor, slow disease progression and prolong survival. It is the fourth approved drug that targets the HER2 protein.”

“Kadcyla delivers the drug to the cancer site to shrink the tumor, slow disease progression and prolong survival. It is the fourth approved drug that targets the HER2 protein."

Referred to as T-DM1 during clinical research, Kadcyla was reviewed under the FDA’s priority review program, which provides for an expedited six-month review of drugs that may provide safe and effective therapy when no satisfactory alternative therapy exists, or offer significant improvement compared to marketed products. Other FDA-approved drugs used to treat HER2-positive breast cancer include trastuzumab (1998), lapatinib (2007) and pertuzumab (2012).

The safety and effectiveness of Kadcyla were evaluated in a clinical study of 991 patients randomly assigned to receive Kadcyla or lapatinib plus capecitabine, another chemotherapy drug. Patients received treatment until either the cancer progressed or the side effects became intolerable. The study was designed to measure progression-free survival, the length of time patients lived without the cancer progressing, and overall survival, the length of time patients lived before death.

Results showed that patients treated with Kadcyla had a median progression-free survival of 9.6 months compared to 6.4 months in patients treated with lapatinib plus capecitabine. The median overall survival was 30.9 months in the Kadcyla group and 25.1 months in the lapatinib plus capecitabine group.

Kadcyla is being approved with a Boxed Warning alerting patients and health care professionals that the drug can cause liver toxicity, heart toxicity and death. The drug can also cause severe life-threatening birth defects, and pregnancy status should be verified prior to starting Kadcyla treatment.

The most common side effects reported in patients treated with Kadcyla were nausea, fatigue, pain in the muscles or joints, low levels of platelets in the blood (thrombocytopenia), increased levels of liver enzymes, headache, and constipation.

Breast cancer is the second leading cause of cancer-related death among women. An estimated 232,340 women will be diagnosed with breast cancer, and 39,620 will die from the disease in 2013, according to the National Cancer Institute. Almost 20 percent of breast cancers have increased amounts of the HER2 protein.

Kadcyla, trastuzumab and pertuzumab are marketed by South San Francisco, Calif.-based Genentech, a member of the Roche Group. Lapatinib is marketed by GlaxoSmithKline, based in Research Triangle Park, N.C.

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In This Together

Tackling the Challenges of a Cancer Diagnosis as a Couple

by by Suzanne B. Phillips, PSYD, ABPP, CGP, FAGPA

A traumatic event is one that is life threatening, unimaginable, and unexpected. One that can assault your body, your spirit, and your life as you know it. For a couple, a cancer diagnosis is a traumatic event for both partners. But when you each recognize your strength as a couple, you have a physical and psychological advantage in this journey.

Diagnosis
One of the first challenges you will face is the diagnosis itself. For the person diagnosed, the news may feel like a threat to your sense of self. It’s psychologically jolting to go from being a mother, soccer coach, or retired golfer to a person with cancer in the time it takes to hear three words: “You have cancer.”

For the partner, you also take on a new definition of self – you are now a caregiver who often feels helpless and wonders, “What can I do to make it better?”

Partners are often afraid of upsetting one another, so they hide what they are feeling and thinking. However, it is better to communicate openly.

For both of you, there are often feelings of shame, blame, or guilt for what you feel you could have or should have done. These feelings are normal, but the reality is that no one can control all aspects of life. Use your energy to look forward together, not backward.

Initial Reactions
As with any lifealtering event, you may both experience anxiety; difficulty sleeping, eating, relaxing, and concentrating; intrusive thoughts, dreams, or worries; and avoidance or numbness. It is very helpful for one partner to be a compassionate presence to the one experiencing distress, whether that means listening in the middle of the night, taking a walk, or cooking together. In most cases, these reactions subside within a few weeks, particularly as the treatment plan becomes clearer.

Communication
Partners are often afraid of upsetting one another, so they hide what they are feeling and thinking. However, it is better to communicate openly. Try asking your partner, “Can I share some of what I am feeling?” Or say, “I wanted to tell you what I was worrying about. Is that OK?” People are often relieved to be able to share their feelings with their partner. Expressing appreciation of each other’s courage and help is important.

It is also a good idea to talk together about when and how you will tell your children, family, friends, and coworkers about the diagnosis. Overall, people rarely regret telling others about their cancer, but it can be very burdensome to give constant updates. Designating one person to keep everyone else updated will help you maintain connections.

Treatment
Having two sets of ears listening during medical appointments is always better than one. Partners have that advantage.

Stress Reduction
Cancer seems to freeze time and can absorb all of your attention, making it difficult to focus on anything else. It is crucial, however, for partners to give each other permission to return to their individual stress reducers and networks of support – her friends, his golf, her piano, his therapist. These resources double your reserves and expand your support.

Cancer does not define you or your life as a couple. You need to help each other hold on to the things that define you, be it the love of pets, travel, or sharing funny stories. Perhaps the best thing a couple can do as they cope with a cancer diagnosis is take turns holding on to hope. Being together as you face the unknown can reduce your fear and strengthen your bond.

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Steps to Help You Stop Smoking for Good

by Thomas H. Brandon, PhD, and Vani Nath Simmons, PhD

After receiving a cancer diagnosis, some people feel that there is no longer any point to quitting smoking, that it is now too late. However, it is never too late to quit smoking. Indeed, quitting smoking can be especially important for cancer survivors.

There are both immediate and longterm benefits for survivors who quit smoking as soon as possible and stay smoke-free. Among the immediate benefits are fewer treatment-related side effects, fewer treatment complications, better treatment outcomes, improved post-surgical wound healing, and lower risk of infection. Cancer survivors who quit smoking are happier, report less pain, and enjoy a better quality of life. Long-term benefits for cancer survivors include better survival rates, lower risk of cancer recurring, and lower risk of developing a new cancer.

The first step to quitting smoking is setting a quit date as soon as possible. It is best to quit smoking before cancer treatment begins, but it is never too late.

The first step to quitting smoking is
setting a quit date as soon as possible.

When you initially quit, your first challenge will be to deal with nicotine withdrawal symptoms, such as irritability, sleep disturbances, trouble concentrating, and tobacco cravings. Fortunately, several medications are available that are very effective at reducing cravings and withdrawal symptoms. These include nicotine replacement products, such as gums, patches, lozenges, nasal sprays, and inhalers, which allow you to taper off nicotine more gradually, as well as a couple of non-nicotine medications, such as bupropion (Zyban®) and varenicline (Chantix®). Your healthcare provider can help you decide which medication is best for you.

It is also important to learn ways to cope with the inevitable tobacco cravings. Successful quitters learn to distract themselves until the urge to smoke passes. For example, they may take a drink of water, go for a walk, or call a friend. It can also be helpful to think about something else when you have an urge to smoke. You can reflect on why you want to quit, tell yourself that smoking is not an option, or remind yourself that the urge will pass in a few minutes. Studies show that smokers who use both medication and urge-coping skills are the most successful at achieving a smokefree lifestyle.

Smokers often use cigarettes as a way to cope with stress and negative moods, such as sadness, anxiety, anger, or boredom. Successful quitters find other ways to deal with stress and unpleasant emotions, such as deep breathing; engaging in physical activities, like walking or gardening; and seeking support from friends and family. Because cancer diagnosis and treatment often cause great stress and anxiety, it is especially helpful for survivors to find coping mechanisms that are safer alternatives to smoking.

Once you quit smoking, your goal is to do whatever you can to avoid having a cigarette. However, if you do have one, don’t beat yourself up. Instead, get rid of any other cigarettes you have, try to learn from the experience, and recommit to quitting right away.

Although cancer can be a time when many things may feel out of your control, you can take control of your health by quitting smoking.

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Caring for Your Mind and Body through Cancer

by Donna Wilson, RN, MSN, RRT, and Diana Sadtler, BS, CPT-NASM, CES

People making the journey through cancer treatment find that life changes in many ways. The road to recovery is different for everyone, but taking care of your mind and body is critical.

Drink Up
People undergoing cancer treatment have a higher risk of dehydration due to side effects such as nausea, vomiting, and diarrhea. Water removes toxins, regulates body temperature, and protects your organs and tissue, making fluids critical. Mild dehydration can cause headaches, weakness, dry mouth, constipation, and dry skin. More severe dehydration will cause rapid heartbeat, fever, and low blood pressure. Talk with your doctor about the best ways for you to stay hydrated, and remember these tips:

• When you feel tired, keep drinks close by so you don’t have to get up to get a drink.
• Keep a water bottle with you when you’re away from home, and take small sips of water all day.
• Suck on ice chips or ice pops.
• If you have mouth sores, apply moisturizer or medicated ointment to ease the pain of drinking and eating.
• Most importantly, seek medical assistance if you become overly dehydrated.

Learn and Share
The unknowns of cancer can cause fear and worry. Take control by learning all that you can about the disease, its treatment, and recovery. Knowledge will give you a sense of power over your cancer and help you better cope with what lies ahead.

If you’re undergoing cancer treatment, you have a higher risk of dehydration. Keep a water bottle with you, and take small sips of water all day.

Anxiety and sadness are normal reactions to a cancer diagnosis. To help maintain your emotional health, seek support from a family member, friend, support group, health professional, or spiritual advisor. Sharing your situation with others may help you get through difficult treatments, improve your inner strength, and give you a positive outlook.

Practice Healthy Eating Habits
Side effects associated with cancer therapy often affect eating habits, causing poor nutrition at a time when your body needs to be in good shape to fight and to heal. Loss of appetite, food sensitivity, altered taste and smell, mouth sores, nausea, and other side effects may contribute to a change in eating habits.

Eating healthy food promotes adequate body weight and supports the cells and tissues needed to fight infection, as well as the disease. In order to get the nutrition you need while you’re experiencing treatment-related side effects, consume several smaller meals throughout the day rather than three large meals, eat the most when you are hungriest (no matter the time of day), drink protein-rich smoothies if your appetite is low, and sample new foods for variety. As always, eat plenty of fruits, vegetables, whole grains, lean protein, and complex carbohydrates.

Keep Moving
Recent studies show that daily activity can improve physical performance, strengthen bones, increase quality of life, and decrease cancer-related fatigue. Physical activity also helps manage stress and can lower your risk for depression. The status of your health will determine the proper exercise program for you, and as your health changes, so will your program. There is no onesize- fits-all regimen, because everyone experiences treatment and recovery differently. Get the green light from your physician before starting any exercise program. Upon consent, consider teaming up with a health professional to guide you through the process safely and successfully.

Move On
Life after cancer is different from life before cancer. Some people experience physical changes, others experience emotional changes, and some deal with both. Cancer can dominate your life for a long time, and getting back into your daily routine can be challenging. First, acknowledge that your life is not the same as before. You may struggle with a shift in priorities, worry about your job, or view the future differently now. This is normal. Recognizing and accepting these changes will help you move ahead.

Second, full participation in life is mandatory. Dive back into your daily routines, work, and community as soon as possible. This may take some time as your recovery progresses, but stay positive.

Finally, help others. Your story and experience can help others who are on the same journey. Volunteering at a cancer hospital or participating in a cancer support group will not only help others, but it may also help you to move forward.

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The Importance of Social Support during Cancer

by Barbara L. Andersen, PhD

Having cancer can be an isolating experience. But during this time, social support is very important. The challenge for you is to figure out what type of support you need, from whom to get it, and how long you will need the support. For people with many social connections, friends and family are good resources with which to begin. For those with few relationships, healthcare professionals, peers, and other cancer survivors may instead provide solace and support.

Why Social Support Is Important
We seek close connections with others because, from these relationships, we gain attachment – the feeling of bonding and security with another. Close relationships provide guidance, advice, and support when it’s needed. Relationships, by definition, provide social integration with another, including a sense of shared values, interests, and companionship. They also allow for reciprocation, the opportunity for you to provide nurturance, love, and care in return. When you feel like you have support, you feel cared for, loved, and valued. Support from friends, family, spouses, social organizations, your church, and other sources can provide satisfaction with life and all-around better physical and mental health.

Close relationships provide guidance, advice, and support when it’s needed.

How Stress Plays a Part
Stress influences our physiology, our mind, and our behavior. With something as significant as the diagnosis of cancer, your confidence in managing the stress that comes with it can plummet. Knowing that support from others is available and adequate provides you with a tremendous resource, even if you may not realize it, by helping you cope with stressful events and reducing your stress levels. Without support from others during cancer, stress can linger and possibly worsen, and you face an increased risk for depression. Additionally, chronically stressful relationships, such as a difficult marriage, can also cause depression, slowed recovery, and increase the risk for health problems.

How to Find Support
If you feel you need more support than your current relationships can provide, seeing a mental health professional could be helpful. In addition to standard face-to-face therapy with a psychologist or counselor, many hospitals offer support services and group resources, including specialized support groups for specific cancer types. Even if support groups are not available, most communities have educational programs for cancer survivors.

Before you join a support group, find out who is leading the group and what their prior training is. You might also want to know what kind of survivors usually make up the group (for example, the newly diagnosed, people with recurrence, or breast cancer survivors). It’s important to find a group whose membership and focus is tailored to your needs and concerns. You might also ask for a referral to former members to ask about their experience with the group so you can make a decision.

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Exploring Your Treatment Options for Prostate Cancer

Men with prostate cancer have many treatment options. These options include active surveillance, surgery, radiation therapy, hormone therapy, chemotherapy, and immunotherapy. You may receive more than one type of treatment.

The treatment that’s best for one man may not be best for another. The treatment that’s right for you depends mainly on your age, Gleason score (grade) of the tumor, stage of prostate cancer, your symptoms, and your general health. At any stage of disease, you can talk with your healthcare team about ways to manage pain and other symptoms, relieve the side effects of treatment, and ease emotional concerns.

Active Surveillance
Your doctor may suggest active surveillance if you’re diagnosed with early-stage prostate cancer that seems to be growing slowly. Your doctor may also offer this option if you are older or have other health problems.

Active surveillance is putting off treatment until test results show that your prostate cancer is growing or changing. If you and your doctor agree that active surveillance is a good idea, your doctor will check you regularly. You’ll get digital rectal exams and PSA tests. After about a year, your doctor may order another prostate biopsy to check the Gleason score. Your doctor may suggest treatment if your Gleason score rises, your PSA level starts to increase, or you develop symptoms.

If you choose active surveillance but grow concerned later, remember that you can change your mind and begin treatment at any time.

Surgery
This is an option for men with early-stage cancer that is found only in the prostate. It’s sometimes also an option for men with advanced prostate cancer to relieve symptoms.

If you choose active surveillance but grow concerned later, remember that you can change your mind and begin treatment at any time.

There are several kinds of surgery to treat prostate cancer. Usually, the surgeon will remove the entire prostate and nearby lymph nodes. Your surgeon can describe each kind of surgery, compare the benefits and risks, and help you decide which kind might be best for you. The entire prostate can be removed in several ways:

♦ Through a large cut in the abdomen
The surgeon removes the prostate through a long incision in the abdomen below the belly button. This is called a radical retropubic prostatectomy. Because of the long incision, it’s also called an open prostatectomy.

♦ Through small cuts in the abdomen
The surgeon makes several small cuts in the abdomen, and surgery tools are inserted through the small cuts. A long, thin tube (a laparoscope) with a light and a camera on the end helps the surgeon see the prostate while removing it. This is called a laparoscopic prostatectomy.

♦ With a robot
The surgeon may use a robot to remove the prostate through small incisions in the abdomen. The surgeon uses handles below a computer display to control the robot’s arms.

♦ Through a large cut between the scrotum and anus
The surgeon removes the prostate through an incision between the scrotum and anus. This is called a radical perineal prostatectomy. It’s a type of open prostatectomy that is rarely used anymore.

Other surgery options for treating prostate cancer or relieving its symptoms include

♦ Freezing
For some men, cryosurgery is an option. The surgeon inserts a tool through a small cut between the scrotum and anus. The tool freezes and kills prostate tissue.

♦ Heating
Doctors are testing high-intensity focused ultrasound therapy in men with prostate cancer. A probe is placed in the rectum. The probe gives off high-intensity ultrasound waves that heat up and kill the prostate tumor.

♦ TURP
A man with advanced prostate cancer may choose transurethral resection of the prostate (TURP) to relieve symptoms. The surgeon inserts a long, thin scope through the urethra. A cutting tool at the end of the scope removes tissue from the inside of the prostate. TURP may not remove all of the cancer, but it can remove tissue that blocks the flow of urine.

The time it takes to heal after surgery is different for each man and depends on the type of surgery. You may be in the hospital for one to three days. After surgery, a tube will be inserted into your penis to allow urine to drain from your bladder while the urethra is healing from the surgery. You’ll have the tube for five to fourteen days. Your nurse or doctor will show you how to care for it.

Some men may lose control of the flow of urine (urinary incontinence) after surgery. Most men regain at least some bladder control after a few weeks. Your nurse or doctor can teach you an exercise to help you recover control of your bladder. For some men, however, incontinence may be permanent. Your healthcare team can show you ways to cope with this problem.

Surgery may also damage nerves near the prostate and cause erectile dysfunction. Sexual function usually improves over several months, but for some men, this problem can be permanent. Talk with your doctor about medicine and other ways to help manage the sexual side effects of prostate cancer treatment.

If your prostate is removed, you’ll have dry orgasms, which means you’ll no longer release semen. If you wish to father children, you may consider sperm banking before surgery.

Radiation Therapy
This type of treatment is an option for men with any stage of prostate cancer. Men with early-stage prostate cancer may choose radiation therapy instead of surgery. It may also be used after surgery to destroy any remaining cancer cells in the area. In men with advanced prostate cancer, radiation therapy may be used to help relieve pain.

Radiation therapy uses high-energy rays to kill cancer cells. It affects cells only in the part of the body that is treated. Doctors use two types of radiation therapy to treat prostate cancer. Some men receive both types:

♦ External radiation therapy
The radiation comes from a large machine outside the body. Computers may be used to more closely target the prostate cancer. For example, intensity-modulated radiation therapy, proton radiation therapy, and three-dimensional conformal radiation therapy are types of radiation therapy that use computers to lessen damage to healthy tissue. Treatments are usually five days a week for eight to nine weeks. Each treatment session lasts only a few minutes.

♦ Internal radiation therapy, or brachytherapy
Two methods of internal radiation therapy are used for men with prostate cancer. One method places dozens of radioactive seeds inside needles, and the needles are inserted into the prostate. When the needles are removed, the seeds are left behind. The seeds give off radiation for a few weeks or months. They don’t need to be removed once the radiation is gone, and you won’t need to stay in the hospital for treatment.

Another method involves inserting several tubes into the prostate. Radioactive material is loaded into the tubes. The treatment session lasts for a few minutes, and the radioactive material is removed. This treatment may be repeated as many as five times. You’ll stay in the hospital for one or two days, and then the tubes will be removed. When you leave the hospital, no radioactivity remains in your body.

Side effects depend mainly on the type of radiation therapy you receive and how much radiation is given. You’re likely to become tired during external radiation therapy, especially in the later weeks of treatment. Although getting enough rest is important, most people say they feel better when they exercise every day. Try to go for a short walk, do gentle stretches, or do yoga.

Radiation therapy can also harm the skin. During external radiation therapy, it’s common for the skin in the treated area to become red, dry, and tender. The skin near the anus is especially sensitive. Check with your doctor before using lotion or cream on the treated area. You may lose hair in the treated area, and it may not grow back. Brachytherapy may make the area look swollen and bruised. After treatment is over, the skin will slowly heal.

You may wish to discuss with your doctor the possible long-term effects of radiation therapy for prostate cancer. Radiation may harm the penis, rectum, and bladder, and side effects may develop six months or more after treatment ends. For example, both types of radiation therapy may cause erectile dysfunction, bleeding from the rectum, diarrhea, or rectal discharge. Other possible problems include finding blood in your urine, feeling an urgent need to empty your bladder, or needing to empty your bladder more often than you used to.

Hormone Therapy
Men with advanced prostate cancer usually receive hormone therapy. In addition, a man with early-stage prostate cancer may have hormone therapy before, during, and after radiation therapy. Hormone therapy may also be used after surgery.

Hormone therapy keeps prostate cancer cells from receiving male hormones (androgens such as testosterone), which can cause prostate cancers to grow. Types of hormone therapy include

• A drug that can prevent the testicles from making testosterone (LH-RH agonist)
• A drug that can block the action of male hormones (antiandrogen)
• Surgery to remove the testicles, which are the body’s main source of testosterone
• A drug that can prevent the adrenal glands from making testosterone

The side effects of hormone therapy depend on the type used. The most common side effects are erectile dysfunction, hot flashes, and loss of sexual desire. Other possible side effects include breast growth, an increase in body fat around the waist, and an increase in sugar level in your blood. Hormone therapy can also weaken your bones. Your doctor can suggest medicines that may reduce your risk of breaking a bone.

An LH-RH agonist may make pain and other symptoms worse at first. This temporary problem is called a flare. To prevent a flare, your doctor may give you an antiandrogen for a few weeks along with the LH-RH agonist.

Chemotherapy
This type of treatment may be used for men with advanced prostate cancer. Chemotherapy uses drugs to kill cancer cells. You may receive chemotherapy in a clinic, at the doctor’s office, or at home. Men rarely need to stay in the hospital during treatment.

The side effects depend mainly on which drugs are given and how much. Chemotherapy kills fast-growing cancer cells, but the drugs can also harm normal cells that divide rapidly, such as blood cells, cells in hair roots, and the cells that line the digestive tract. Other side effects include shortness of breath and a problem with your body holding extra water. Most of these problems go away when treatment ends.

Immunotherapy
This treatment may be used for men with advanced prostate cancer who are not helped by hormone therapy. Immunotherapy stimulates the immune system to kill cancer cells. For immunotherapy for prostate cancer, a treatment is made from some of your own blood cells. You’ll receive a total of three injections of treatment. The injections are given one at a time, usually two weeks apart. This type of immunotherapy is also known as a treatment vaccine.

The most common side effects are headache, backache, fatigue, and having a fever and chills. These effects usually go away.

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How I Rebooted My Life after Cancer

by Francine Brokaw

When I was diagnosed with breast cancer at age 38, it was a complete shock. I was the first woman in my family to have breast cancer. I was a writer and had been a tennis instructor years before, and I still enjoyed playing whenever I could. But what I did for a living didn’t matter at that moment; all I wanted to do was get the cancer out of my body and get on with my life.

My doctor looked at the results of my lumpectomy and recommended a bilateral mastectomy, which, after careful consideration and research, I agreed to.

Part of the process involved removing many of the lymph nodes from under my arm. Unfortunately, several months after my surgery, I developed lymphedema. The lymphatic system is what moves fluids throughout the body, and removing my lymph nodes caused a sort of traffic jam of fluids in my arm. I now live with pain, swelling, discomfort, and physical limitations caused by the lymphedema.

Cancer placed limitations on what I could do, but that didn’t stop me from forging a new path for my life.

However, instead of giving up and giving in, I rebooted my life. I couldn’t play tennis anymore, but I wasn’t going to let it bring me down. Instead, I focused on positive things, like writing and painting. That’s when I began to reinvent myself, and it led to a new career as an entertainment writer.

I had been writing nearly all of my life, but I never considered entertainment writing as a career option. Then one day, an idea came to me. I love entertainment, and like most people, I use music, TV, and movies as a way to escape from the stressors of life. Plus, I love to write. Marrying two of my passions – entertainment and writing – was something I had never thought to do, but it seemed like the perfect combination.

Entertainment journalism was never on my radar – never in my wildest dreams! But I dove head on into this new endeavor and carved out a successful career. I even wrote a book about the business of entertainment journalism.

When I speak with cancer survivors today, I try to stay positive and tell them that a cancer diagnosis is not a death sentence. It can actually open the door for new adventures in your life. Take me, for example. Cancer placed limitations on what I could do, but that didn’t stop me from forging a new path for my life. Let yourself be open to new things. Try things that you have never thought of doing before. Enjoy them. And enjoy yourself.

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What Happens to My Skin During Radiation Therapy?

Radiation therapy causes skin cells to break down and die. When people get radiation almost every day, their skin cells do not have enough time to grow back between treatments. Skin changes can happen on any part of the body that gets radiation. Here are some common skin changes:

◊ Redness Your skin in the treatment area may look as if you have a mild to severe sunburn or tan. This can occur on any part of your body where you are getting radiation.

◊ Pruritus The skin in your treatment area may itch so much that you always feel like scratching. This causes problems because scratching too much can lead to skin breakdown and infection.

◊ Dry and peeling skin This is when the skin in your treatment area gets very dry – much drier than normal. In fact, your skin may be so dry that it peels like it does after a sunburn.

◊ Moist reaction Radiation kills skin cells in your treatment area, causing your skin to peel off faster than it can grow back. When this happens, you can get sores or ulcers. The skin in your treatment area can also become wet, sore, or infected. This is more common where you have skin folds, such as your buttocks, behind your ears, or under your breasts. It may also occur where your skin is very thin, such as your neck.

Radiation kills skin cells in your treatment area, causing your skin to peel off faster than it can grow back.

◊ Swollen skin The skin in your treatment area may be swollen and puffy. Skin changes may start a few weeks after you begin radiation therapy. Many of these changes often go away a few weeks after treatment is over. But even after radiation therapy ends, you may still have skin changes. Your treated skin may always look darker and blotchy. It may feel very dry or thicker than before. And you may always burn quickly and be sensitive to the sun. You will always be at risk for skin cancer in the treatment area.

Managing Skin Changes
Good skin care is the first step to managing skin changes during radiation therapy. Be gentle and do not rub, scrub, or scratch in the treatment area. Also, use creams that your doctor prescribes.

Do not put anything on your skin that is very hot or cold. This means not using heating pads, ice packs, or other hot or cold items on the treatment area. It also means washing with lukewarm water.

Be gentle when you shower or take a bath. Make sure to use a mild soap that does not have fragrance or deodorant in it. Dry yourself with a soft towel by patting, not rubbing, your skin. Be careful not to wash off the ink markings that you need for radiation therapy. You can take a lukewarm shower every day. If you prefer to take a lukewarm bath, do so only every other day and soak for less than 30 minutes. Ask your doctor or nurse if you can shave the treated area. If you can shave, use an electric razor and do not use pre-shave lotion.

Use only those lotions and skin products that your doctor or nurse suggests. If you are using a prescribed cream for a skin problem or acne, you must tell your doctor or nurse before you begin radiation treatment. Check with your doctor or nurse before using bubble bath, cornstarch, cream, deodorant, hair removers, makeup, oil, ointment, perfume, powder, soap, or sunscreen.

Wear soft clothes and use soft bed sheets. Do not wear clothes that are tight, such as spandex and pantyhose. Do not put bandages, Band-Aids®, or other types of sticky tape on your skin in the treatment area. Talk with your doctor or nurse about ways to bandage without tape.

Protect your skin from the sun every day. The sun can burn you even on cloudy days or when you are outside for just a few minutes. You will need to protect your skin from the sun even after radiation therapy is over, since you will have an increased risk of skin cancer for the rest of your life.

If you have radiation therapy to the rectal area, you are likely to have skin problems. These problems are often worse after a bowel movement. Clean yourself with a baby wipe or squirt of water from a spray bottle. Also, ask your nurse about sitz baths (a warmwater bath taken in a sitting position that covers only the hips and buttocks).

Some skin changes can be very serious. Your treatment team will check for skin changes each time you have radiation therapy. Make sure to report any skin changes that you notice to your doctor or nurse. Medicines can help with some skin changes, including antibiotics to treat infection and lotions and gels to protect, moisturize, and give relief.

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Cultivating an Attitude of Gratitude

by Betsy Kohn, MA, PC, and Mary Fisher Bornstein, LISW-S

What does it mean to be grateful? Does living a life where you practice gratitude change your perspective? Do you notice any changes in your relationships with others or with yourself when you practice an attitude of gratitude? These questions often arise for those who focus on the concept of gratitude. For those on the cancer journey, these questions may surface both during and after treatment, as this is often a time of reflection and contemplation.

Even when times are difficult and challenging, we still have control over our attitude.

It can feel overwhelming when you hear you have been diagnosed with cancer. Studies have shown that those who can eventually replace their fears and feelings of uncertainty with joy and gratitude often lead happier, more peaceful and serene lives. They experience a sense of calmness and are able to live in the present moment instead of worrying about what has already happened or what may happen in the future.

People who make an effort to practice gratitude report that their positive perspective on life allows them to appreciate the fact that wherever they are and whatever they are doing, it is enough; they have chosen to let go of worry and negative thoughts. Reframing and refocusing helps create a more balanced, happy lifestyle, which allows them to be more productive and energized.

Practicing gratitude means appreciating what you have and focusing on the support you receive from others. Gratitude is a choice. It can help you see the true beauty in life. It can also improve your health, emotional well-being, and relationships. To begin to live in a grateful state, start simple – say thank you on a regular basis, count your blessings, show someone you love them, take pleasure in nature, spend time with family and friends, and offer encouragement and support to someone in need. Even when times are difficult and challenging, we still have control over our attitude.

Here are a few more simple ways to begin practicing gratitude:

Additional benefits of practicing gratitude include feeling more optimistic, more rested, better equipped to handle tough situations, more likely to make progress toward goals, and less envious of others. People who practice gratitude report they are more open to recognizing the good in themselves and others. As the seasons evolve, take time to recognize the gifts that are offered and be grateful. Experience new growth and renewal in the spring, be playful and creative during the summer, reflect on your life during the fall, and celebrate special occasions with family and friends in the winter.

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5 Tips for the Cancer Caregiver

by Deborah J. Cornwall

Caregivers are at the center of the cancer experience, though they’re often invisible. Every­one asks how the person in treatment is doing, but people just assume that you, the caregiver, are fine, because they see you soldiering on.

Everyone who is diagnosed with can­cer needs an engaged caregiver who will manage access to treatments, sustain some normalcy day-to-day, and fuel hope for a cancer-free future. If you’re new to the caregiver role, here is some ad­vice to help you get the lay of the land.

Effective caregiving requires de­liberate planning.
Caregivers become experts at both planning and improvising, going with the flow and inventing new ways to solve unexpected problems. Just as you plan for other major life events, like graduations and weddings, you also need to plan for caregiving, even if you are dropped into the role without warn­ing and have no idea what’s to come.

Cancer caregiving involves a three-way partnership among the person in treatment, the caregiver, and the health­care team. To make the partnership work well, a caregiver needs to serve as an active information conduit. Ask questions that the person in treatment may be too sick, tired, or frightened to ask. Take de­tailed notes at every doctor’s visit; don’t assume that your loved one will digest or remember everything that’s said. And push back respectfully when necessary. If the medical team isn’t prepared for this approach, keep looking until you find a medical team that expects such interaction.

Caregivers become experts at both planning and improvising, going with the flow and inventing new ways to solve unexpected problems.

Discuss early with your loved one how much information each of you wants to receive about the illness, its progres­sion, chances of recurrence, and the relative threat to survival.

Don’t try to be Superman or Super­woman.
No caregiver can do the job alone. Friends usually want to help, and they generally don’t pull away unless the caregiver makes it hard to get close.

Both you and your loved one need friends, now more than ever, and there’s no way to know how long the caregiving role will last. It could be a few weeks or more than 20 years. You may well need friends and their help later on, especially if you experience caregiver fatigue. Re­mind your friends that you’re determined to maintain your social connections, even if your visits with them are shorter or closer to home.

Learn early about hospital resources (both social services and palliative care) to streamline your caregiving, improve comfort for your loved one, and help you cope with the unexpected. Use online tools (like LotsaHelpingHands.com or TakeThemAMeal.org) to communi­cate your needs and organize volunteers easily. You can also keep friends and family members informed about treat­ment updates and milestones using online tools like CaringBridge.org.

Live as though there’s no tomorrow, even as you fight for tomorrows.
You are both more than the cancer, so make your time together count. Appreciate and take full advantage of the life you have rather than mourning what you’ve lost.

Maintain at least one normal activ­ity from your before-cancer life.
Just like airline crews, who put their oxygen masks on before helping anyone else, caregivers must take care of themselves without feeling guilty or selfish.

Some caregivers engage in physical activities that can be done alone with little planning, like biking or running. Others’ hobbies are more interactive, like book groups or playing in a band. Some endeavors, like writing poetry or painting, provide private moments. What matters is that each activity is a reminder of nor­malcy and a refreshing stress reliever.

Be prepared for cancer to change your life.
The cancer experience is life changing regardless of its outcome. Care­givers describe it as a wake-up call about what’s important. Some say they devel­oped patience for the first time and now appreciate the little things – the family trip that made them forget about the can­cer for a little while, seeing their loved one cradling her first grandchild, or the thoughtful neighbor who always knew the right moment to mow the lawn or take the kids to the movies.

Caregiver resilience is a tribute to the power of the human spirit to do super­human things, maintain hope in the face of adversity, and heal in surprising ways. Caregivers never forget the experience, but they are often surprised by their own strength, resourcefulness, and adaptability.

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Healing the Greatest Wound

by Ella Strzepa

“OK,” I said to myself as I took one more glance at the prosthesis that was lying on my bed. “It’s just another chal­lenge; I’ll be fine,” I thought. Then I picked up my crutches, shoulder bag, and keys and left the apartment.

It was supposed to be my first day back at work after taking a week-long vacation to celebrate my 30th birthday, settle into my new apartment, and let the wound on my stomach caused by the prosthetic socket heal.

Unfortunately, the wound kept getting worse, and I was forced to see a special­ist, who recommended that I not wear my prosthesis until the wound healed. You might think that after 14 years of being an ampu­tee and a cancer survivor, I’d be comfortable in my own skin and all right with not wearing the pros­thesis, but I wasn’t.

I got into my car, started the engine, and drove off. I got to work early, so I parked my car and stayed there for a while, wondering what it was going to be like for everyone to see me. After all, most of my coworkers didn’t even know I was missing a leg.

“Relax,” I said to myself.

As I took a deep breath in, I closed my eyes and suddenly found myself in my orthopedic surgeon’s office 14 years ago.

“She has osteosarcoma of the hip. We will have to amputate her leg,” the surgeon explained to my parents. I was just sitting there, ignored because I didn’t speak the language, and I felt invisible.

I kept ignoring one very important issue – my prosthesis and how much I relied on it to feel normal.

I had moved to New York City from Poland a week before and didn’t speak or understand English well enough to know what was being said, except for two words: cancer and amputation. Not knowing the language meant that I wouldn’t be involved in any deci­sion making.

“She’s lucky,” the surgeon said. “The tumor didn’t spread anywhere else, and she has a better chance of recovery being treated here in New York rather than in Poland.”

I didn’t feel lucky. I was about to lose my leg, along with the life I used to know. And no, I didn’t want to talk about it either.

A year later, I successfully finished treatment, was fitted for my prosthesis, and started a new school.

Years passed, and I found myself graduating from high school, college, and then graduate school with a degree in social work. I wanted to help people, but I felt like a wounded healer. I would smile and put on a brave face even when I felt like crying, all while counseling clients on how to cope with difficult life situations.

It wasn’t until I followed my heart and became an oncology social worker that I realized it was time for my own healing to begin. I learned a lot about what cancer survivors go through, which allowed me to mentally re-experience my cancer and to heal. Somehow, though, I kept ignoring one very important issue – my prosthesis and how much I relied on it to feel normal. That was probably the greatest wound I needed to let heal, but I didn’t realize it until I was forced to live and function without my pros­thetic leg.

Thinking of all this made me so anx­ious that I considered calling in sick to work. Then I heard a knock on the win­dow. I opened my eyes to see one of my coworkers. Too late.

“Hey! Give me a second,” I said as I grabbed my bag and my crutches. When I got out of the car, she looked at me in disbelief.

“What happened?” she asked.

“The wound on my stomach got much worse. I need to let it heal completely before I can wear my leg again.”

“OK,” she said calmly, letting what I had just revealed begin to sink in. As we walked toward the building, I real­ized that by the time I’d be ready to put my prosthesis back on, I’d be a com­pletely different person.

I need to let the wound on my stomach heal, but more importantly, I must allow myself to heal and be­come whole again.

♦ ♦ ♦ ♦ ♦

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On the Job Hunt after Cancer

How to Handle a Resume Gap

Explaining away the gap in work history is one of the most common worries of cancer sur­vivors looking for work. But there is some good news for those facing this challenge today. Because of the ongoing sluggishness of the economy, more and more people have substantial gaps in their resumes. Of course, a down job market isn’t easy to negotiate, but those hiring are not as likely to automatically discount you because of a work gap.

But prejudice still exists. In fact, some state legislatures are moving to ban job ads that discriminate against people who aren’t currently employed.

We know that the gap is weighing heavily on your mind, but experts ad­vise that you don’t address the gap in your cover letter – instead focus on why you are great for that position right now. It’s also important to remember that your diagnosis is confidential, and you do not have to disclose your cancer in an application or interview situation.

Dealing with the Gap
There are many strategies for dealing with a re­sume gap:

♦ List your skills first. List all of your career skills at the top of your resume, and underneath each heading include three to six bullet points that summa­rize your core skills. Then at the bottom of your resume, briefly list the compa­nies you’ve worked for, your job titles, and the years of employment. This for­mat is known as the chronological/functional format.

♦ Forgo the calendar. If you’ve been out of the workforce for several years, omit the calendar year and include in­stead the number of years of service. For example, “Two years of managerial work in customer service.”

♦ Highlight non-career achievements. Include your volunteer and community work, and show how they translate into relevant job skills, such as the ability to multitask, plan events, and organize.

♦ Include freelance and part-time work. Treat your freelance work or part-time work as a career builder. You can, and should, lay out the achievements and skills gained as a consultancy position. The recommended practice for all resumes is to cover in detail only 10 to 15 years in a resume. If that means cer­tain skills and experience you want to highlight won’t be included, add them under the heading “Additional Work Experience” or “Additional Skills.”

Handling the Interview
Hiring ex­perts suggest that when you reach the interview stage, you should pick an explanation for the gap that you are comfortable with – and stick with it. The most important thing is that you have a one-sentence response that you’ve internalized and that is believable.

For example, you might list family issues or health issues but state that these are now resolved and leave it at that. Reinforce that you are ready to go back to work full force. Another alter­native is to talk about the gap in terms of reassessing your career path.

It’s important to remember that your diagnosis is confidential, and you do not have to disclose your cancer in an application or interview situation.

Remember, your diagnosis is yours to share. Don’t think of not mentioning your cancer as lying, you are merely excluding information that is private and protected by law.

Of course, if you do mention taking time out for health issues, some hiring personnel will ask you what health is­sues. This question is actually prohibited by law. But you should be prepared to handle it and other awkward moments in the interview.

That’s why you need to practice for your interview. Find a friend or family member whom you are comfortable with and start interviewing, keeping the following in mind:

♦ Anticipate the responses. Lots of people practice for the big question: “Why is there a gap on your resume?” But think further along to the inter­viewer’s response to your answer. What if they ask for specifics or per­haps suggest that you’ve been out of the mix in your field for too long? Have a quick and positive response ready for those tough follow-ups too.

♦ Turn the conversation back to your strengths. When the interviewer suggests a lack in your experience, turn the conversation around by focusing on your skills. Ask the interviewer for an example of a typical challenge, and tell him or her how you’d solve it.

♦ Assess your uncomfortable areas. If you know what you’re insecure about and prepare, that’s more than half the battle. The interview may not even touch on these areas, but you’ll go in with more confidence knowing you have a ready, positive answer.

♦ Remember that you are focusing more on the gap than they are. This is important. Do prepare for difficult questions, but don’t stress yourself by obsessing on the cancer or the gap. The more comfortable you are, the more comfortable they’ll be.

♦ Keep it simple. Stick with your sim­ple sentence. The interviewer doesn’t want a long explanatory discourse – just an answer.

♦ Practice hard for the traditional screening questions. Don’t forget while practicing for your special circumstances to remember regular, albeit annoying, interview questions. “Tell me about yourself.” “What are your strengths?” “What are your areas for development?” “Where do you want to be a few years from now?” “What would your boss say about you?” There is a reason these questions are standard fare – don’t ne­glect the basics.

There may be times when you feel comfortable enough with the inter­viewer that you want to be frank about your cancer history. You could be inter­viewing with someone who’s just gone through a difficult time with a family member who’s been diagnosed with cancer and is therefore empathetic. Only you can judge when or if the time is right. If you feel that you’re at a place where you want to say something, talk about your experience in a way that shows you acquired skills and employ­able characteristics. It’s another way to frame your cancer experience and use it in a manner that might make you stand out compared to others who are interviewing for a job.

Changing Careers
Perhaps your cancer has made you reconsider your employment past and future. Career changing experts recommend that you spend time doing a self-assessment. Open up your mind to options – the federal government publishes a book with a number of different career titles, descriptions, expected earnings, and more (bls.gov/ooh).

If you are attempting to change careers, your employment gap can easily be attributed to retraining and retooling. But don’t forget to state in your resume summary that you are aiming to change fields so prospective employers can assess your work his­tory with that in mind. Be prepared on your resume and in an interview to show how skills from your past employment translate to your new chosen field.

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Don’t Let Cancer Keep You Up

Tips for Getting a Better Night’s Sleep

by Lisa K. Sprod, PhD

Cancer and its treatment can lead to a number of shortand long-term side effects. Of those side effects, impaired sleep quality is one of the most common and most distressing, affecting up to half of all cancer survivors. People with cancer may experience impaired sleep for a number of reasons, including pain or discomfort from cancer, its treatment, or other causes, and difficulty controlling worrisome thoughts about their health, finances, or friends and family. A person’s sleep quality suffers when they find it difficult to fall asleep or stay asleep, or when they wake up earlier than they would like. This can lead to excessive napping during the day, which subsequently may cause increased difficulty falling asleep the following night. It can become a very difficult pattern to break.

Fortunately, there are a number of recommendations for improving sleep that are fairly simple to implement. The following are tips to help you get a better night’s sleep:

• Exercise daily, but do so at least three hours prior to going to bed. Exercise can reduce stress and promote a more restful night’s sleep. Yoga may be especially beneficial for cancer survivors. Always consult with your doctor before beginning any exercise program.
• Avoid stimulants, such as caffeinated coffee, tea, and soda, for at least eight hours before going to bed.
• Avoid nicotine, which is also a stimulant.

Follow a bedtime routine that helps you relax. This may include taking a warm bath, reading a book, or listening to music.

• Avoid consuming alcohol. Alcohol may make it easier for you to fall asleep, but it will also make it more difficult for you to stay asleep.
• Avoid eating a heavy meal or consuming too much liquid before bedtime. This may lead to excessive nighttime trips to the bathroom.
• Follow a bedtime routine that helps you relax. This may include taking a warm bath, reading a book, or listening to music.
• Go to bed around the same time each night, and wake up at around the same time each morning, if possible.
• Ensure that your bedroom is conducive to a restful night’s sleep and free of distractions. Do not use your computer or watch television in bed. Make sure that the temperature of your bedroom is cool but comfortable so you don’t wake up too warm or too cold during the night. Minimize disturbing noise by turning on a white-noise machine or running a fan.
• Limit the amount of time you spend in bed not sleeping.

If these lifestyle changes alone don’t improve the quality of your sleep, keep a sleep diary. This will help identify your sleep patterns. You can share it with your therapist or physician, who will help you develop a treatment plan.

You may want to consider cognitive behavioral therapy. This type of therapy targets the thoughts and actions that can lead to disrupted sleep. Cognitive behavioral therapy sessions may include discussing your thoughts about sleep and learning relaxation techniques to reduce racing thoughts and anxiety. Researchers have found cognitive behavioral therapy to be beneficial for improving sleep in cancer survivors.

Treatment for difficulty sleeping may also include the use of over-the-counter or prescription sleep medications. However, these treatments are not without potential side effects. They should only be used under the recommendation and guidance of a physician. In addition, these types of treatments do not provide a cure for sleep problems but rather short-term relief.

If you are having difficulty falling asleep or staying asleep, or if you are waking up too early or taking excessive naps during the day, begin making simple adjustments to your daily life, as described. These changes, combined with cognitive behavioral therapy (if needed), can bring about long-term improvement in your sleep quality.

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Take Control of Chemotherapy-Induced Neuropathy

by Cindy Tofthagen, PhD, ARNP

Neuropathy is a common side effect of many chemotherapy drugs. Scientists are looking for ways to prevent chemotherapy-induced neuropathy, but until a solution is found, you can manage this side effect with help from members of your healthcare team.

If you have numbness or tingling in your hands or feet, you probably have peripheral neuropathy. It starts in the fingertips or the toes, and over time can affect more of the hands and arms or feet and legs. Pain in the hands, feet, and legs may also be present. You may have trouble with your balance or have weakness in your legs. Neuropathy in the hands can cause you to have trouble buttoning buttons, holding small objects, writing, and sensing hot or cold temperatures. Neuropathy in the feet can make it difficult to walk, drive a car, or stand for a long time. These symptoms may not become noticeable until you have had several chemotherapy treatments.

It is important for you to talk to your doctor if you are experiencing symptoms of neuropathy. Be sure to tell him or her how much of your hands or feet are affected, what specific symptoms you’re having, and how the symptoms affect your daily activities. If you are currently being treated with chemotherapy, your doctor may need to adjust the dose or try a different chemotherapy drug altogether. He or she may send you to a neurologist, a doctor who specializes in the treatment of diseases affecting the nervous system, to make sure the neuropathy you’re experiencing is caused by the chemotherapy and not something else. A neurologist can also help you manage your symptoms.

Be sure to tell your doctor how much of your hands or feet are affected, what specific symptoms you’re having, and how the symptoms affect your daily activities.

Treatment of chemotherapy-induced peripheral neuropathy has two main goals: controlling pain and helping you function at your best. Not everyone who has chemotherapy-induced neuropathy has pain, but for those who do, relief is possible. Controlling neuropathy pain usually requires different medications from those used for other types of pain. It is important to remember that not every medicine works for everyone, and different people require different dosages to get pain relief.

If neuropathy is affecting your ability to perform normal activities, it’s important to seek help. Many different types of healthcare providers can help you manage your neuropathy.

A physiatrist, a physician who specializes in cancer rehabilitation, can help get you functioning at your best. A physical therapist can help you manage neuropathy by recommending specific exercises to improve your muscle strength and balance. Physical therapy and exercise programs, like yoga and tai chi, can also enhance your emotional well-being. An occupational therapist can work with you to help you maintain your independence, adjust to physical limitations, and get back to doing your usual activities as quickly as possible.

When you have numb feet, it’s important to find shoes that are comfortable, fit properly, and help protect your feet, as small cuts or other foot injuries can go unnoticed. A podiatrist can help you take good care of your feet, recommend good footwear, and fit you for special inserts that will make walking more comfortable.

Case managers, registered nurses, and social workers can help you identify resources within your community to meet your specific needs and facilitate communication between you, your healthcare team, and your insurance company. Support groups and mental health professionals can help you cope emotionally with neuropathy. To locate a support group near you or find additional resources, visit the Neuropathy Association’s website, neuropathy.org.

You can take control of chemotherapy-induced neuropathy by keeping your doctors informed, seeking additional help from the resources above, and being persistent until you get the help that you need.

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U.S. Cancer Mortality Rates Continue to Drop

Special feature highlights trends in HPV-associated cancers and HPV vaccination coverage levels

The Annual Report to the Nation on the Status of Cancer, 1975–2009, shows that overall cancer mortality rates continued to decline in the United States among both men and women, among all major racial and ethnic groups, and for all of the most common cancer sites, including lung, colon and rectum, female breast, and prostate. The special feature section on human papillomavirus (HPV)-associated cancers shows that incidence rates are increasing for HPV-associated oropharyngeal and anal cancers and that vaccination coverage levels in the U.S. during 2008 and 2010 remained low among adolescent girls.

The report, produced since 1998, is co-authored by researchers from the American Cancer Society (ACS), the Centers for Disease Control and Prevention (CDC), the National Cancer Institute (NCI), and the North American Association of Central Cancer Registries (NAACCR). It appears early online in the Journal of the National Cancer Institute and will be published in print issue 3, volume 105.

“While this report shows that we are making progress in the fight against cancer on some fronts, we still have much work to do, particularly when it comes to preventing cancer."

The decline in overall cancer mortality rates continues a trend that began in the early 1990s. From 2000 through 2009, cancer mortality rates decreased by 1.8 percent per year among men and by 1.4 percent per year among women. Mortality rates among children up to 14 years of age also continued to decrease by 1.8 percent per year. During 2000 through 2009, mortality rates among men decreased for 10 of the 17 most common cancers (lung, prostate, colon and rectum, leukemia, non-Hodgkin lymphoma, kidney, stomach, myeloma, oral cavity and pharynx, and larynx) and increased for melanoma of the skin and cancers of the pancreas and liver. During the same 10-year period, mortality rates among women decreased for 15 of the 18 most common cancers (lung, breast, colon and rectum, ovary, leukemia, non-Hodgkin lymphoma, brain and other nervous system, myeloma, kidney, stomach, cervix, bladder, esophagus, oral cavity and pharynx, and gallbladder) and increased for cancers of the pancreas, liver, and uterus.

“The continuing drop in cancer mortality over the past two decades is reason to cheer,” said John R. Seffrin, PhD, chief executive officer of the American Cancer Society. “The challenge we now face is how to continue those gains in the face of new obstacles, like obesity and HPV infections. We must face these hurdles head on, without distraction, and without delay, by expanding access to proven strategies to prevent and control cancer.”

Between 2000 and 2009, overall cancer incidence rates decreased by 0.6 percent per year among men, were stable among women, and increased by 0.6 percent per year among children (ages 0 to 14 years). During that time period, incidence rates among men decreased for five of the 17 most common cancers (prostate, lung, colon and rectum, stomach, and larynx) and increased for six others (kidney, pancreas, liver, thyroid, melanoma of the skin, and myeloma). Among women, incidence rates decreased for seven of the 18 most common cancers (lung, colon and rectum, bladder, cervix, oral cavity and pharynx, ovary, and stomach), and increased for seven others (thyroid, melanoma of the skin, kidney, pancreas, leukemia, liver, and uterus). Incidence rates were stable for the other top 17 cancers, including breast cancer in women and non-Hodgkin lymphoma in men and women.

“While this report shows that we are making progress in the fight against cancer on some fronts, we still have much work to do, particularly when it comes to preventing cancer,” said CDC Director Thomas R. Frieden, MD “For example, vaccinating against HPV can prevent cervical cancer, but, tragically, far too many girls are growing into adulthood vulnerable to cervical cancer because they are not vaccinated.”

The special feature section of the report includes an evaluation of the burden and trends in HPV-associated cancers as well as HPV vaccination coverage levels among adolescent girls. The report shows that from 2000 through 2009, incidence rates for HPV-associated oropharyngeal cancer increased among white men and women, as did rates for anal cancer among white and black men and women. Incidence rates for cancer of the vulva increased among white and black women. Rates of cervical cancer declined among all women except American Indian/Alaska Natives. In addition, cervical cancer incidence rates were higher among women living in low versus high socioeconomic areas. Among men, rates for penile cancer were stable.

“This year’s Report correctly and usefully emphasizes the importance of HPV infection as a cause of the growing number of cancers of the mouth and throat, the anus, and the vulva, as well as cancers of the uterine cervix, and the availability of vaccines against the major cancer-causing strains of HPV” said NCI Director Harold Varmus, MD “But the investments we have made in HPV research to establish these relationships and to develop effective and safe vaccines against HPV will have the expected payoffs only if vaccination rates for girls and boys improve markedly.”

The report also showed that in 2010, fewer than half (48.7 percent) of girls ages 13 through 17 had received at least one dose of the HPV vaccine, and only 32 percent had received all three recommended doses. Vaccination series completion rates were generally lower among certain sub-populations, including girls living in the South, those living below the poverty level, and among Hispanics. The national three-dose coverage estimate among girls ages 13 through 17 in 2010 falls well short of the U.S. Government’s Healthy People 2020 target of 80 percent for three-dose coverage among girls ages 13 through 15, and is much lower than vaccination rates reported in Canada (50-85 percent) and the United Kingdom and Australia combined (greater than 70 percent). The authors note that low overall vaccine uptake in the U.S. is likely due to a number of issues, including inadequate provider recommendations, provider reimbursement concerns, infrequent use of reminder/recall systems that would foster completion of the three-dose series, and other factors.

“As incidence rates for some HPV-associated cancers continue to rise,” noted NAACCR director Betsy Kohler, “these cases will contribute to the overall growing number of cancers associated with population aging and expansion, requiring additional resources for medical research and treatment, in addition to our careful tracking of these trends.”

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Survivor Winner Ethan Zohn on Surviving Hodgkin Lymphoma

by Jessica Webb Errickson

In 2002, Ethan Zohn overcame the elements and pushed his mind and body to the limit, outwitting, outplaying, and outlasting 15 fierce competitors to win the million-dollar prize on Survivor: Africa. Less than a decade later, Ethan would once again have to push his mind and body to the limit in order to survive.

This time, he was facing a one-on-one duel with Hodgkin lymphoma. And in true survivor fashion, Ethan defeated his opponent not just once, but twice.

A life-long athlete, Ethan was 35 years old and training for the New York City Marathon when his cancer battle began. “I had really itchy skin,” Ethan recalls in an interview with Coping®, “and I couldn’t figure out what was going on.”

It wasn’t until a lymph node under his left collarbone became visible that Ethan got an answer. Tests revealed that his debilitating itch was a symptom of Hodgkin lymphoma. “It was a little bit of a relief to get that diagnosis,” Ethan admits, “because now we could start treating it.”

Treatment began with chemotherapy, which forced Ethan to shed his famously curly locks. When his cancer continued to grow, radiation was the next step.

“I thought of this as the biggest soccer game of my life – the championship match worth all the marbles.”

“There were times I felt like my body had turned against me,” Ethan says. “I couldn’t eat; I couldn’t sleep; I had no energy. It was probably the worst ex­perience of my life, but on the flip side, I knew this was a process that had the ability to cure me of lymphoma forever. So I had to have trust in the process.”

Twenty-two rounds of radiation later, Ethan was in remission. He underwent an autologous stem cell transplant and, once he recovered, began to move on with his life. Naturally, the fear of re­currence was always there. “Every single day, I would wake up and there would be a little bit of a fear that the cancer had returned,” Ethan confesses.

After almost two years of remission, just as life was getting back to normal, Ethan’s symptoms resurfaced. His fears were confirmed when 70 cancerous nodes were found in his chest during a regular PET scan.

“It was much more difficult the sec­ond time around,” Ethan says. “When your doctor has tried multiple ways of healing you that don’t work, you panic. You lose hope. You crave survival.”

Ethan was given Adcetris®, a “smart” form of chemotherapy that would target only the cancer cells. With this new drug, Ethan avoided the unpleasant side effects of standard chemotherapy and was even able to run the New York City Marathon.

The drug got Ethan into remission, and he underwent his second stem cell transplant, an allogeneic transplant us­ing his brother Lee’s donor cells. The transplant was successful but left him vulnerable to infections, so with recov­ery came restrictions. “I couldn’t use public transportation. I couldn’t go to movie theaters or restaurants. I couldn’t be around large crowds or little children,” he says. “New York City is probably the worst place to live if you’re not allowed outside.”

So what kept this former professional soccer player fighting through his two rounds with lymphoma? He turned it into an athletic competition, of course. “I thought of this as the biggest soccer game of my life – the championship match worth all the marbles,” Ethan explains. “I set in my mind that I’m go­ing to play this game. It might be a really long game, but I will win. I will come out on top.”

Ethan has gained a lot of attention from the irony that he was on the tele­vision show Survivor and is now a cancer survivor. “I guess I’m happy I wasn’t on that show Six Feet Under or The Walk­ing Dead,” he jokes.

In a way, though, Ethan can relate his cancer experience with his time on Sur­vivor. “The game of Survivor touches on every part of you as a human being – mental, physical, spiritual, emotional, environmental – in a similar way that cancer touches you,” he says. “I think I learned how far I can push my body, and I carried that into my cancer fight.”

Ethan is very open about his experi­ence, and he encourages other survivors to follow his example. “I think if you bottle everything up inside, it makes it more difficult to manage the situation,” Ethan explains. “So if you can, find a community or a friend or a stranger, someone you can share with and talk to about your feelings. I think you’ll find by sharing, it’ll make the process a lit­tle bit easier.”

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Is Parenthood Possible after Cancer Treatment?

by Joanne Frankel Kelvin, RN, MSN, AOCN

Many young people with cancer have not yet started or completed their families at the time of their diagnosis. If this describes you, and you are wondering if having children after cancer treatment is possible, the answer is yes. Many survivors will be able to conceive naturally, but for some it will be more complicated.

Cancer treatment can affect fertility in a number of ways. Surgery to resect a tumor may result in removal of or injury to reproductive structures. Some types of chemotherapy can destroy a woman’s eggs or impair sperm production in men. For men, sperm production may recover over time, sometimes years after chemotherapy treatment is completed. For women, however, even with resumption of monthly periods after treatment, loss of eggs may lead to early menopause and infertility at a young age. Radiation therapy can also destroy eggs and impair sperm production if the ovaries or testes are in the field of treatment. In addition, high-dose radiation to the pelvis may damage the uterus, leaving a woman physically unable to carry a pregnancy.

Not all survivors will develop these problems after treatment, however. The risk is based on your diagnosis, type and dose of treatment, age, and pretreatment fertility. To understand your personal risk, talk to your doctor.

If your fertility evaluation results indicate that it may be difficult for you to conceive naturally, you have a number of options to consider.

Most survivors are encouraged to wait at least one to two years after cancer treatment ends before attempting to conceive. Ask your doctor how long you should wait. A fertility evaluation at that time may indicate the likelihood you will be able to conceive naturally. A reproductive endocrinologist can check a woman’s hormone levels and use ultrasound to count the number of developing follicles (fluid-filled sacs, each containing a single egg) in the ovaries. Men can have a semen analysis, which reports on the number of sperm present, as well as their motility (ability to swim). If your results indicate that it may be difficult for you to conceive naturally, you have a number of options to consider.

Women may be able to have in vitro fertilization, or IVF. This involves hormone injections to stimulate the ovaries, retrieval of mature eggs, fertilization of the eggs with sperm, and transfer of the resulting embryos into the uterus several days later. Women who were able to freeze embryos or eggs before treatment can use these frozen embryos or eggs. These can be thawed (and fertilized if needed) and transferred into the uterus. Another option is to use donor eggs fertilized with your partner’s sperm to create embryos. For women who are unable to carry a pregnancy, embryos can be transferred to the uterus of a gestational carrier, or surrogate.

Some women who are fertile after treatment but are at risk for loss of fertility may not be ready yet to start a family. These women have the option of fertility preservation with IVF and freezing of eggs or embryos for future use.

Men who have no sperm in their semen but who were able to collect sperm before treatment can use their banked sperm. After thawing, your sperm are used to fertilize your partner’s eggs. IVF, as described above for women, is the most commonly used technique. Men who did not bank sperm can go to a reproductive urologist to consider testicular sperm extraction. This is a minor surgical procedure in which pieces of testicular tissue are removed to look for sperm that may be present in very small numbers. Another option is to use donor sperm to fertilize your partner’s eggs.

Adoption is another way to build a family after cancer. Having a history of cancer does not prevent you from being eligible to adopt as long as you are healthy and have been cancer free for a number of years.

If you have not yet started treatment for cancer and want to have a biologic child in the future, ask your doctor if you are at risk for infertility from your treatment and find out what options are available to preserve your fertility. Ask for a referral to a reproductive specialist if you want to know more.

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Staying Well Nourished through Cancer Treatment

by Jeannine B. Mills, MS, RD, CSO, LD

The nutritional well-being of cancer survivors can be significantly challenged by cancer treatment. Nutritional goals for most people facing cancer treatment include maintaining a healthy weight, optimizing calorie needs, minimizing vitamin and mineral deficiencies, and managing treatment-related side effects. Evidence shows that those who are able to maintain a healthy weight and optimize calorie intake during treatment will have an improved response to treatment, enhanced recovery, and a better quality of life.

Just as there are many different cancer-treatment strategies, so are there different recommendations for getting adequate nutrition during cancer. Nutritional goals vary according to cancer type, treatment, weight, age, and preexisting conditions, such as diabetes. Some cancer treatments cause more nutrition-related side effects than others. While some people are at higher risk for losing weight while on treatment, others may be at risk for weight gain. Moreover, cancer-related side effects, such as poor appetite, taste changes, nausea or vomiting, diarrhea or constipation, mouth sores, or discomfort with swallowing, can hinder you from getting the nutrition you need.

If your appetite has decreased, try eating small meals or snacks every two hours and drink calorie-rich liquids.

Poor Appetite
If you have a poor appetite, getting adequate nutrition can be especially challenging. Poor appetite may be a result of pain, fatigue, nausea, taste changes, alteration in bowels, or depression. Often, the anxiety associated with the cancer diagnosis itself can also affect your appetite. If your appetite has decreased, try eating small meals or snacks every two hours and drink calorie-rich liquids. Focus on condensed calories in smaller servings, such as cheese, dried fruit, nuts, avocados, bananas, full fat or two percent fat dairy products, pasta, dense breads, and pretzels. Try to avoid unnecessary diet restrictions, and cater to your taste preferences.

Taste Changes
Taste changes can occur even before cancer treatment begins. Foods may have less taste or no taste at all, or foods may have an unappealing flavor. Texture of foods and liquids may also lose their appeal. This can drive you to not want to eat at all. Cleansing your palate with a non-alcoholic mouth rinse or a baking soda and salt rinse before eating may be helpful.

Bitter and sour flavors may be more appealing when your sense of salt is enhanced or when your sense of sweet is diminished. Try different types of vinegar doused onto vegetables; chutney as a side to meat dishes; marinades for meat or vegetables; salsa added to meals; capers or olives added to salads; cilantro, fresh basil, or arugula added to a mix of salad greens; lemon squeezed onto vegetables or fish; citrus added to seltzer or water; and different fruit juices. Foods that are warm and moist may also be more appealing, as dry mouth may be to blame for your taste changes.

Nausea
With or without vomiting, nausea can be a significant barrier to eating. Medication to ease your nausea should be the first step in managing this side effect. Some foods may be better tolerated than others when nausea is a problem. For example, foods that are cool or room temperature may be easier to tolerate, as they don’t give off as strong an odor as warm or heated foods. You may also want to avoid overly sweet, fried, or spicy foods when you are experiencing nausea.

Constipation
Cancer treatment or medications given to manage treatment-related side effects, including pain medications and some anti-nausea medications, can cause constipation. Some medications, like narcotics, can slow the normal action of the stomach. Even if you’re consuming less food than usual, it’s important to continue to try to move your bowels daily or every other day to help avoid constipation.

Staying well hydrated is an important part of managing constipation. A high-fiber diet is often encouraged, and sometimes a daily laxative or stool softener is recommended, but you should first talk with your doctor to determine the best approach for you.

Maintaining a healthy weight, meeting your calorie and protein needs, avoiding micronutrient deficiencies, and managing treatment-related side effects are important components of your cancer care. Meeting these nutritional goals can help you respond and recover more completely from treatment and avoid treatment delays. For further guidance, see a registered dietitian.

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ASCO Issues Recommendations for Improving Cancer Survivor Care in the United States

Statement calls for improved federal policies, physician education, clinical guidelines and research to optimize care for the nation's cancer survivors

The American Society of Clinical Oncology (ASCO) has issued recommendations to help improve the quality of care for the more than 13 million cancer survivors living in the United States. ASCO's recommendations come at critical time when more people than ever before are surviving the disease as a result of advances in prevention, treatment and follow-up care.

Despite these important gains, cancer survivors still face a range of long-term challenges resulting from their disease and its treatment. Cancer survivors face an increased risk for other health problems, premature mortality and side effects from treatment. The transition from active treatment to post-treatment care is critical to optimal long-term health. If care is not planned and coordinated, cancer survivors are left without knowledge of their heightened risks and a follow-up plan of action.

"Most patients still want to see their oncologists even after they have finished active treatment. Oncologists are well positioned to lead and develop a strategy for coordinating follow-up care with primary care providers," said Sandra Swain, MD, FACP, ASCO president. "We can't let these patients, who are living examples of the progress we have achieved in cancer, fall through the cracks. ASCO's statement provides a roadmap for closing the gap in survivor care."

ASCO's statement, published today in the Journal of Clinical Oncology, outlines the components of cancer survivor care that should be prioritized by healthcare providers, patients, researchers and policymakers. The goal of this statement is to provide a framework to help ensure that the nation's cancer survivors receive the highest quality care possible, while addressing the unique needs and challenges faced by this population. 

"We can't let these patients, who are living examples of the progress we have achieved in cancer, fall through the cracks. ASCO's statement provides a roadmap for closing the gap in survivor care."

ASCO's Key Recommendations For Improving Survivor Care 

• Promote patient-centered coordinated care through the use of shared-care models, which allow for collaboration among practitioners of different disciplines or with different skills and knowledge;
• Increase adoption of quality improvement programs, such as ASCO's Quality Oncology Practice Initiative (QOPI®), which help physicians monitor and improve care for all survivors;
• Expand research on long-term and late effects to expand the evidence base required to define optimal survivor care;
• Strengthen education of healthcare providers on survivorship care to keep pace with growing evidence on the long-term follow-up care needs for different types of cancers;
• Educate and empower cancer survivors and their families to advocate for their unique needs and to ensure optimal long-term health. 

"Our recommendations apply well beyond the immediate oncology community. As many patients transition back to their primary care and other providers, it is imperative that all healthcare professionals collaborate to ensure optimal care," said Mary MCabe, RN, MA, Chair of ASCO's Survivorship Committee and Director of the Cancer Survivorship Initiative at Memorial Sloan-Kettering Cancer Center.

Implementation: ASCO's Activities and Policy Recommendations

ASCO is working to implement the recommendations of its statement by:

• Providing  educational sessions at its Annual Meeting and offering continuing medical education (CME) online;
• Developing quality measures for survivor care, including the use of treatment plans that can be shared among each survivor's healthcare providers (oncologists, primary care doctor, etc.);
• Developing clinical guidelines on long-term and late-effects often experienced by survivors, as well as on surveillance for cancer recurrence; and
• Disseminating accurate, easy to read information on its patient website, Cancer.Net.

ASCO is also exploring partnership opportunities with primary and family physicians to develop additional guidance on how these physician groups can work with oncologists to improve the care of cancer survivors.

In addition, ASCO is also calling upon policymakers to ensure that the needs of cancer survivors remain a priority as provisions of the Patient Protection and Affordable Care Act are implemented. Portions of the law, including those addressing Accountable Care Organizations (ACOs) and patient-centered medical homes, hold promise for our nation's cancer survivors as they are designed to promote coordinated care for patients with chronic diseases. ASCO is calling on federal lawmakers to include cancer as a chronic disease under these provisions and acknowledge the long-term and multi-faceted health issues facing survivors.

ASCO is also calling for reform of the Medicare reimbursement system in order to adequately reflect the delivery of survivor-specific services. The lack of coding and reimbursement policies that reflect the range of care services for services remains a major barrier to implemented of care coordination. ASCO believes the Comprehensive Cancer Care Improvement Act has the capacity to address this issue by creating a Medicare reimbursement structure for cancer care planning and the development of coordinated cancer care plans.

The number of cancer survivors in the United States is at an all-time high. Today, two out of three people live at least five years after a cancer diagnosis, up from roughly one out of two in the 1970s. It is estimated that over the next ten years, the number of cancer survivors in the United States will reach more than 18 million, underscoring the importance of our strengthening our nation's health care system capacity to address cancer survivor care.

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Cancer & the Flu

The 2012-2013 flu season is off to an early start. The flu vaccine is your best defense against seasonal flu. Everyone 6 months of age and older should get the flu vaccine.

What is the seasonal flu?
Seasonal flu is a contagious respiratory illness caused by flu viruses. It spreads between people and can cause mild to severe illness. In some cases, the flu can lead to death.

When is flu season?
In the United States, flu season occurs in the fall and winter. Seasonal flu activity usually peaks in January or February, but it can occur as early as October and as late as May.

How does seasonal flu spread?
Most experts believe that you get the flu when a person with the flu coughs, sneezes, or talks and droplets containing their germs land in your mouth or nose. You can also get the flu by touching a surface or object that has the flu virus on it and then touching your mouth, eyes, or nose.

Does having cancer put me at higher risk for getting the flu?
Being a cancer survivor does not put you at an increased risk for getting the flu. It does, however, put you at increased risk of complications from the flu virus. Complications include pneumonia, hospitalization, and even death.

If you have any flu-like symptoms, contact your healthcare provider immediately.

How can I protect myself from getting the flu?
Getting the flu vaccine is the most effective way to prevent the flu. The nasal spray flu vaccine is not safe for cancer survivors, so you should get a flu shot. Because you are at an increased risk of getting pneumonia, talk to your healthcare provider about the pneumococcal vaccine. The pneumococcal vaccine will protect you against pneumonia. You should also discuss the possibility of needing two pneumococcal vaccinations. In addition to getting vaccinated, follow these everyday steps to keep yourself healthy this flu season:

• Wash your hands often with soap and water or an alcohol-based hand rub.
• Avoid touching your eyes, nose, or mouth. Germs spread this way.
• Try to avoid close contact with sick people.
• Practice good health habits. Get plenty of sleep and exercise, manage your stress, drink plenty of fluids, and eat healthy food.
• Cover your nose and mouth with a tissue when you cough or sneeze, and throw the tissue in the trash after you use it.
• If you are sick with flu-like illness, stay home for at least 24 hours after your fever is gone without the use of fever-reducing medicine.

I think I have the flu. What should I do?
If you have any flu-like symptoms, contact your healthcare provider immediately. If you have the flu, stay at home and follow your doctor’s recommendations. Your doctor can prescribe antiviral medications that can make your symptoms less severe and make you feel better faster.

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Staying Positive after a Cancer Diagnosis

by Ann Webster, PhD

How am I going to cope with this?
My whole life has changed. Where do I find some hope? These are questions and statements I often hear from the survivors in my Mind Body Cancer Program. Cancer survivors face numerous challenges – physical, psychological, social, and spiritual. They also experience stress associated with treatment decisions and side effects. Maintaining optimism, resiliency, and strength is not always easy.

In my Mind Body program for cancer, I offer people with cancer self-care techniques that enable them to maximize their health and live more fully in mind, body, and spirit. These techniques, all proven effective by research, are incredibly simple.

Relaxation Response
The foundation of everything I teach is the “relaxation response,” a state of quiet in the mind and the body, which is the opposite of a stress response. It decreases activity in the sympathetic nervous system, reduces stress hormones, and changes chemistry in the brain. I teach a 20-minute relaxation exercise, and everyone receives my relaxation CD with instructions to listen to it daily. This helps create inner stillness. After a few weeks, the survivors in my program report they are less anxious and depressed, their sleep has improved, and they are happier and more alert.

Replace your negative thoughts with positive ones. When you change your mind, you change your mood.

Other relaxation techniques include yoga, mindfulness, diaphragmatic breathing, imagery, and self-hypnosis. I also encourage prayer. I suggest that people use these simple practices when they might be anxious, for example, during a biopsy, a CT scan, chemotherapy, radiation, or when waiting to see a doctor.

Attitude of Gratitude
To stay positive, keep an “attitude of gratitude” journal and write in it every day. When coping with cancer, it’s easy to forget that you have much to be grateful for. Keeping a gratitude journal is a good way to remind yourself.

As upsetting as cancer can be, it can also bring benefits. I often hear, Why did it take cancer to get me to “wake up?” Things that used to look vital no longer do, and other issues take on looming importance. People change careers, develop more intense relationships, and experience increased spirituality and altruism. Research calls this “benefit finding,” “resiliency,” or “vital engagement in life.” All create positive emotions.

Ask yourself these questions: What is most meaningful in my life now? Why am I here? What are the gifts I have to give? What is God’s will for me? Create quiet time, close your eyes, and reflect on how these questions apply to your life, career or education, relationships, creativity, play, health, spirituality, volunteering, and self-transformation. When you have answers, open your eyes and write them down. Then begin taking baby steps toward attaining your goals. Notice how great you feel when that happens.

News and Goods
Every day, do something new or good for yourself. This doesn’t have to be big or cost a lot of money. You might treat yourself to a delicious piece of dark chocolate, call a friend, take an aromatherapy bath instead of a quick shower, or walk in nature. These instantly perk up your spirits.

When dealing with cancer, and everything else life brings you, your mind becomes very busy. You might discover that you do a lot of jumping to conclusions, “fortune telling,” or “catastrophizing.” Perhaps you ruminate about the past. Your mind is not in the present. Your negative thoughts create negative feelings, and many of them are distorted, unhelpful, and not even true. Ask yourself, Is it really helping me to think this way? Replace your negative thoughts with positive ones. When you change your mind, you change your mood.

Laughter
Laugh more often. Spend time with people who make you laugh. Watch funny movies. Laughter has many health benefits, including boosting your immune system and releasing beta-endorphins (natural painkillers). And the benefits of laughter last way beyond the laugh.

Exercise
Stay fit. Find some form of exercise you like and can do several times a week, such as walking, yoga, Tai Chi, swimming, or a dance class. Exercise maintains stamina, bone health, muscle mass, and a healthy heart. Exercise also improves your mood.

It is my hope that in practicing some of these simple techniques, you will feel more peaceful, optimistic, and energetic. You may feel more connected to yourself and the world around you and discover a more inspired way of living.

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FDA Approves Iclusig to Treat Two Rare Types of Leukemia

Drug approved 3 months ahead of schedule

The U.S. Food and Drug Administration has approved Iclusig (ponatinib) to treat adults with chronic myeloid leukemia (CML) and Philadelphia chromosome positive acute lymphoblastic leukemia (Ph+ ALL), two rare blood and bone marrow diseases.

Iclusig is being approved more than three months ahead of the product’s prescription user fee goal date of March 27, 2013, the date the agency was scheduled to complete review of the drug application. The FDA reviewed the Iclusig drug application under the agency’s priority review program, which provides for an expedited six-month review for drugs that may provide safe and effective therapy when no satisfactory alternative therapy exists, or offer significant improvement compared to marketed products.

“Iclusig is the third drug approved to treat CML and the second drug approved to treat ALL this year, demonstrating FDA’s commitment to approving safe and effective drugs for patients with rare diseases.”

Iclusig blocks certain proteins that promote the development of cancerous cells. The drug is taken once a day to treat patients with chronic, accelerated, and blast phases of CML and Ph+ ALL whose leukemia is resistant or intolerant to a class of drugs called tyrosine kinase inhibitors (TKIs). Iclusig targets CML cells that have a particular mutation, known as T315I, which makes these cells resistant to currently approved TKIs.

“The approval of Iclusig is important because it provides a treatment option to patients with CML who are not responding to other drugs, particularly those with the T315I mutation who have had few therapeutic options,” said Richard Pazdur, MD, director of the Office of Hematology and Oncology Products in FDA’s Center for Drug Evaluation and Research. “Iclusig is the third drug approved to treat CML and the second drug approved to treat ALL this year, demonstrating FDA’s commitment to approving safe and effective drugs for patients with rare diseases.”

The FDA approved Bosulif (bosutinib) in September 2012 and Synribo (omacetaxine mepesuccinate) in October 2012 to treat various phases of CML. Marqibo (vincristine sulfate liposome injection) was approved in August 2012 to treat Philadelphia chromosome negative ALL.

Iclusig is being approved under the agency’s accelerated approval program, which provides patients earlier access to promising new drugs while the company conducts additional studies to confirm the drug’s clinical benefit and safe use. The therapy was granted an orphan product designation because it is intended to treat a rare disease or condition.

Iclusig’s safety and effectiveness were evaluated in a single clinical trial of 449 patients with various phases of CML and Ph+ ALL. All participants were treated with Iclusig.

The drug’s effectiveness was demonstrated by a reduction in the percentage of cells expressing the Philadelphia chromosome genetic mutation found in most CML patients, major cytogenetic response (MCyR). Fifty-four percent of all patients and 70 percent of patients with the T315I mutation achieved MCyR. The median duration of MCyR had not yet been reached at the time of analysis.

In accelerated and blast phase CML and Ph+ ALL, Iclusig’s effectiveness was determined by the number of patients who experienced a normalization of white blood cell counts or had no evidence of leukemia (major hematologic response or MaHR). Results showed:

• 52 percent of patients with accelerated phase CML experienced MaHR for a median duration of 9.5 months;
• 31 percent of patients with blast phase CML achieved MaHR for a median duration of 4.7 months; and
• 41 percent of patients with Ph+ ALL achieved MaHR for a median duration of 3.2 months.

Iclusig is being approved with a Boxed Warning alerting patients and health care professionals that the drug can cause blood clots and liver toxicity. The most common side effects reported during clinical trials include high blood pressure, rash, abdominal pain, fatigue, headache, dry skin, constipation, fever, joint pain, and nausea.

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Nurturing Your Spirit

by Walter V. Moczynski, DMin

Living with cancer can be challenging. But the cancer journey can also be a time to explore new ways to nurture your spirit and find inner peace, courage, meaning, community, hope, and a broader view of life. For many people, spirituality is an important part of coping that brings a sense of wholeness and well-being in the midst of illness.

Spirituality can mean many different things to different people. It can be viewed as something within us or around us, as a life force residing in a connection to others or found in all living things, or even as a transcendent being, such as God. We, ourselves, can be viewed as spiritual beings on a spiritual and physical journey. The beauty of spirituality is that regardless of the challenges we face and the coming and going of people in our lives, our spirit is always with us.

Creating sacred time and space allows you to quiet your mind and spirit. Your special time may be in the morning, at the end of the day, or even in the waiting room of a doctor’s office.

Spirituality is expressed in many ways. You might maintain a set of beliefs and practices of a particular religion, or you may view your spirituality as personal or secular, in conjunction with or apart from a religious community. Perhaps you are currently supported by your religious community, or maybe you have been away and are anxious about returning. Perhaps this area is new and you’ve never had a connection with a religion or a spiritual group, but now you are interested. Or you may be experiencing spiritual distress because of your illness and seeking ways to address it. Regardless of your situation, you can take action to tend to your spiritual needs.

Create sacred time and space.
With the many demands of life in our society, it is very difficult to schedule time for ourselves. Now add time needed for medical appointments, hospitalization, recovery, and other commitments, and the day disappears. You may also have the responsibility of caring for others. However, it is difficult to care for others if you don’t have time to care for yourself. On the other hand, you may find yourself with a great deal of time on your hands, and the days pass slowly.

Creating sacred time and space allows you to quiet your mind and spirit. Your special time may be in the morning, at the end of the day, or even in the waiting room of a doctor’s office. In fact, finding time to read this article is a good start. If quiet and stillness does not suit your personality, a walk, a swim, or a jog may define that sacred space for you.

In many religious and spiritual traditions, practices such as prayer and meditation are used to refocus and connect to spirituality. Whatever it is for you, find your sacred time and space, and begin to embrace life, family, and friends in a new light, set goals, and love yourself.

Discover meaningful signs and symbols.
It is helpful to have a tangible sign or symbol to represent your spirituality. It may be a sacred written word or phrase, a special object, a poem, a photo, a work of art, or a song lyric. Find one that reminds you of a sacred connection or that represents comfort, joy, and hope.

Explore spiritual resources.
It’s easy to feel alone on your cancer journey, even with many people around you. Reach out to foster relationships that are important to you. Find a friend, clergy person, or chaplain to share your journey with and to look to as a guide. Consider seeking out a spiritual community, such as a church, mosque, sangha, temple, or other place of worship, to deepen your spirituality and overcome feelings of isolation.

Discover sacred texts, inspirational stories, rites and rituals of worship, music, and journaling that connect with you. Be creative in order to nourish your spirit and expand your spiritual understanding. Most importantly, know that you are not alone. An eternal presence of hope and love is there for you, woven within many religious and spiritual traditions.

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Cancer from a Comedian’s Point of View

by John David Sidley

When I first found out I was going to get chemotherapy, I went out and got my head shaved, figuring I was going to beat them to the punch. Then I found out the drugs I was going to take didn’t have that side effect. Hey! Tell a guy!

That’s a joke. One of many I started writing and performing after I was diagnosed with stage IV colon cancer. Yeah, stage IV. When I heard that, I thought, Oh, that’s not so bad. It could be stage X. What? It only goes up to stage IV?

Another joke. You see, I’m a professional stand-up comic. For the past 20 years, I’ve performed at clubs and done one-nighters in various venues across Ohio, Pennsylvania, and West Virginia, all while keeping my day job. I’m also one of the cofounders of the Cleveland Comedy Festival. In fact, I was the first performer on stage at the very first festival. My family, friends, nurses, and doctors tell me that being funny has helped me survive these past three years. Maybe it has.

Is cancer funny? No. But we comics look at life from different angles. We’re seeing the same things you are, but with our heads cocked a little.

I’ve always found the funny in life and have shared it to make others laugh. After I got sick, I didn’t suddenly become funny. I just had a new topic – cancer.

Is cancer funny? No. But we comics look at life from different angles. Like a photographer who points his lens low or high or turns it upside down, we’re seeing the same things you are, but with our heads cocked a little.

During the first three or four months after I was diagnosed, I was absorbed in my sickness. Then I began to realize I was not going to die right away. I started thinking about performing again. I knew I had to develop an entirely new act. And I knew I had to deal with what was real – my cancer.

As the second annual Cleveland Comedy Festival rolled around, I set my goal to perform for 15 to 20 minutes. My wife and daughters packed my wheelchair in the trunk, and we drove downtown to the festival. I was introduced, got out of my wheelchair, and did my 15 to 20 minutes of comedy to an amazing response. Then I sat back down in the wheelchair – exhausted.

I’ve gotten stronger since then. I’ve replaced the wheelchair with a fancy cane. I’ve done a number of comedy shows, including two more Cleveland Comedy Festivals. I’ve written more jokes about my experience, and I’ve expanded my set. About once a year, I have a setback that puts me in the hospital. But during each visit, I fill a small notebook with jokes.

If your pain level is a 10, should anybody really have to ask?

Does looking at the funny side of sickness make you live longer? I don’t know. But it does make your life happier. What I do know is whenever I am introduced, as I step on the stage and the light hits me, I sit on the stool and adjust the mike, and I look out over the people sitting in the dark and start telling jokes and hearing their laughter, I feel no pain.

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Highlights of the 2012 Breast Cancer Symposium

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

New Device May Reduce Need for Follow-Up Surgery after Lumpectomy
A study has determined that the use of MarginProbe, a novel device that helps ensure that sufficient tissue is removed during a lumpectomy, results in fewer additional surgeries, without the cost of having to remove larger amounts of tissue. This could translate into reduced risks associated with follow-up surgeries and increased odds of preserving the cosmetic appearance of the breast after lumpectomy.

In current practice, it takes one or two weeks to obtain pathology results that indicate if sufficient tissue was removed in the first operation. MarginProbe may shorten this wait time to about five minutes, enabling detection of cancer at or near the surface of removed tumor tissue specimens while the person undergoing surgery is in the operating room. Consequently, the device reduces the risk of obtaining specimens with positive margins. This, in turn, leads to fewer people having to undergo repeat surgeries.

Study Refines Risk of Recurrence and Survival in Women with Node-Positive, ER-Positive Breast Cancer Treated with Chemotherapy
A retrospective study has shown that the recurrence score predicts favorable versus unfavorable outcomes after chemotherapy for women with estrogen receptor-positive breast cancer that has spread to axillary lymph nodes. The results of this study refine risk of recurrence and death in node-positive, ER-positive women who are treated with adjuvant chemotherapy plus hormonal therapy, and may help tailor the extent of adjuvant chemotherapy in these women.

Recurrence score has previously been reported to be prognostic of distant recurrence and survival outcomes for people with node-negative and node-positive disease treated with adjuvant hormonal therapy, as well as for people with up to three positive nodes treated with adjuvant endocrine therapy plus adjuvant chemotherapy. This study demonstrates that recurrence score is a significant predictor of favorable and unfavorable outcomes after adjuvant hormonal therapy plus chemotherapy in women with ER-positive breast cancer with any number of positive nodes.

“The number of positive nodes is a strong prognostic factor in breast cancer patients. The risk increases with more positive nodes. However, even within the nodal categories, the [recurrence score] further subdivides patients into distinct risk levels. So, it is an additional prognostic factor because it accounts for the biology of the disease,” says lead author Eleftherios P. Mamounas, MD, medical director of the Cancer Center at Aultman Hospital in Canton, OH.

Bone Scan, Liver Ultrasound, and Chest X-Ray Found Not Effective for Detection of Metastases in Early-Stage Breast Cancer
Analysis of pooled data from eight published studies revealed that bone scan, liver ultrasound, and chest X-ray very rarely detect metastases in women with newly diagnosed asymptomatic breast cancer. This finding raises concern over the routine use of these screening tests, particularly for stage I and stage II breast cancer, where metastases detection rates are lowest.

“Our literature analysis suggests that these three tests are of little use in screening women for metastases, and likely result in a lot of false negatives in early-stage disease. But a full picture would require a head-to-head comparison of these radiological tests with more sensitive imaging, such as CT or PET,” says study author Stuart-Allison Moffat Staley, MPH, a medical student at the University of North Carolina School of Medicine. While metastases detection rates were higher in women with stage III cancer, performing radiological tests may still be unnecessary if women are also assessed with more sensitive imaging.

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Novartis Oncology Announces Mobile Apps

My Net Manager and Clinical Trial Seek

Novartis Oncology has announced the launch of two new patient-oriented mobile phone apps to help patients better manage their health and allow them to more easily access and share important health information with their physician. My Net Manager is supported by six patient groups and Clinical Trial Seek is sourced from the National Institutes of Health (NIH).  

My NET Manager app offers patients with neuroendocrine tumors (NET) several tools that can help them organize information specific to their type of cancer. The tool allows patients to:

Clinical Trial Seek  helps patients and doctors quickly and easily search for cancer clinical trials sourced from the National Institutes of Health database (clinicaltrials.gov). The Clinical Trial Seek app features a flexible and extensive search that makes it easy for patients and healthcare professionals to find, navigate, and share in-depth clinical trial information, such as:

 Both apps are free and can be downloaded from iTunes® or the application store for your Android™ mobile device.

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Five Things to Put in Your Backpack When Going for Treatment in Cancerville

by William Penzer, PhD

It’s hard to find someone who hasn’t been touched by cancer. I was in just that position a few years ago when my daughter was diagnosed with breast cancer at age 31. While sitting in the waiting room of Memorial Sloan-Kettering Cancer Center in New York, I came to realize that cancer is not just a medical diagnosis; it’s also a place. My daughter, my wife, and I had just entered what I came to call Cancerville.

Having been to Cancerville by proxy, I understand more clearly what people need to take with them when dealing with cancer and its treatment. You need to pack a lot more than your medical ID, PJs, and a warm sweater. Here are five things to bring along to help strengthen your mind and your body.

A Positive Attitude
It can be difficult to maintain a hopeful, positive, and optimistic mindset when you are in Cancerville. It takes a great deal of work to push past the fears and worries, intrusive and debilitating treatments, fatigue, and disruption to just about every part of your life. You may falter, but what’s important is that you dust yourself off and get back up again.

Be creative in finding the right affirmations for you. Come up with some strong words of fight, like a cheerleader at the sidelines of a football game.

Positive mindsets come in a variety of personal styles. Seek out the ones that work for you, and put them in your backpack. If possible, draw from them the night before treatment to pump up your emotional muscles. The stronger you can approach Cancerville, the more you will be able to hold your own on its turf. Cancer is a formidable foe, but so are you!

Affirmations
Affirmations feed and stimulate your positive attitude. They are encouraging statements that you can repeat over and over in your mind. They help strengthen your resolve and help you stare back at cancer in an empowered way. Here are some examples:

• I can and will cope with my treatment today.
• I can manage the side effects of my treatment successfully.
• Today’s treatment will hurt my cancer cells more than it will hurt me.
• My doctors and I are fighting back strongly.
• I will move forward.
• I am a survivor.

Be creative in finding the right affirmations for you. Come up with some strong words of fight, like a cheerleader at the sidelines of a football game. Root, root, root for your home team, which in this case is you.

Relaxing Resources
We all differ in what we find relaxing. Some people enjoy listening to music or reading poetry, while others prefer to read biblical passages or listen to podcast sermons. Some people find relaxation exercises helpful, while others prefer to watch movies.

What about people who find exercise, jogging, or rollerblading calming? Though it is not likely that you can do vigorous exercises in the corridors of your treatment center, you can visualize yourself doing activities that you enjoy. Just close your eyes and picture yourself being active. You can do the same with good memories you have recorded in your mind.

Distractions
Some cancer treatments – not to mention the waiting – can take a long time. Pack enjoyable distractions to engage your mind. These may include crossword puzzles, knitting or needlepoint projects, light-hearted or funny books, soothing music, movies, a newspaper or magazine, a sketchbook, or your laptop or tablet. The more you can distract yourself, the better you will feel.

A Cheerleader
You may need a larger backpack for this one. If you can, bring a warm, upbeat, supportive cheerleader with you. For most people, nothing helps as much as human kindness and interaction during tough times. If such a person is available, see if he or she will come along with you to treatments.

However, it’s OK if no one fits the bill. You can be your own cheerleader. Just relax and try to maintain an affirming and positive mindset. Others seeking treatment alongside you can be helpful as well, as they can relate to what you’re going through. If you tend to be the shy, quiet type, try to reach out and talk to others. You never know where your next source of inspiration might come from.

When heading for treatment in Cancerville, pack as much support as you can. A positive mindset and affirmations can empower your fight, while relaxation techniques and distractions can take your mind off the Cancerville scene. Together, these tools will help keep your mind strong while fortifying your body to take on cancer.

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Cancer Pain Management Myths

by Rob Yates, MPAS, PA-C

Once you hear your doctor say, “I’m sorry, but you have cancer,” your life is changed forever. With that diagnosis, a number of fears immediately surface. One of the most feared symptoms of cancer and its treatment is pain. Here are six common myths about cancer-related pain.

Myth #1 “Being diagnosed with cancer means that I will suffer in pain.”
While you may experience pain at some point, not everyone who has cancer has pain that limits their daily activities. Many effective treatments for pain are available to keep you from living in severe pain. These include pills, patches, intravenous injections, and procedures such as epidural and intrathecal catheters and nerve blocks.

Myth #2 “If I take strong pain medications, I will become addicted.”
The risk of becoming addicted to opioid (narcotic) pain medications is the same as it was before cancer. If taken for pain as prescribed by your physician, the risk of addiction to pain medications is low.

The goal is to keep your pain within the “therapeutic window.” Inside this window, your pain is usually mild, and you are able to do your daily activities without the pain stopping you.

Myth #3 “If I take pain medications now, they will not work for me later.”
A natural response to taking opioid medications is that our bodies develop tolerance. This means that a dosage adjustment may be necessary in order to get the same pain relief. This is entirely normal and is not a reason to live in pain.

Myth #4 “I expect my pain to be completely taken away.”
It would be ideal to have your pain go away altogether, yet for pain that has been around for more than a few weeks, it may not be realistic. The goal is to keep your pain within the “therapeutic window.” Inside this window, your pain is usually mild, and you are able to do your daily activities without the pain stopping you.

Too often, we wait until after the pain has become severe to take our pain medication. Subsequently, it takes longer and more medication to bring the pain back under control. I recommend what I call the “John Wayne Technique of Pain Management” – you head the pain off at the pass, pard’ner! In John Wayne’s western movies, once the bad guys get away, it takes John the entire movie to get them behind bars. Pain is very similar in that if you wait until it gets away from you, then it may take several hours and more medication for the pain to improve. However, you can head it off at the pass by taking your pain medication before it becomes severe and by taking it prior to doing any activity that may stir up your pain.

Myth #5 “If I complain about my pain, my doctor will think I’m not a good patient, or I won’t be allowed to receive my cancer treatment.”
It is very important to keep all your symptoms under control, including pain. In order to help you, your doctors need to know about the pain you are experiencing. Uncontrolled pain can mean an unpleasant trip to the emergency room and a hospital stay. This certainly could delay any treatment for your cancer.

Myth #6 “Strong pain medications will have unpleasant side effects.”
The most common side effects from opioid medications are drowsiness, nausea, and constipation. Drowsiness goes away in a few days, and nausea and constipation can be managed with treatment.

If you have more medication in your body than what is required for your pain, this can be referred to as “above the therapeutic window.” The extra opioid medication has no pain to treat, thus it acts like a little boy with nothing to do. The extra medication can cause “mischief,” such as involuntary muscle jerking, drowsiness, confusion, hallucinations, or slowed breathing. Therefore, it is important to communicate with your doctor how well your pain is (or is not) being managed.

There is no need to fear cancer pain. It can be managed with the many different treatments available today.

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Your Guide to Lung Cancer Treatment

There are four basic ways to treat lung cancer: surgery, radiation therapy, chemotherapy, and targeted therapy. Your treatment will depend on several factors, including the type and stage of your cancer, possible side effects, and your preferences and overall health. In addition to these standard therapy options, you may also want to consider taking part in a clinical trial.

Surgery
A surgical oncologist is a doctor who specializes in treating cancer using surgery. For lung cancer, a thoracic surgeon is specially trained to perform lung cancer surgery. The goal of surgery is the complete removal of the lung tumor and the nearby lymph nodes in the chest. The tumor must be removed with a surrounding border of normal lung tissue (called the margin). A “negative margin” means that when the pathologist examines the lung, or piece of lung that has been removed by the surgeon, no traces of cancer were found in the healthy tissue surrounding the tumor.

The following types of surgery may be used for lung cancer:

• Lobectomy The lungs have five lobes, three in the right lung and two in the left lung. For non-small cell lung cancer, a lobectomy (removal of an entire lobe of the lung) has been shown to be the most effective type of surgery, even when the lung tumor is very small.
• A wedge If the surgeon cannot remove an entire lobe of the lung, the surgeon can remove the tumor, surrounded by a margin of normal lung.
• Pneumonectomy If the tumor is close to the center of the chest, the surgeon may have to remove the entire lung.
• Radiofrequency ablation This is the use of a needle inserted into the tumor to destroy the cancer with an electrical current. It is sometimes used for a lung tumor that cannot be removed with the other types of surgery listed.

The time it takes to recover from lung surgery depends on how much of the lung is removed, as well as your health before surgery. Talk with your healthcare team about what to expect before your surgery, including recovery time and possible side effects.

Before treatment begins, talk with your healthcare team about the possible side effects of your treatment plan and supportive care options.

Adjuvant Therapy
Adjuvant therapy is treatment that is given after surgery to lower the risk of the lung cancer returning. Adjuvant therapy includes radiation therapy, chemotherapy, and possibly targeted therapy. It is intended to get rid of any lung cancer cells that may still be in the body after surgery. It may decrease the risk of recurrence, though there is always some risk that the cancer will come back.

Radiation Therapy
Radiation therapy is the use of high energy X-rays or other particles to kill cancer cells. The most common type of radiation treatment is called external-beam radiation therapy, which is radiation given from a machine outside the body. When radiation treatment is given using implants, it is called internal radiation therapy or brachytherapy. A radiation therapy regimen usually consists of a specific number of treatments given over a set period.

Like surgery, radiation therapy cannot be used to treat widespread cancer. Radiation only kills cancer cells directly in the path of the radiation beam. It also damages the normal cells in its path; for this reason, it cannot be used to treat large areas of the body.

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

Chemotherapy has been shown to improve both the length and quality of life for people with lung cancer of all stages.

Chemotherapy may also damage normal cells in the body, including blood cells, skin cells, and nerve cells. This may cause low blood counts, an increased risk of infection, hair loss, mouth sores, and numbness or tingling in the hands and feet. Your doctor can often prescribe drugs to help relieve many of these side effects. Hormone injections are also used to prevent white and red blood cell counts from becoming too low.

Newer chemotherapy treatment plans cause fewer side effects and are as effective as older treatments. Chemotherapy u has been shown to improve both the length and quality of life for people with lung cancer of all stages.

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

Recent studies show that not all tumors have the same targets. To find the most effective treatment, your doctor may run tests to identify the genes, proteins, and other factors in your tumor. For some lung cancers, abnormal proteins are found in unusually large amounts in the cancer cells. Running tests to find these proteins can help doctors better match you with the most effective treatment whenever possible. In addition, many research studies are taking place now to find out more about specific molecular targets and new treatments directed at them.

For lung cancer, the following types of targeted therapy may be used, particularly in clinical trials.

• Anti-angiogenesis therapy This type therapy is focused on stopping angiogenesis, which is the process of making new blood vessels. Because a tumor needs the nutrients delivered by blood vessels to grow and spread, the goal of anti-angiogenesis therapies is to “starve” the tumor. Bevacizumab (Avastin®) is an anti-angiogenic drug given along with chemotherapy for lung cancer.
• Epidermal growth factor receptor (EGFR) inhibitors Researchers have found that drugs that block EGFR may be effective in stopping or slowing the growth of lung cancer.

Cetuximab (Erbitux®) is an EGFR inhibitor given along with chemotherapy to treat lung cancer, especially when treatment with bevacizumab is not recommended. However, the drug has not yet been approved by the U.S. Food and Drug Administration to treat lung cancer, as research continues, so access to this drug may be through clinical trials.

Erlotinib (Tarceva®) is another drug that blocks EGFR. This drug has been shown to work better than chemotherapy if the lung cancer has a mutation in the EGFR gene. It is approved by the FDA for people with locally advanced and metastatic non-small cell lung cancer and as a maintenance therapy for people with non-small cell lung cancer that has not grown or spread after at least four cycles of chemotherapy.

Gefitinib (Iressa™) is another drug that blocks EGFR. In the United States, it is available only to people who were already taking it, have taken it in the past and had a good effect, or as part of a clinical trial.

Another type of targeted therapy recently approved by the FDA for advanced non-small cell lung cancer is crizotinib (Xalkori®). Crizotinib targets a gene called ALK, which drives lung cancer growth when it is mutated.

Palliative Care
Cancer and its treatment often cause side effects. In addition to treatment to slow, stop, or eliminate the cancer, an important part of cancer care is relieving a person’s symptoms and side effects. This approach is called palliative or supportive care, and it includes supporting you with your physical, emotional, and social needs.

Palliative care can help a person at any stage of illness. People often receive treatment for the cancer and treatment to ease side effects at the same time. In fact, people who receive both often have less severe symptoms, better quality of life, and report they are more satisfied with treatment.

The following treatments may be given to help relieve the symptoms of lung cancer:

• A tumor in the chest that is bleeding or blocking the lung passages can be shrunk with radiation therapy.
• During a bronchoscopy, lung passages blocked by cancer can be opened to improve breathing.
• A surgeon can use a laser to burn away a tumor or place a stent to prop open an airway.
• Medications are used to treat cancer pain. Most hospitals and cancer centers have pain control specialists who provide pain relief, even for very severe cancer pain. Many drugs used to treat cancer pain, especially morphine, can also relieve shortness of breath caused by cancer.
• Medications can be used to suppress cough, open closed airways, or reduce bronchial secretions.
• Prednisone or methylprednisolone can reduce inflammation caused by lung cancer or radiation therapy and improve breathing.
• Extra oxygen from small, portable tanks can help make up for the lung’s reduced ability to extract oxygen from the air.
• Medications called bisphosphonates strengthen bones, lessen bone pain, and help prevent future bone metastases.
• Appetite stimulants and nutritional supplements can improve appetite and reduce weight loss.

Before treatment begins, talk with your healthcare team about the possible side effects of your specific treatment plan and supportive care options. And during and after treatment, be sure to tell your doctor or another healthcare team member if you are experiencing a problem, so it is addressed as quickly as possible.

Combining Treatments
Most people with lung cancer receive more than one type of treatment from more than one specialist. This is called a multidisciplinary team approach. For example, chemotherapy can be given before or after surgery or before, during, or after radiation therapy. You should have a sense that your doctors have a coordinated plan of care and are communicating effectively with one another. If you do not feel that the surgeon, radiation oncologist, or medical oncologist is communicating effectively with you or each other about the goals of treatment and the plan of care, you should discuss this with your doctors or seek additional opinions before treatment.

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Healthy for the Holidays

by Karen Syrjala, PhD

Surviving the holidays with one’s waistline, bank account, and sanity intact can be challenging for everyone, but the season affords specific issues for cancer survivors who are mindful of staying healthy throughout the season and beyond. Here are some tips to help survivors have a healthier holiday season 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? For example, if you have to see a difficult relative, arrange to do something fun afterward. This way, you can remind yourself that in a few hours you’ll be doing something that you enjoy.

Are there holiday traditions or events 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 to time spent connecting with those we are close to; consider this important for your health during the holidays.

Keep moving.
Physical activity can benefit your health any time of year. It is certain to make you feel good and help your body and brain 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. Check with your local gym to see if they have a program for cancer survivors. Always consult with your doctor before beginning an exercise routine.

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 to avoid certain foods. Eat sweets in moderation, and make sure you also get protein, fiber, and healthful fats. Eat healthy food before going to a party so 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 choose to drink, do so in moderation (one drink a day for women and two for men).

Relax your body and mind.
When you are more relaxed you can 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.

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; or 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 follow-up care.
Schedule an appointment to go over your survivorship needs if you aren’t sure about your risks for long-term problems or what symptoms you should watch for to maintain your health. Tap into a survivorship program to help you detail a survivorship 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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FDA Expands Zytiga’s Use for Late-stage Prostate Cancer

Drug can now be used before treatment with chemotherapy

The U.S. Food and Drug Administration has expanded the approved use of Zytiga® (abiraterone acetate) to treat men with late-stage (metastatic) castration-resistant prostate cancer prior to receiving chemotherapy. Zytiga (abiraterone acetate) is a prescription medicine that is used along with prednisone.

The FDA initially approved Zytiga in April 2011 for use in patients whose prostate cancer progressed after treatment with docetaxel, a chemotherapy drug. Zytiga is a pill that decreases the production of male sex hormone testosterone.

In prostate cancer, testosterone stimulates prostate tumors to grow. Drugs or surgery are used to reduce testosterone production or to block testosterone’s effects. Some men have castration-resistant prostate cancer, meaning the prostate cancer cells continue to grow even with low levels of testosterone.

“Today’s approval demonstrates the benefit of further evaluating a drug in an earlier disease setting and provides patients and health care providers the option of using Zytiga earlier in the course of treatment,” said Richard Pazdur, MD, director of the Office of Oncology Drug Products in the FDA’s Center for Drug Evaluation and Research.

The FDA reviewed Zytiga’s application for this new indication under the agency’s priority review program. The program provides for an expedited six-month review for drugs that may offer major advances in treatment or provide a treatment when no adequate therapy exists.

Zytiga’s safety and effectiveness for its expanded use were established in a clinical study of 1,088 men with late-stage, castration-resistant prostate cancer who had not previously received chemotherapy. Participants received either Zytiga or a placebo (sugar pill) in combination with prednisone.

“Today’s approval demonstrates the benefit of further evaluating a drug in an earlier disease setting and provides patients and health care providers the option of using Zytiga earlier in the course of treatment.”

The study was designed to measure the length of time a patient's overall survival and the length of time a patient lived without further tumor growth as assessed by imaging studies (radiographic progression-free survival, or rPFS).

Patients who received Zytiga had a median overall survival of 35.3 months compared with 30.1 months for those receiving the placebo. Study results also showed Zytiga improved rPFS. The median rPFS was 8.3 months in the placebo group and had not yet been reached for patients treated with Zytiga at the time of analysis.

The most common side effects reported in those receiving Zytiga include fatigue, joint swelling or discomfort, swelling caused by fluid retention, hot flush, diarrhea, vomiting, cough, high blood pressure, shortness of breath, urinary tract infection, and bruising.

The most common laboratory abnormalities included low red blood cell count; high levels of the enzyme alkaline phosphatase, which can be a sign of other serious medical problems; high levels of fatty acids, sugar, and liver enzymes in the blood; and low levels of lymphocytes, phosphorous and potassium in the blood.

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Life after Cancer

Coping with the Fear of Recurrence

by Fran Zandstra, RN, MBA, OCN

In the midst of cancer treatment, for most, the goal is to cure the cancer. This means finishing the prescribed treatment plan, whether it’s surgery, chemotherapy, radiation, or some combination of the three. You count the months and days until you reach that milestone. When the day finally arrives, you are elated and ready to put the experience behind you. Your doctor and healthcare team congratulate you with a pat on the back, a warm hug, and a fond farewell. This is the day you and your loved ones have been looking forward to – treatment is over. Let the celebration begin!

Then it hits you – what now? Cancer survivors often say that life has new meaning or that they look at things differently after cancer. When treatment ends, you may expect life to return to the way it was before you were diagnosed. However, it can take time to recover both physically and emotionally. You may not be able to do some things you once did easily. And you may have emotions that surprise you, such as feelings of fear or anxiety. One of the most common emotions after treatment is the fear that cancer will recur.

While you can’t control whether cancer recurs, you can control how much you let the fear of recurrence affect your life.

Researchers have studied the relationship between emotions and cancer extensively. While there is no evidence that emotions can cause or prevent cancer, research does show that taking an active role in your care can improve both your physical and mental sense of well-being. It’s important to remember that while you can’t control whether cancer recurs, you can control how much you let the fear of recurrence affect your life.

A first step in coping with fear is to try not to feel guilty for being afraid or ignore your feelings in hopes that they’ll go away. Instead, here are more productive ways to cope with the fear of cancer recurrence.

♦ Talk about your feelings.
Talking often reduces fears and anxieties. Talk with your healthcare team or friends, or join a support group. Connecting with others who are experiencing similar feelings can be a great comfort. Ask your healthcare team about support groups offered by your hospital or other organizations in your community.

♦ Write down your thoughts and feelings in a journal.
Research has shown that journaling may help people experience a greater sense of physical and emotional well-being. Because journal writing helps you to focus on your innermost thoughts, it fosters coming to terms with illness and regaining a sense of control in your life.

♦ Exercise regularly, and try other complementary therapies.
Reputable centers all across the country offer classes in exercise and complementary therapies, such as yoga, music therapy, tai chi, guided imagery, reflexology, and massage. Prayer and meditation can also be helpful.

♦ Stay informed about your ongoing healthcare needs.
Ask your doctor for a treatment summary. This should include a schedule of recommended follow-up visits, medical tests, cancer screenings, symptoms to report, and, specifically, who will be providing your care. Keep a schedule of your appointments.

Don’t feel you need to do everything at once. Try those things that bring you joy or help you feel peaceful. Life after cancer is a journey. Be gentle and have patience with yourself as you heal physically and emotionally. For most cancer survivors, fear of recurrence recedes with time.

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Prostate Cancer Affects Women, Too

Learning How to Thrive after the Man You Love Is Diagnosed

by Cindie Hubiak

Our society considers prostate cancer solely a man’s disease. It’s not. Prostate cancer can affect women physically, emotionally, and spiritually. To complicate matters further, many men don’t want anyone to know about their diagnosis and treatment. This vow of silence reduces potential resources for women, pushing the topic under a rug, causing many of us to feel suffocated and isolated.

That’s how it was for me five years ago when the man in my life had his prostate removed after a diagnosis of cancer. I couldn’t find resources to assist me with my experience, especially since he asked me to keep his cancer confidential. Most of the information I found addressed the medical aspects of prostate cancer for men. I found a few resources directed at the couples’ experience, but nothing addressed my situation.

Thus, I embarked on a personal journey to find solutions. Before this, I felt depressed, my relationship was in trouble, and I lived life just surviving. What I learned on my journey helped me begin to thrive. And I want to share those lessons with you, to help you gain more passion and joy in your life, and to help you thrive after prostate cancer.

Take this opportunity to learn everything you can about prostate cancer, about yourself, and about your partner.

1 Banish Fear with Knowledge
Take this opportunity to learn everything you can about prostate cancer, about yourself, and about your partner. Invest in counseling, read, and take classes. Find solutions that work for your life and your specific situation.

2 Live in the Moment
Focusing on my breathing keeps me from revisiting the past and worrying about the future. Neither of these activities results in a good use of my time. Too often after the diagnosis, I found myself angry about how prostate cancer had changed my life. I lived in fear of what the future might bring, which caused me to use my energy in ways that served neither me nor my partner. When I brought myself into the present, I found ways to cope with life.

3 Grieve Your Losses
Any time something changes, loss occurs. When there’s loss, there’s a need to grieve. Learn about the five common stages of grief: denial, anger, bargaining, depression, and acceptance. Find ways to cope with your own grief. And learn how to assist your man while he is grieving so you both can heal completely.

4 Devote Time to Intimacy
This means intimacy with yourself and with your partner. I like to define intimacy as “into me see.” The better I know myself physically, emotionally, and spiritually, the more intimate I can be with others. Have the sex talk with your partner, telling him what you enjoy about sex. Begin to look at sex in a whole new way – expand your definition beyond sexual intercourse. Make sure to schedule time for physical intimacy. Spontaneity is great, but it often doesn’t happen in our busy world, especially after prostate cancer. With these practices, I found sex to be much more fulfilling after prostate cancer than it was before.

5 Dream, Believe, and Achieve
Describe the life of your dreams on paper, to a friend, or to your partner. Be clear on what brings you happiness. Truly believe you can achieve your dreams, and watch them unfold one at a time. When I tell people that prostate cancer affected my life in wondrous ways, it takes a bit of explaining for them to understand. My experience with prostate cancer gave me an opportunity to get to know myself better and change what didn’t work for me. Rather than focusing on how to fix my partner and our relationship, I placed my attention on the only thing in my control: me. Today, I don’t live just to survive. I live a thriving life despite my experience with prostate cancer – or maybe because of it. I believe you can, too.

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You’ve Beaten Childhood Cancer

Now it’s time to get serious about follow-up care.

by Nancy Keene, Wendy Hobbie, MSN, PNP, FAAN,
and Kathy Ruccione, RN, MPH, CPON, FAAN

Every year, on the first Sunday in June, treatment centers across the country organize special events for National Cancer Survivors Day® with games, entertainment, and refreshments. At some events, college scholarships are awarded. Maybe there is a friendly softball competition between survivors and staff, or the doctors agree to take a turn in a dunk tank, good-naturedly letting themselves be dunked by kids and teens. Sometimes educational materials are distributed or inspirational lectures given. Always, there is a chance to renew the bonds forged by shared experience and to reconnect with staff members on a relaxing and fun day.

Survivors of childhood cancer certainly have much to celebrate. The combined five-year survival for childhood cancers has improved from less than 50 percent before the 1970s to 80 percent today. Treatment for childhood cancer is one of the miracles of modern medicine.

Along with the joyous celebrations, however, is a need to get accurate information and excellent follow-up care. The surgery, radiation, chemotherapy, and stem cell transplants used to cure children and teens often affect growing bodies and developing minds. About two-thirds of all childhood cancer survivors develop medical late effects from treatment, and approximately 25 percent of survivors have serious or life-threatening late effects.

Good health habits and appropriate medical care can help childhood cancer survivors make the most of the lives that they fought so hard to save.

Risks for late effects depend on many factors, including the type of disease, age at diagnosis, and treatments used. The following are examples of late effects after cure from childhood cancer:

• Breast cancer at an early age in survivors of Hodgkin lymphoma who received radiation to their chest when they were teenagers
• Heart disease after treatment with chemotherapy (doxorubicin, for example) or high-dose chest radiation
• Learning disabilities from radiation or chemotherapy to the brain
• Infertility following chemotherapy or radiation to the abdomen
• Hearing loss from the chemotherapy drug cisplatin
• Symptoms of post-traumatic stress in survivors and their parents

Fortunately, good health habits and appropriate medical care can help childhood cancer survivors make the most of the lives that they fought so hard to save. Here are several ways you can be checked for late effects and get advice on how to remain healthy.

Find a knowledgeable healthcare provider.
The best way to get optimal care is to see a multidisciplinary team at a major medical center on a regular basis. These follow-up programs usually provide a review of treatments received, counseling about potential health risks, and any necessary diagnostic tests, such as cardiac evaluation, hormonal studies, psychological evaluation, or testing for learning disabilities. In some cases, members of the follow-up team act as advocates for survivors with schools, insurance agencies, and employers. The focus of these programs is to educate survivors on strategies to maximize their health and well-being.

However, sometimes circumstances prevent survivors from participating in a follow-up program. For example, you may not live near a survivorship program or be able to travel to one. In addition, although a few programs follow survivors into their adult years, most do not see survivors after they finish high school. For these reasons, adult survivors often have to search for a primary care provider (family physician, internist, or nurse practitioner) who is interested in caring for survivors of childhood cancer.

You may need to make a few phone calls or visit with several healthcare providers until you find someone you are comfortable seeing. Because most primary care providers have not taken care of many childhood cancer survivors, the provider should be willing to communicate with doctors involved with a comprehensive follow-up program and remain up-to-date on the newest research and screening recommendations.

Get a copy of your medical records.
Every survivor should have a medical summary that includes their type of cancer, treatments received, and follow-up tests needed. Many cancer centers and follow-up programs give survivors a medical summary after treatment is completed. you should call the hospital where you were treated and request one. The treatment summary should be kept in a safe place, and a copy should be given to each of your healthcare providers.

It is also a good idea to obtain copies of pertinent X-rays, scans, and procedure reports from your cancer treatment (these are now usually provided on CDs). Hospitals and clinics may not keep these records indefinitely, or they may be put in storage and be difficult to track down later. You may be charged for these copies, but it is well worth the price for the peace of mind that comes from having your own set of records. If you develop any late effects from treatment, these early records will be crucial for your healthcare provider to review.

Advocate for your medical needs.
The more informed you are about your treatment, the better you can advocate for appropriate care. For instance, if you know that you are at risk for breast cancer, you can ask your healthcare provider for a referral for a mammogram eight years after you had chest radiation. Most primary care providers do not know that survivors of Hodgkin lymphoma usually need to start getting yearly mammograms in their 20s.

Make good choices.
You have power over many parts of your future, including making choices that have a positive effect on your health. For instance, many late effects can be avoided or minimized by eating a healthy diet, being physically active, and choosing not to smoke.

You can also improve your health by giving yourself the gift of good information and support. For example, some follow-up programs offer support groups designed to meet the unique needs of childhood cancer survivors. Some survivors enjoy participating in online discussion groups or finding and using helpful books and websites. Learning what you need to know and partnering with knowledgeable professionals will help you make the most of your life after cancer.

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When Treatment Ends

Focusing on Your Emotional Recovery from Cancer

by Jolene Rowe, LCSW

For many cancer survivors, the challenges of a cancer diagnosis don’t end with treatment. Emotional recovery is sometimes a longer and even more difficult process than physical recovery. This can be exacerbated by the expectation from family, friends, and coworkers that the day treatment ends will be the day you are back to normal. As a cancer survivor, you know this is far from the truth.

Coupled with the joy and relief of completing treatment, you may experience fear of recurrence, worries about long-term effects of treatment, and a general uncertainty about the future. You may feel sad or even develop depression. Many changes and losses have occurred, and with loss comes the need to grieve in order to move on.

Whatever your unique experience, all survivors share a common desire to return to normalcy. They want a “prescription” to feel less like cancer patients and more like themselves again.

The first step is acknowledging and accepting your new normal. It’s OK to not feel like yourself after treatment. It’s OK to never be the same again. You need time to recover and regain your emotional equilibrium. Give that to yourself without guilt. Allow yourself time to reflect on your experience, take stock of how cancer has affected your life, and reevaluate how you view the world. Putting cancer in perspective and attaching some meaning to what you have been through can enhance your sense of control over your life, as well as your sense of well-being as a survivor.

Be kind to yourself, allow time for healing, and allow those around you to support you in this endeavor.

Cancer is a transformative experience that may cause you to question and rethink your priorities. It’s a time of transition and, like any transition, requires adjustments. Let go of what is unnecessary and focus on what is most important; it can be both empowering and liberating. Cancer has a way of helping you redefine your priorities and recognize what you value most.

Try to deal with the expectations, behaviors, and emotions of others in a way that does not cause you distress. Don’t feel as if you have to live up to everyone’s expectations, but do try to have compassion for those close to you who may be uncertain of what to say or how to act now that your treatment is over. Seek out the company and support of the people in your life who have been understanding, helpful, and comforting. Learn to ask for what you need and to communicate honestly, clearly, and assertively what you do not. Anticipate questions about your illness while choosing what you wish to share about your experience.

Be proactive in setting your new priorities as a survivor. Decide how or if you plan to return to work, school, and social activities, and determine when the time is right for you. Find ways to comfort yourself, relieve stress, and cope with the fear of recurrence. Learn what the late effects of treatment are, what to expect from them, and how to manage them. Knowledge can help reduce your anxiety.

Seek out other survivors who share a common experience to reduce the sense of isolation that comes from being a cancer survivor reentering life. Explore mind-body strategies and other wellness activities. If you are a spiritual person, seek comfort in those activities that nourish your spirit. Find things that make you happy, and pursue them.

As you embark on this phase of your recovery, with the tasks and challenges that lie ahead, find ways to be hopeful. Get involved in life. Enter new relationships and experience new things. Make plans for the future. Try to think less about what could happen and more about what needs to happen. Accept help and support when needed. If you find that over time and with attention you don’t feel better, seek out help from a mental health professional. Just as you wouldn’t ignore a physical symptom that doesn’t go away, don’t ignore ongoing distress that doesn’t go away despite your best efforts.

Commit to your own emotional recovery. Be kind to yourself, allow time for healing, and allow those around you to support you in this endeavor.

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American Society of Clinical Oncology Issues Annual Report on State of Clinical Cancer Science

Report Highlights the Year’s Most Significant Developments in Research, Policy

The American Society of Clinical Oncology (ASCO) has released its annual report on the top cancer advances of the year. Clinical Cancer Advances 2012: ASCO’s Annual Report on Progress Against Cancer highlights major achievements in precision medicine, cancer screening and overcoming treatment resistance.

“Consistent, significant achievements are being made in oncology care with novel therapeutics, even in malignancies that have previously had few treatment options, as well as defining factors that will predict for response to treatment. ASCO’s report distills the most significant of these advances that are impacting the lives of cancer patients today,” said Bruce Roth, MD, Co-Executive Editor of the report.”

Many of the top clinical research advances of 2012 involve therapeutic approaches that stem from our growing understanding of the complex biology of cancer, which enables development of targeted drugs and treatments tailored to molecular characteristics of individual patients and their tumors. This research has led to seven new FDA approvals for anticancer agents in 2012, some of which will help patients with treatment-resistant forms of cancer.

The large number of advances featured in this year’s report showcase the payoff of national investment in clinical cancer research on prevention, screening, survival and quality of life for patients with cancer.

The top cancer advances from this year include:

• Two new therapies which delay progression of advanced breast cancer –
  1. One study found adding targeted therapy to hormonal therapy delays disease progression in postmenopausal women with advanced hormone receptor-positive breast cancer
  2. Another advance was an armed antibody or “smart bomb” approach called TDM-1 to selectively deliver medicine to HER2-positive breast cancer cells, leaving healthy cells alone.
• Research finding that pre-operative chemotherapy and radiation improves survival for patients with esophageal cancer
• A study showing screening with flexible sigmoidoscopy reduces colorectal cancer incidence and death rates
• Research showing a new targeted treatment extends survival for patients with advanced prostate cancer

The large number of advances featured in this year’s report showcase the payoff of national investment in clinical cancer research on prevention, screening, survival and quality of life for patients with cancer. The report, now in its eighth year, features 87 studies, 17 of which were designated as major advances by the report’s 21-person editorial board.

This year’s report also contains “The Policy Environment: ASCO in Action in 2012” section, which outlines some of the key cancer policy issues facing physicians and patients, including addressing the nation’s cancer drug shortages and ensuring all patients have access to high-quality care. Additional topics covered in this section include ASCO’s initiative to build a rapid learning system for oncology called CancerLinQ and the Society’s recommendations for improving quality and value in cancer care through the Choosing Wisely® campaign and ASCO’s Top Five list.

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FDA Approves Cometriq to Treat Rare Type of Thyroid Cancer

The FDA completed review of Cometriq’s application in six months under the agency’s priority review program. This program provides for an expedited six-month review for drugs that may offer major advances in treatment or that provide a treatment when no adequate therapy exists. Cometriq also received orphan-product designation by the FDA because it is intended to treat a rare disease or condition.

Cometriq is a kinase inhibitor that blocks abnormal kinase proteins involved in the development and growth of medullary cancer cells. Patients should not eat for at least two hours before and onw hour after taking Cometriq.

Patients who were given Cometriq lived an average of 11.2 months without tumor growth compared with an average of four months in patients receiving a sugar pill (placebo).

The safety and effectiveness of Cometriq were established in a clinical study involving 330 patients with medullary thyroid cancer. Treatment with Cometriq increased the length of time a patient lived without the cancer progressing (progression-free survival) and, in some patients, reduced the size of tumors (response rate).

Patients who were given Cometriq lived an average of 11.2 months without tumor growth compared with an average of four months in patients receiving a sugar pill (placebo). Results also showed that 27 percent of patients treated with Cometriq had reductions in tumor size lasting an average of nearly 15 months, while patients who received a placebo saw no reductions. Treatment with Cometriq did not extend patients’ lives.

The prescribing information for Cometriq includes a Boxed Warning alerting patients and health care professionals that severe and fatal bleeding and holes (perforations and fistula) in the colon occurred in some patients.

The most common side effects were diarrhea; inflammation or sores of the mouth; redness, pain, or swelling of the digits (hand-foot syndrome); weight loss; loss of appetite; nausea; fatigue; oral pain; graying or loss of hair color; bad taste; new or worsening high blood pressure; abdominal pain and constipation. The most common laboratory abnormalities included increases in liver enzymes, low calcium and phosphorus, decreased white blood cells and platelets.

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The Legal Side of Cancer

by Laura Riley, Esq

After a diagnosis of cancer, legal issues may be the furthest thing from your mind, and understandably so. You face the obvious medical concerns, accompanied by emotional struggles and practical day-to-day tasks. But intertwined with these are legal issues that may need to be addressed.

Medical Leave
If you need to take a leave of absence from your job for cancer treatment or recovery, the first thing to figure out is what medical leave options are available. If an employer has 50 or more employees in a 75-mile radius (for example, if there are many small branches of a store within 75 miles with a collective total of 50 employees), the employer is required to provide leave under the federal Family and Medical Leave Act. The employer must provide this leave to employees who have been employed for 12 months and have worked at least 1,250 hours. FMLA entitles employees to 12 weeks of leave for a serious medical condition or to take care of a spouse, parent, or child with a serious medical condition.

The benefits of FMLA are that when you return to work, you must be given your exact job back (or an equivalent job in terms of pay, benefits, and responsibilities), and your employer must maintain your health insurance while you’re gone. One drawback is that the leave is unpaid and only lasts 12 weeks, which often is not long enough for cancer treatment and recovery.

Before treatment, find out whether your employer is required to offer FMLA leave and whether your private benefits offer any other leave time.

FMLA outlines the baseline of what employers have to provide, but some employers offer more. Some offer private short- and long-term disability insurance as part of the job’s benefits package. If that’s the case, it’s worth asking for a hard copy of your company’s full plan description.

Before treatment, find out whether your employer is required to offer FMLA leave and whether your private benefits include any other leave time, and speak to your healthcare team about the expected time you will be unable to work so you can start sorting out your medical leave options now.

Health Insurance Coverage
After figuring out what kind of leave is available to you, and how long it will last, the next step is to research your health insurance options after you take leave. The most common way that people obtain health insurance is through their employer or a family member’s employer. These types of employer-sponsored plans are called group plans. Plans that a person buys directly from an insurance company are called individual plans.

If you lose your job, you may be eligible for health insurance coverage under the Consolidated Omnibus Budget Reconciliation Act, or COBRA, a federal law that gives people who work for employers with 20 or more employees the right to continue the same group health insurance coverage that they had while they were working. If you leave your job voluntarily or are terminated because you are too ill to return to work after your 12 weeks of FMLA leave, then COBRA usually will grant you 18 months of coverage. Some states also have mini COBRA laws that might allow you additional time to remain covered on the same insurance policy.

The benefit of maintaining coverage through COBRA is that you can keep the same health insurance coverage, which is important for people with cancer because it means you don’t have to change healthcare providers. The downside of maintaining coverage through COBRA is that its premiums can be expensive. Employers typically subsidize health insurance costs heavily, but on COBRA, employees have to pay the full premium themselves. If you cannot afford to pay the COBRA premiums and are eligible for Medicaid, then the Health Insurance Premium Program may be an option. HIPP is a program available in some states that pays COBRA premiums to help people keep their private health insurance coverage.

The key to qualifying for federal disability benefits is to show how your medical condition and the side effects from its treatment are expected to keep you from working for a year or more.

Once COBRA coverage is exhausted, the Health Insurance Portability and Accountability Act might provide a helpful benefit. You may be familiar with HIPAA in the context of maintaining the privacy of medical information. But this federal law also prohibits health insurance discrimination against individuals based on their pre-existing medical conditions when moving from one group plan to another group plan or from a group plan to a HIPAA guarantee issue plan. One important thing to keep in mind is that in order to take advantage of HIPAA protections, you cannot have a recent break in health insurance coverage that lasts more than 63 days.

Continued Access to Healthcare
During treatment, it’s critical to ensure continued access to healthcare while you are away from work.

Medicaid provides health insurance for certain people who have low incomes, have limited resources, and meet other eligibility requirements. People with cancer often qualify for Medicaid through the Aid for the Aged, Blind, and Disabled Program, which provides coverage to individuals with low incomes who are over 65 or who have a disability. Many states also have programs through Medicaid and the National Breast and Cervical Cancer Early Detection Program that provide low-income residents who have breast or cervical cancer the opportunity to get no-cost cancer treatment coverage after diagnosis. Some hospitals also offer free medical care to people with lower incomes under the Hill-Burton Act. For information on Hill-Burton facilities near you, visit HRSA.gov/GetHealthcare/Affordable/HillBurton.

If your income is too high to qualify for a charity care program or Medicaid, then high-risk pool health insurance plans may be an option. If you are not able to obtain insurance through COBRA, or are not eligible for a HIPAA plan, you may be eligible for a state high-risk insurance pool or major-risk plan. These state plans provide limited health insurance for people who are unable to obtain health insurance coverage in the individual insurance market due to a preexisting condition. States are not required to provide this option for medically uninsurable individuals to access coverage, but many do. Currently, 35 states have major-risk health insurance pools. Of those 35 states that offer high-risk policies, 27 states offer multiple plans for people who are unable to obtain individual health insurance coverage due to a pre-existing condition. In addition, the Affordable Care Act created a federal high-risk option called the Pre-Existing Condition Insurance Program, which is available in each state for people with a preexisting condition who have had no creditable health insurance coverage in the six months prior to application.

In a few states, there are state-sponsored disability insurance programs with specific eligibility requirements. In addition, the federal government offers two long-term disability benefit programs known as Supplemental Security Income and Social Security Disability Insurance. In order to receive these benefits, a person must meet the Social Security Administration’s definition of disability.

The key to qualifying for federal disability benefits is to show how your medical condition and the side effects from its treatment are expected to keep you from working for a year or more. Eligibility for Supplemental Security Income depends on income and asset level, while for Social Security Disability Insurance, the Social Security Administration looks at work history.

If you qualify for Social Security Disability Insurance, and continue to be eligible and stay on it for two years, you will be enrolled in Medicare. Usually Medicare is healthcare coverage for people 65 and older, but it’s also available to people who have received Social Security Disability Insurance benefits for 24 months.

Medicare has four parts, each with different services and coverage. Part A is considered “hospital insurance” and can include coverage for inpatient hospital stays, skilled nursing facilities, and some home healthcare or hospice care. Assuming you’ve had sufficient work history, Part A would be free. In order to enroll in Parts B through D, you would have to apply and pay a monthly fee.

These situations might not apply to you, but it’s important to understand all your legal options while undergoing cancer treatment and recovery.

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Not As I Pictured

My Journey through Cancer

by John Kaplan

As a well-known photo-journalist, I was used to documenting life’s challenges, and even the worst that life could offer a human being. In my more than 25-year career, I had covered revolution in the Philippines, the worst tornadoes to hit the United States in a century, and many other devastating circumstances.

Journalists who cover such real-life drama can fall into an easy trap of believing we are invincible, that the life challenges faced by our subjects will not happen to us. Of course, that is not true, but even at age 48, I had never truly faced my own vulnerability.

I had rarely been ill, so when a routine CT scan revealed a kidney tumor and an eventual rare diagnosis of non- Hodgkin lymphoma growing inside me, picking up my cameras was the last thing on my mind. But, initially as a way to cope with my fear, I began photographing and shooting video of myself through the treatment process. It was a distraction from the tough realities I faced. I soon realized that if I was able to go into remission, and I hoped and prayed that I would, my story could lend hope and courage to other families facing cancer.

I believe that my film shares a powerful will to make it through the fear, balancing hardship with several serendipitous and surprisingly magical moments.

The result is Not As I Pictured, a 54-minute feature-length documentary film. Despite the serious topic, Not As I Pictured is easy to watch, and even humorous at times.

I am now happily in remission. With the goal of giving away 10,000 free copies of Not As I Pictured for personal use to anyone touched by cancer, I hope to share the message that so many cancers today are beginning to be treated as chronic illness rather than death sentence.

When suddenly faced with a lifethreatening illness, I had no idea that so many positive things could come forth from such devastating news, and this has fortunately been at the core of my motivation to make the film. The dreaded news of cancer is certainly no fun, but you can make it through to the other side, back to health and the joy of every day.

I know what a cliché many cancer stories can be. But when you get cancer, you don’t feel like a cliché, you just pray you can beat it. I believe that my film shares a powerful will to make it through the fear, balancing hardship with several serendipitous and surprisingly magical moments. Thus, Not As I Pictured does indeed confront the cliché.

During my treatment, I received so much unexpected help along the way, often from strangers. By giving away the film, I’m determined to give some of that back.

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High-quality Personal Relationships Improve Survival in Women with Breast Cancer

The quality of a woman’s social networks, the personal relationships that surround an individual, appears to be just as important as the size of her networks in predicting breast cancer survival, Kaiser Permanente scientists report in the current issue of Breast Cancer Research and Treatment.

Previous research has shown that women with larger social networks, including spouses or partners, female relatives, friends, religious and social ties, and ties to the community through volunteering, have better breast cancer survival. This study is among the first to show that the quality of those relationships also is important to survival.

The study included 2,264 women who were diagnosed with early-stage, invasive breast cancer between 1997 and 2000, and who were part of the Life After Cancer Epidemiology (LACE) study. After providing information on their personal relationships, they were characterized as socially isolated (few ties), moderately integrated, or socially integrated (many ties).

“We found that women with small social networks had a significantly higher risk of mortality than those with large networks,” said Candyce H. Kroenke, ScD, MPH, a research scientist with the Kaiser Permanente Northern California Division of Research and lead author of the study.

“Women with small networks and high levels of support were not at greater risk than those with large networks, but those with small networks and low levels of support were."

The study found that socially isolated women were 34 percent more likely to die from breast cancer or other causes than socially integrated women.Specifically, larger social networks were “unrelated to recurrence or breast cancer mortality, (they) were associated with lower mortality from all causes,” the authors wrote.

Researchers measured levels of social support from friends and family using a survey that asked women to rate the quality of their relationships on a five-point scale within the past week. For example, the questions included, “My family has accepted my illness,” “family communication about my illness is poor,” and “I feel distant from my friends.” Based on their survey results, the women were additionally characterized as having high or low levels of social support.

The study found that levels of support within relationships were important risk factors for breast cancer mortality. “Women with small networks and high levels of support were not at greater risk than those with large networks, but those with small networks and low levels of support were,” Kroenke said. In fact, women with small networks and low levels of support were 61 percent more likely to die from breast cancer and other causes than those with small networks and high levels of support.

“We also found that when family relationships were less supportive, community and religious ties were critical to survival. This suggests that both the quality of relationships, rather than just the size of the network, matters to survival, and that community relationships matter when relationships with friends and family are less supportive.”

The women were recruited primarily from the Kaiser Permanente Northern California Cancer Registry (83 percent) and the Utah Cancer Registry (12 percent), and enrolled in the study between 11 and 39 months post-diagnosis. After an average of 11 years post-diagnosis, 410 women had died from all causes and 215 from breast cancer.

The study suggests that interventions designed to help women with breast cancer improve the quality of their relationships could have an impact on breast cancer outcomes, Kroenke noted. “Women in the LACE study also gained health advantages from developing community and religious ties.”

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Is My Child OK?

Helping Children Cope with a Family Member’s Cancer

by Kathleen McCue, MA, LSW, CCLS

Someone in your family is dealing with cancer. It might be you, your spouse, or a grandparent. Whoever it is, it’s someone your child loves.

You’ve read all the articles and books on how to talk to children about cancer, spoken with hospital social workers and counselors, and done the best job you could to inform your child about what he or she will experience as a result of having cancer in the family. But how do you know if your child understands, if he or she is really doing OK with this major family challenge?

Behavior Clues
There are several ways to gauge how well your child is coping. As the parent, you are the best judge of your child’s reactions to a disruptive family event. Trust your instincts. If your child seems to be managing well, if he is going on with his life in a normal manner, then he is probably OK. The following are a few areas of behavior that will give you clues as to how well your child is coping:

♦ If routine activities, like sleeping, eating, dressing, and going to the bathroom, carry on about the same as before the cancer diagnosis, then things are probably all right.

Make sure that your child’s routine stays as normal as possible, especially during the chaos of diagnostic tests and treatment decisions.

♦ If your child is still interacting with friends and enjoying normal activities, like play dates, birthday parties, and his favorite sports, he is maintaining a good balance in his life.

♦ If your child is still managing school and assignments at about the same level as before the family member’s cancer, you will know that worry is not disrupting his academic performance.

♦ If your little one is more emotional than before and seems to “melt down” more frequently, he may need some additional help in coping.

♦ Sometimes children’s worries about a loved one’s cancer produce concerns about their own health. Frequent health inquiries, such as complaints about stomachaches and headaches, may be signs that your child is more upset about the cancer than he can verbalize.

Stress Points
Certain particularly difficult stress points exist during the cancer experience. These are the times your child is most likely to falter and show behavioral or emotional reactions to an adult’s cancer. These difficult times include, but are not limited to, the following:

Time of diagnosis
This is a difficult time for everyone in the family. The sooner you can give children adequate information, the better. Make sure that your child’s routine stays as normal as possible, especially during the chaos of diagnostic tests and treatment decisions.

Separation from parents
Any time a child must be apart from their security system, their home and parents, is a time of potential stress responses. If you are in the hospital, spending a lot of time visiting a sick grandparent, or just very busy managing the normal activities of work, home, and now cancer, your child may react to this new state of separation by showing distress.

Treatment changes, for better or worse
A child will get used to the routine of daily radiation therapy, weekly trips to the doctor, or even chronic fatigue that results in naps every afternoon. Once that routine has been established, children tend to adapt and adjust their needs to that schedule. However, when things change (for better or worse), children often react with increased worry and behaviors that indicate distress.

Avoidance
There is one particular coping mechanism often used by children that can be a puzzle to parents. It’s called avoidance. Children are often excellent at putting things that worry them out of their minds. You might hear someone ask your child, “How is Grandpa?” and hear your child’s surprising answer of “good” or “fine.” Perhaps you just shared that Grandpa isn’t doing so well. Did your child not hear you? Is he in a state of denial? Actually, he is engaged in the very healthy process of trying not to think about or talk about something over which he has no control. This is a positive coping mechanism, and one that helps children maintain their day-to-day lives despite the challenges that cancer often imposes on a family. As a parent, pay attention to the behaviors that indicate difficulty coping, and stay a bit more vigilant during stress points. This will help you better support your child when someone in the family is diagnosed with cancer.

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Do I Need Cancer Rehabilitation?

by David S. Zucker, MD, PhD

When you have cancer, it’s easy to forget that your body has trillions of healthy cells. This is true regardless of whether the cancer is stage 0 or stage IV. These healthy cells support you through the rigors of treatment. Too often, however, the support that your healthy cells offer is forgotten in the flurry of activities surrounding treatment and the dramatic changes in your everyday life. These changes are not only physical but also emotional and spiritual. After all, cancer affects the whole person from molecule to spirit.

At the molecular level, your healthy tissues are subjected to profound physiologic demands, demands that take an enormous amount of their energy. Cancer treatments are taxing on the body. Fatigue, pain, difficulty sleeping, numbness and tingling in the limbs, poor balance, and foggy thinking can all impair daily functioning.

At the spiritual level, receiving a cancer diagnosis is often the first time that a person is forced to face his or her own mortality. While frightening, this awareness can open the door to profound and positive changes in how you view yourself, the world, and even cancer. Facing this challenging reality takes courage, insight, and support.

Cancer rehabilitation fully involves the survivor in its implementation. You become the steward of your healthy cells.

So how can cancer rehabilitation help the whole person – molecules to spirit – cope with cancer and treatment?

Cancer rehabilitation is about function – the ability to participate in everyday life. The role of the cancer rehabilitation physician, or onco-physiatrist, is to sort through the cancer- and treatment-related symptoms that interfere with your everyday functioning and, with the help of an interdisciplinary team, create an individualized rehabilitation program that will optimize your well-being and ability to participate in normal activities. A rehabilitation team may include physical therapists, occupational therapists, exercise physiologists, counselors, psycho-oncologists, and speech language pathologists.

Exercise is a key component of cancer rehabilitation. Athletes need to prepare for any physically demanding event. Why then, should it be different for cancer survivors? While a far cry from an athletic event, the same training principles that apply to athletes also apply to cancer survivors. These principles include attaining the correct exercise frequency, intensity, duration, and type, tuned individually to your needs as a cancer survivor.

Even during treatment, exercise can improve strength and fitness. For women with breast cancer going through treatment, exercise has been shown to reduce fatigue. After treatment, the benefits continue to build, including further reductions in fatigue, improved mood, and better ability to return to your everyday activities.

Cancer rehabilitation fully involves the survivor in its implementation. You become the steward of your healthy cells. This imparts a sense of control in what otherwise may seem like an uncontrollable situation. The actual experience of gaining some control over side effects such as fatigue and pain provides an undeniable sense of accomplishment that can energize and empower you to more confidently face the challenging spiritual aspects of cancer. During cancer rehabilitation, you become a fully active participant in your care, the true center of your care team. You and your rehabilitation team attend to your trillions of healthy cells while your medical team attends to curing or putting cancer into remission. This is whole-person care.

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Maintaining Quality of Life in the Face of Cancer-Related Pain

by Tanya J. Uritsky, PharmD

When I saw that Mary was returning to the hospital for a potentially curative treatment, I had to stop by her room. As I walked in, she immediately started to cry. I thought to myself, What did I do? Before I could complete that thought, she jumped up and hugged me. She said, “Tanya, you were able to do what no one has been able to do in 10 years. I was able to live again. Thank you.” This is treating pain in cancer – restoring quality of life and functionality.

Pain is frequently associated with other side effects. Some are physically apparent, like nausea or vomiting. Others may not be so obvious, like depression or anxiety. Moreover, adverse effects of pain medications can create additional problems that will need to be addressed. The first step to treating cancer pain is letting your doctor know about it.

Addressing Cancer Pain
If your doctor doesn’t ask about your pain level, be sure to speak up. You may also want to talk with a pain or palliative care specialist about treating your cancerrelated pain.

The first step to treating cancer pain is letting your doctor know about it.

Arming yourself with information about different types of pain may help you better describe your pain and get the most out of your visit.

♦ Acute pain comes and goes quickly and ranges from mild to severe. It may be caused by medical procedures or an injury to muscle or tissue.

♦ Chronic pain either does not go away or comes back frequently. It too can range from mild to severe. A tumor or previous injuries can cause this type of pain.

♦ Breakthrough pain is a sudden, intense increase in pain that may occur by itself or as the result of a specific activity.

♦ Neuropathic pain is caused by damage to the nerves. Often described as burning or shooting, this pain may be a side effect of chemotherapy or radiation, or it may be caused by the cancer itself.

Treating Cancer Pain
A range of pharmacologic options is available to treat pain. Opioids (like morphine and oxycodone) are often part of cancer pain treatment. They can be very effective for moderate to severe pain. However, they do not come without risks. These medications do have side effects. It is recommended that you take laxatives and stool softeners to prevent constipation while on these medications. In addition, over-sedation and confusion should be monitored and reported. Many people fear becoming addicted to these types of medications; however, using pain medications as prescribed to treat cancer pain rarely leads to addiction.

Acetaminophen and non-steroidal anti-inflammatory medications (like ibuprofen or naproxen) can also be effective for cancer pain. They may be particularly helpful for pain caused by disease in the bones. Following the maximum dosage limits of these medications will decrease the risks associated with treatment. Always ask your doctor before taking these types of medications.

Antidepressants and anti-seizure medications may be helpful in managing cancer pain due to nerve injury. Additionally, non-pharmacologic therapies, such as physical therapy, acupuncture, or massage, may be an option.

Regardless of the specific regimen, keep a log of which medications you take, how often you take them, and the dosages taken. Smartphone apps and online resources, such as MyMedSchedule.com, can help you keep track. It is also a good idea to use only one pharmacy so that the pharmacist can accurately assess your risk for drug-related complications and monitor any potential drug interactions.

Going Beyond the Physical
Physical pain is often complicated by emotional, spiritual, and psychological burdens. Leaning on members of your healthcare team who can help manage emotional issues, like anxiety and depression, will also help with pain control and help improve your quality of life.

A cancer diagnosis does not mean you have to live in pain. Many therapies can be used to achieve good pain control and restore your quality of life.

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American Lung Association Resource Offers Lung Cancer Patients and Caregivers

“Support from Day One”

The American Lung Association has launched Facing Lung Cancer: Support from Day One, a new patient- and caregiver-focused, web-based lung cancer information resource. This online tool offers interactive features that address specific topics of interest for people living with lung cancer and their loved ones. 

“Lung cancer impacts one in 14 Americans and is the leading cancer killer in the nation,” said Norman H. Edelman, MD, chief medical officer of the American Lung Association. “Because lung cancer is a complex and life-changing disease, it is important that people living with lung cancer know they are not alone; Facing Lung Cancer offers them support and guidance during every stage of their disease.”

"People living with lung cancer need to be able to access this and other timely information.”

Facing Lung Cancer, made possible through a partnership and financial support from Lilly Oncology, concentrates on the most important information that people affected by lung cancer need from day one of their diagnosis. In addition to providing general lung cancer education, the site allows users to design a customized guide to use during conversations with their lung cancer care team.  More specific features include:  

 
• “Your Profile, Your Goals” – a personalized web experience that focuses on the issues that users face throughout the various stages of living with their disease; and
• “Ask the Experts” – a series of interviews with renowned medical experts.

“We believe in the importance of the American Lung Association’s work to help those living with lung cancer, and we welcome the opportunity to help make Facing Lung Cancer a reality,” said Allen Melemed, MD, senior medical director and product development leader for Lilly Oncology.  “From diagnosis through each stage of their disease, Americans affected by lung cancer now have a place to turn for help.”

The American Lung Association invests in research to uncover strategies for preventing lung cancer, increasing the survival rate and improving lung cancer patients’ quality of life.  As part of its comprehensive approach to lung cancer, the Lung Association also advocates for increased lung cancer funding at the National Institutes of Health, especially the National Cancer Institute.

“We believe this resource will transform the way lung cancer is viewed and discussed,” said Dr. Edelman. “Lung cancer stands on the precipice of change.  A major study has identified an early detection method that may reduce lung cancer deaths by 20 percent.  Clinical trials are under way to test the safety of new therapies.  Researchers are making important progress in their complex work to create targeted and individualized therapies for lung cancer.  These are all reasons for hope.  People living with lung cancer need to be able to access this and other timely information.”

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When Food Just Doesn’t Taste the Same

Tips for Coping with Taste Aversions Caused by Cancer Treatment

by Laura McLaughlin, RN, PhD, and Suzanne Mahon, RN, DNSc, AOCN, APNG

Taste helps identify food preferences and stimulates appetite. Food has the power to comfort, as pleasant-tasting foods stimulate the pleasure centers of the brain. Taste also helps identify whether food is safe to consume, because foods that taste abnormal, bitter, or sour may be spoiled or tainted.

Taste loss, or aversion, on the other hand, is a common, but under-recognized problem for people treated for cancer. Cancer treatments resulting in mouth sores may cause taste changes. You may experience an annoying metallic or bitter taste and burning mouth pain. Fortunately, taste will usually return to normal after your mouth sores have healed. Additionally, taste may be altered because of chemotherapy, radiation therapy, or surgery in the mouth. After treatment for head and neck cancer, taste may be permanently altered if taste buds do not fully recover or are damaged from treatment.

So what can you do if your taste is impaired? Here are some tips to help you manage some of the taste aversions caused by cancer treatment.

Taste is only one aspect of flavor recognition. Flavors are also recognized by their appearance, smell, texture, and temperature.

Dry Mouth
Cancer treatments to the head and neck can affect the salivary glands and cause dry mouth. Without enough saliva, food particles cannot reach the taste cells. Dry mouth also disrupts flavor recognition because thick saliva is very salty, and too much salt can affect the way foods taste. If thick saliva is a problem, rinse your mouth before eating and drink extra fluids to help food particles reach the taste buds and help balance the salt content of your saliva. Chewing carefully and swirling food around in your mouth can also be helpful. Pureed foods, soups, sauces, and gravy are good choices when you are experiencing dry mouth.

Diminished Taste
There are five basic tastes: sweet, sour, salty, bitter, and savory. Like primary colors, combinations of these basic tastes result in countless flavors. Experiment with different foods and seasonings. If flavors in general don’t taste right, try everything. Foods you never liked before may now taste good to you. This is especially true of bitter foods, like broccoli, cabbage, and asparagus.

Often after cancer treatment, one basic taste is more impaired than others. If you miss the pleasant bitterness of coffee, try brewing it more strongly or use less cream and sweetener. If milk chocolate tastes too sweet, try bittersweet or dark chocolate.

Taste is only one aspect of flavor recognition. Flavors are also recognized by their appearance, smell, texture, and temperature. So when food just doesn’t taste the same, try focusing on the nontaste aspects of flavor.

♦ Appearance Eat pretty, colorful foods. Think of how a juicy burger makes your mouth water when you see one in a commercial.

♦ Smell Eat warm foods, as they are easier to smell than cold foods. Use aromatic herbs generously.

♦ Texture Smooth and creamy foods are good choices at any phase of cancer treatment. If you have good saliva flow and no mouth sores, try experimenting with food texture by eating foods that are crunchy, chewy, gooey, and spicy.

♦ Temperature Though coffee or tea may not taste the same as it did before treatment, there may still be pleasure and comfort in a warm morning beverage. It feels good to hold a warm mug, inhale the familiar aroma, and experience the warming sensation.

Bad Taste and Burning Mouth Pain
If you have a bad taste in your mouth or are experiencing burning mouth pain, avoid temperature extremes. Warm or cool foods may be more soothing than hot or cold foods. Smooth, creamy, and blended foods are good choices because they do not overstimulate the nerves on the tongue that cause these unpleasant sensations.

Loss of Appetite
When food doesn’t taste good, eating becomes a chore. Some people with severely impaired taste may even forget to eat. If you are dealing with loss of appetite, set aside specific meal times, and make the dining experience more pleasant by eating with friends and family.

Understanding the nature of taste aversions can help you identify the best ways to cope with these problems. Learning what works best for you is the key to enjoying food again when it just doesn’t taste the same because of cancer treatment.

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Gratitude

by Linda Goss

 

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So You Think You Can Dance Ballroom Expert Mary Murphy Tangos with Thyroid Cancer

by Jessica Webb

Most people are familiar with ballroom dance champion and choreographer Mary Murphy as a judge on the FOX reality show So You Think You Can Dance, where her larger-than-life personality, boisterous laugh, and high-pitched squeals have garnered her the nickname the “Queen of Scream.” However, in December 2010, surgery for a tumor on her thyroid threatened to quiet her trademark voice.

Mary’s tumor was discovered during a routine gynecologic exam, when her persistent cough led her doctor to check her lymph nodes. “When she put her hands on my neck, her eyes got really big,” Mary candidly reveals in an interview with Coping® magazine. “And, oh my goodness, my heart just dropped.”

The next day, Mary met with a specialist who recommended watchful waiting, as the tumor appeared to be slow growing. She would need to return for follow-up visits every six months.

When the six-month mark rolled around, “I showed up like every good student would,” Mary says. “And they seemed to think that there was no growth, and that it wasn’t cancer.” This news left her feeling incredibly positive – perhaps a little too positive, even.

“I got busy,” Mary admits. “I got super busy.” In addition to filming back-to-back seasons of SYTYCD, Mary also signed on for the Canadian version of the hit show. Before she could catch her breath, three years had passed since her last checkup. But Mary wasn’t too worried about the tumor in her neck. “I felt like I could just wish it away,” she confesses. After all, she had gotten a positive report during her last checkup.

“To have this incredibly good news and incredibly bad news all at the same time, you don’t know how to feel.”

However, Mary’s tumor had begun to grow, becoming noticeably visible. “All of a sudden, I started getting more tired; my voice became raspy,” Mary says. “It took energy to talk. Eventually, it became difficult to swallow.” These troubling symptoms convinced Mary to finally make that follow-up appointment she’d been putting off. Her doctor confirmed that the tumor had indeed grown, and it would need to be removed. Not only that, but because of the location and size of the tumor, there was a chance surgery would leave her unable to speak.

“That got my attention!” Mary proclaims, having recently signed a three-year deal with FOX at the time. “I felt like I can fight cancer, but I can’t fight not being able to talk again.”

After she awoke from surgery, the first thing Mary wanted to know was whether she still had her voice. “I pointed to my throat,” she says, “and my doctors said, ‘Yes, you’re going to be able to talk.’” Mary was relieved.

Next, she made the sign of a C with her hand and was given the news that the tumor was cancerous. “To have this incredibly good news and incredibly bad news all at the same time,” Mary concedes, “you don’t know how to feel.”

Though the cancer was successfully removed during surgery, Mary underwent radioactive iodine treatment to destroy any remaining thyroid cells in her body. This required seven days of isolation – not an easy task for someone as outgoing as Mary.

“I’m a people person,” Mary says, letting loose her signature laugh. “I certainly was chatting up a storm on the phone. I was talking way too soon, I was so happy to be talking.”

Though Mary took a year off from SYTYCD to deal with her health, she came back cancer free and screaming (almost) as loud as ever in Season 8. “It just felt like a huge celebration,” Mary says of her return. “Everything was right with the world again, and I had come to the other side.”

As someone who’s always up for a good laugh, Mary recommends that anyone facing cancer should watch as many funny movies as you can to stay in good spirits. It’s what helped her get through that dreadful week of isolation. “There is no way that a hysterically funny movie is not going to make you laugh,” she says. “Even when you’re facing some of the saddest times of your life.”

Mary’s next piece of advice: “When somebody says you need a checkup every six months, do it.”

♦ ♦ ♦ ♦ ♦

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What You Need to Know if You Choose Breast Reconstruction

by Karen M. Horton, MD, MSC, FACS, FRCSD

A woman’s feelings about her breasts can influence her self-image and femininity. Breast reconstruction helps to restore a woman’s body image after facing cancer treatment. The goal of breast reconstruction is to help women feel better about themselves and to provide a beautiful, natural, long-lasting breast reconstruction.

Reconstruction is a very personal procedure, and it should be uniquely tailored to each woman. The ideal breast reconstruction takes into account a woman’s body shape and anatomy, lifestyle, personal goals, and medical details to find the very best reconstructive technique for her. Some of the latest advances in breast reconstruction include nipple-preservation, microsurgical techniques that preserve major muscles of the body, and complete reconstruction in a single stage.

Nipple-Sparing Mastectomy
Nipple-sparing mastectomy is a state-of-the-art technique that preserves the nipple and areola, in addition to the breast skin. A tissue sample from under the nipple is sent to a pathology lab to confirm only normal cells remain before the procedure is done. Nipple-sparing mastectomy preserves the natural contour of the breast, which is usually lost by traditional mastectomy techniques, and avoids a second surgery. This is the procedure of choice for BRCA-positive women seeking risk-reducing prophylactic surgery.

The ideal breast reconstruction takes into account a woman’s body shape and anatomy, lifestyle, personal goals, and medical details to find the very best reconstructive technique for her.

Microsurgical Reconstruction
Microsurgery is a specialized technique that surgically transplants skin and fat (a flap) from the abdomen or the inner thighs to the chest using an operating microscope. breast. These flaps have a consistency most similar to natural breasts and result in a “tummy tuck” effect. Because no muscle is included, potential abdominal complications, such as abdominal Unlike implants, a microsurgical reconstruction provides a permanent, warm, soft, living breast reconstruction that moves naturally, lasts a lifetime, and helps to counteract past radiation, infection, or scar tissue.

♦ DIEP and SIEA Flap Unlike traditional options that permanently sacrifice the rectus abdominis muscle (like the TRAM flap), DIEP and SIEA flaps preserve this muscle and only use skin and fat from the abdomen to create a new hernia, bulge, and weakness, are avoided.

♦ TUG Flap If abdominal tissue is not available, the TUG flap provides a permanent, warm, soft, and shapely breast reconstruction using tissue from the upper inner thigh, which results in an “inner thigh lift” effect. Immediate nipple and areola reconstruction is also possible in one operation.

Immediate Single-Stage Implant Breast Reconstruction
Permanent, postoperatively adjustable saline implants that are specifically tailored to a woman’s desires for her reconstruction are used in this technique. In a single procedure, implants are placed either on top of or below the pectoralis major muscle for the most natural look with minimal downtime.

Breast Reconstruction after Lumpectomy and Radiation
Not every woman requires a mastectomy for cancer. Breast reconstruction using local tissue rearrangement after a lumpectomy promotes a natural breast shape and may preserve function (sensation and ability to breast-feed). The nipple and areola are preserved, and the remaining tissue is rearranged to form a perkier or smaller shape using a reduction or lift technique in one operation. An implant can be placed to balance the breasts, correct asymmetry, and achieve a woman’s personal goals for reconstruction.

Revision Breast Surgery
Improvement of the appearance of reconstructed breasts has psychological benefits for a woman and can improve her quality of life. Revision of unsatisfactory reconstructions to create better symmetry, proportion, and balance is available to breast cancer survivors. Implant revision includes removal, replacement, correction of deformity, or conversion of implant reconstruction to a flap. Flap revision can involve contouring, scar revisions, “lipofilling” (free fat grafting), augmentation, or donor site contouring for the best aesthetic results.

The breast reconstruction journey should be a positive and empowering experience for women. Breast cancer survivors can be empowered to move forward after surgery, feel whole again, and be proud of their reconstruction. Symmetry and aesthetic should be considered first, without sacrificing major muscles of the body. The goal is to create a beautiful and well-proportioned breast for each woman, both in clothing and when nude.

♦ ♦ ♦ ♦ ♦

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CaringBridge Serves More People in More Ways with New Services

CaringBridge, a social network that keeps families and loved ones connected during any type of health event, is launching new services that will help even more people support their loved ones during times of need: the SupportPlanner and the Amplifier Hub.

The SupportPlanner
The SupportPlanner (SupportPlanner.CaringBridge.org) helps family and friends coordinate care and organize tasks.

Some examples of common helpful tasks that can be cordindated in the planner include:

• Being a meal planner
• Providing childcare during appointment times
• Caring for pets
• Updating the patient’s website
• Providing transportation
• Doing household chores
• Caregiver support

The Amplifer Hub
The Amplifier Hub (AmplifierHub.CaringBridge.org) gives volunteers the opportunity to spread the word about CaringBridge while connecting with volunteers and other supporters.

Features on the Amplifier Hub include:

• Share your story
• Find social network resources
• Request resources for an upcoming event
• Join the Speakers Bureau
• Volunteer virtually, at the CaringBridge offices or in your community
• Connect with new organizations
• Host an event or find an event in your area

♦ ♦ ♦ ♦ ♦

For more information, visit caringbridge.org.

This article was published in Coping® with Cancer magazine, September/October 2012.

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Man, Cancer, Sex

Strategies to Ease the Tension

by Anne Katz, RN, PhD



One of the greatest myths in society suggests that all men are sexual machines. The expectation is that men can have sex on demand, at any time, in any place, no matter what his feelings or emotions are. The inference is that if a man can have an erection, then everything is okay. Here’s another myth: Men don’t talk about their feelings and certainly don’t want to talk about sex. Well, the last part may be partially true. It’s not always easy to talk in a meaningful way about sex.

Perhaps the biggest barrier to talking about sex is that we are afraid. What if we say the wrong thing and upset our partner? What if we say a word and she laughs? What if something we say hurts or offends our partner? Will we be rejected or made to feel like a fool for expressing our innermost feelings or fears? How do we talk about it? Here are some suggestions to help you and your partner talk about sex.

Find the Time
Just like any other important discussion you’ve ever had, you need to set aside time to talk about sex. This is not a conversation you should have while rushing to get to work. You probably find the time to plan a vacation, right? So find the time to talk about this important part of your relationship. Any problems you may be having did not start overnight, and they are not going to be solved overnight, either. So when you do talk, remember to plan to talk again, and soon. But set limits for how long you are going to talk. When the conversation is over, it’s over, and should not be strung out over days and weeks.

Just like any other important discussion you’ve ever had, you need to set aside time to talk about sex.



Dr. Anne Katz


And when you are planning the time to talk, plan the place, as well. As strange as this may sound, talking about sex shouldn’t happen in the bedroom (or any other place where you have sex). Find a neutral place and turn off the TV, the stereo, and the phone. Lock the front door. Make sure the dog has food and water and has been out for a walk. Interruptions can make a sensitive topic seem even more overwhelming and may break the flow of the discussion or may distract one or both of you from the task at hand.

Name the Problem
You need to decide ahead of time what you want to talk about. And you need to be prepared to discuss it openly, honestly, and constructively. This requires planning, and it is a good idea to let your partner know what you want to talk about. Saying, “Honey, we need to talk about our sex life” is too broad and may be confusing to your partner. What about your sex life? The frequency, the type of activity, your feelings about it? Be clear with your partner so that he or she can also do some thinking ahead of time. A better invitation may be “I would like to talk about the difficulties I’ve been having with erections lately.”

Practice Straight Talk
Talking about sex requires you to be clear in your words and expectations. Many of us think that our partner can or should be able to guess or intuit our needs and feelings. You may know each other very well, you may be able to finish each other’s sentences, and you may even think the same things at the same time, but if you want to solve a problem, then you need to be straightforward and clear about what you are thinking and feeling.

When your partner speaks, make the effort to listen with both ears and your heart and mind.

Tell your partner what you are feeling and why this is happening. The context is very important to avoid your partner thinking that the reason you are feeling this way is something that he or she has done. A vague statement such as “I have no desire for sex” may be interpreted as “He doesn’t love or want me anymore.” And what you really mean is that since your surgery, you are very tired and just don’t have the energy for sex right now.

Use the “I” Word
It is important to talk about yourself and not put words in the mouth of your partner. That’s not fair, and it won’t help your conversation. If you need more direct stimulation since your surgery to get aroused, say something like “I would love it if you would touch my penis with more pressure. Let me show you how I like it.” That’s much more constructive than saying, “You don’t know how to get me excited.”

By talking in “I” statements, you take ownership of your own feelings and don’t put words in your partner’s mouth or assume that you know what he or she is thinking or feeling. And from your partner’s perspective, it doesn’t feel like blame.

Balance the Negative and the Positive
There are different ways of saying things, and how you say something can really influence how the message is received. “You make me crazy with your demands for sex” has a very different tone from “I don’t want sex as often as you seem to.” Sometimes when talking about sex, we have to say things that may seem hurtful or may appear to our partner as a criticism. Balancing the positive and the negative is a delicate negotiation but, if done carefully, can protect feelings and reduce the risk of causing hurt.

Actively Listen
When your partner speaks, make the effort to listen with both ears and your heart and mind. Don’t think about the mess in the garage, what you have to do at work tomorrow, or how you’ve had the conversation before. Empty your mind of past memories and future plans and truly listen. When you are actively listening to your partner, let go of your own thoughts and opinions for a moment or two, and you may be surprised that your partner’s position is not that far from yours.

Get Help
Don’t wait until you are faced with a crisis to get help. Marriage and sex therapists specialize in helping couples to understand what is affecting their relationship and, more importantly, helping them to find a better way of talking, reacting, or loving.

Men often think that they have to solve every problem or crisis, and this extends into their relationships. Being part of a couple means that resolution of problems needs to be shared, so don’t think you have to fix it – work on it together. Communication is central to all our relationships. But we all need practice in getting it right.

♦ ♦ ♦ ♦ ♦

Dr. Anne Katz is an author and the sexuality counselor at CancerCare Manitoba in Winnipeg, Manitoba, Canada.

Excerpted with permission from Man Cancer Sex by Anne Katz, RN, PhD, copyright © 2010 by the Oncology Nursing Society. All rights reserved. Copies of the book may be purchased through the Oncology Nursing Society at ons.org/publications.

This article was published in Coping® with Cancer magazine, September/October 2012.

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Making the Most of Your Medical Appointments

Multiple Myeloma




Your oncologist, nurses, and other members of your healthcare team work together to treat your multiple myeloma. Since medical appointments are the main time you will interact with your team, being as prepared as possible for these visits is important. It will help ensure that you understand your diagnosis and treatment, get answers to your questions, and feel more satisfied with your overall care. Here are some ways to prepare for your medical appointments:

Communicate with your healthcare team.
You are the best person to keep your doctors and nurses informed about how your treatment is affecting your daily activities, and about any other concerns you may have. After all, they can’t help you with a problem if you don’t make them aware of it.

You will need to make many important decisions about your care throughout your treatment. The best way to be ready to make these decisions is to communicate openly with your healthcare team and ask them to clarify anything you do not understand. If your doctors and nurses are unable to provide direct assistance with a concern, they will usually be able to refer you to someone else who can help.

Be sure to take notes so that you can remember your doctor’s responses and instructions.

Learn about your treatment options.
There are many effective treatments for multiple myeloma, such as stem cell transplants, chemotherapy, and newer targeted drugs. Ask your healthcare team to recommend publications or websites that explain how these treatments work.

Write down your questions.
This way, you won’t forget to ask about something that is important to you. Make the questions specific and brief, and prioritize them so that the most important questions get answered first. Be sure to take notes so that you can remember your doctor’s responses and instructions.

Try repeating the information back to your doctor if something is unclear. Or, if you prefer visual aids, ask to see X-rays, slides, or diagrams. You may also consider bringing someone else with you to your appointments. That person can serve as a valuable second set of ears. He or she may also be able to think of important questions to ask your doctor or help remember details you may have forgotten.

Ask your doctor if there is a better time to follow up or another person that you can speak with if there is anything you cannot resolve during your appointment.

Keep a treatment journal.
Use it to record treatment dates, how your multiple myeloma is affecting you, and any side effects you may be experiencing. You can also use this journal to keep track of upcoming appointments and to write down the questions you would like to ask during visits. Don’t forget to take the journal with you to your appointments so you’ll have the information on hand to share with your doctor.

Get a second opinion.
It is common and even encouraged for people to request second opinions from a blood cancer specialist (known as a hematologistoncologist). Many insurance carriers, including Medicare, cover this request. When seeking out a second opinion, ask your doctor to recommend a hematologistoncologist, or visit the patient section of the American Society of Hematology’s website, hematology.org, to search for a specialist in your area. After getting a second opinion, you may decide to continue working with your previous oncologist. No matter what you decide, it’s likely you’ll feel more confident knowing you’re making the best decision for you.

12 Questions to Ask Your Doctor

Here is a list of 12 questions you should ask your doctor to help you gain a better understanding of your diagnosis and treatment options:

1. What stage is my multiple myeloma?
2. Is treatment recommended at this point?
3. If so, what are my treatment options?
4. What is the goal of the recommended treatment?
5. What are the possible side effects?
6. How often will I receive treatment?
7. How much will my treatment cost?
8. Is financial help available if I need it?
9. Where can I learn more about multiple myeloma and available resources?
10. Who should I call if I have non-urgent questions about my treatment?
11. Who should I call in case of an emergency?
12. Is there anything else I should know?

♦ ♦ ♦ ♦ ♦

For more information about cancer and free support services for anyone affected by cancer, call CancerCare at (800) 813-HOPE (4673) or visit CancerCare.org.

Excerpted with permission from CancerCare.org, copyright © 2012 by CancerCare.

This article was published in Coping® with Cancer magazine, September/October 2012.

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Cancer’s Gift

by Jim Higley



As word of my diagnosis spread through the various circles in my life, I had countless conversations with friends, relatives, and coworkers. These were caring conversations. Reassuring conversations. Conversations focused on this general belief that everything would be OK. It seemed, somehow, that everyone had magical powers with which to see into the future. And what they saw was always good.

“I know you’ll be fine,” they repeated constantly.

While I appreciated the sentiment and optimism, I found that comment funny. In many ways, I felt as if people were trying to gain my reassurance, which I found hard to give convincingly.

Karen’s talk was the most motivating, uplifting conversation ever. Not just during that period in my life. I mean ever.

I’m candid. I’m blunt. And while I certainly wanted to have a positive attitude, I was also realistic. I knew this story could play out in many ways. After all, our family batting average was terrible.

Two of the conversations during those early days, however, were truly stop-you-dead-in-your-tracks-and-shake-you-by-your-shirt-collar moments.

The first, and most powerful one, was with a casual friend named Karen. I had known her tangentially for several years because she was a friend of some of my good friends. But our paths rarely crossed. She was about my age. Petite. A glowing, energetic person. I knew she had had her own issues with cancer a few years earlier, but that was the extent of what I knew. She was simply Karen – my friend’s fun, spirited friend who had had breast cancer. Little did I know she would become one of the most influential people in the story of my life.

Her first contact with me arrived as a voice mail. “Jim, it’s Karen, Sarah’s friend. I’m so sorry to hear what you’re going through. Listen, I know you’re buried, but I really want to talk to you. I have something to tell you. It’s important. Could you call me when you have a few minutes? Thanks!” Click.

“If your mind and heart are open, I promise you will come out of this with a gift that will change your life.”

I was intrigued. I was curious. And I wanted to meet Karen immediately. So we did. The very next day.

Karen’s talk was the most motivating, uplifting conversation ever. Not just during that period in my life. I mean ever. We didn’t talk about her own experiences through surgeries and recovery. We didn’t talk about the beating her body had to endure through her treatment. We didn’t talk about being afraid. Karen had only one thing to teach me.

“Jim, you are going to receive the most amazing gift as you go through this,” she promised.

I took mental notes as she shared with me the extraordinary gift she ultimately received as the result of her journey. It was like a moment from the kung fu television series I used to watch as a child. There was always a scene when the little boy would sit in front of old Master Po, who would say, “When you can take the pebble from my hand, it will be time for you to leave.”

I wanted the pebble Karen was holding.

“You may not even realize it at the time, Jim,” she said, “but if your mind and heart are open, I promise you will come out of this with a gift that will change your life. Your gift will be yours and yours alone. And you will never be the same. Regardless of what happens with your cancer.”

She also gave me a notebook.

“Write, Jim,” she said. “Take time to write.”

For the first time in days, I was excited. Karen framed my life in a way no one else could. Not only was I filled with her energy, but I was also beginning to experience a new taste of my own.

Karen came to teach me a lesson. And I listened.

There was a gift out there with my name on it.

♦ ♦ ♦ ♦ ♦

Jim Higley is a prostate cancer survivor and father of three. He writes for The Huffington Post and is executive director of Single Jingles Testicular Cancer Foundation. Learn more at BobbleheadDad.com.

Jim shares an electronic version of his book free of cost with anyone going through his or her own cancer journey. Send an email to .(JavaScript must be enabled to view this email address) and include the type of eReader you have in order to receive the electronic file.

Excerpted with permission from Bobblehead Dad: 25 Life Lessons I Forgot I Knew, by Jim Higley, copyright © 2011 by James R. Higley. All rights reserved. BobbleheadDad.com

This article was published in Coping® with Cancer magazine, September/October 2012.

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Patient Advocate Foundation Receives Support to Aid Lung Cancer Survivors through Its Co-Pay Relief Program




The Patient Advocate Foundation has received a generous contribution that will allow the Foundation to continue to support people with non-squamous non-small cell lung cancer within its Co-Pay Relief Program. The program provides direct financial support for pharmaceutical co-payments to insured patients, including Medicare Part D beneficiaries, who financially and medically qualify, significantly reducing the financial burden associated with high medication costs.

Eligibility Criteria

• Patient should be insured and insurance must cover the medication for which patient seeks assistance.
• Patient must have a verified diagnosis of Non-Small Cell Lung Cancer
• Patient must reside and receive treatment in the United States.
• Patient's income must fall below 500% of the Federal Poverty Level.

Information About the Disease
About 85% to 90% of lung cancers are non-small cell lung cancer (NSCLC). There are 3 main subtypes of NSCLC. The cells in these subtypes differ in size, shape, and chemical make-up when looked at under a microscope. But they are grouped together because the approach to treatment and prognosis (outlook) are very similar.

Squamous cell (epidermoid) carcinoma: About 25% to 30% of all lung cancers are squamous cell carcinomas. These cancers start in early versions of squamous cells, which are flat cells that line the inside of the airways in the lungs. They are often linked to a history of smoking and tend to be found in the middle of the lungs, near a bronchus.

Adenocarcinoma: About 40% of lung cancers are adenocarcinomas. These cancers start in early versions of the cells that would normally secrete substances such as mucus. This type of lung cancer occurs mainly in people who smoke (or have smoked), but it is also the most common type of lung cancer seen in non-smokers. It is more common in women than in men, and it is more likely to occur in younger people than other types of lung cancer. Adenocarcinoma is usually found in the outer region of the lung. It tends to grow slower than other types of lung cancer, and is more likely to be found before it has spread outside of the lung. People with the type of adenocarcinoma called adenocarcinoma in situ (previously called bronchioloalveolar carcinoma) tend to have a better outlook (prognosis) than those with other types of lung cancer.

Large cell (undifferentiated) carcinoma: This type of cancer accounts for about 10% to 15% of lung cancers. It may appear in any part of the lung. It tends to grow and spread quickly, which can make it harder to treat. A subtype of large cell carcinoma, known as large cell neuroendocrine carcinoma, is a fast-growing cancer that is very similar to small cell lung cancer.

Other subtypes: There are also a few other subtypes of non-small cell lung cancer, such as adenosquamous carcinoma and sarcomatoid carcinoma. These are much less common.

♦ ♦ ♦ ♦ ♦

For more information or to apply, visit copays.org or call (866) 512-3861.

This article was published in Coping® with Cancer magazine, September/October 2012.

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Three Life-Changing Words

by Darren Neuberger



“You have cancer.” It’s funny how three words can stop you in your tracks and send you to a place of uncertainty and confusion. That was my reality when I was told that I had cancer at age 34. A nagging cough for seven months was my only noticeable symptom, but thanks to the persistence of my wife, Jaylene, I am alive and extremely well today, almost seven years after treatment.

Who would have thought that a seemingly simple cough would change my life forever? As many others before me have discovered, sometimes the symptoms don’t click with the illness. That’s how it was for me. After three clinic visits for my cough over a seven-month period, I heard those three dreaded words, and my life became very different in a matter of three seconds.

I wanted to paint a different picture of cancer and show that millions of us are surviving this disease.

We didn’t know what type of cancer I had at that point, but after a weekend of waiting, I was officially diagnosed with acute lymphocytic leukemia. I could list all of the thoughts and emotions that wandered through my mind, but shock and fear are the two that stood out the most. After the fog in my mind lifted, it was time to face my reality. I challenged this thing called cancer to a fight and thought, “Let’s ring the bell, because this is on!”

I will never say that my two-year journey was easy, because it wasn’t. However, I was strong, positive, and I had the most amazing people in my corner. Because of my wife, I found the strength I needed when it would have been easy to stay down. Giving up was never an option. To have had the strength to endure five months as an inpatient on a cancer ward, more than six hundred chemotherapy treatments, two weeks of brain radiation, a trip to reverse isolation in ICU, and more than thirty-four blood and platelet transfusions is a testament that I can get through anything if I allow myself to believe so.

I began to notice a common, negative theme around cancer. After seeing so much gloom and doom, I wanted to paint a different picture of cancer and show that millions of us are surviving this disease. I knew that when I finished my treatments I was going to be a face and a voice for all of us that are surviving. I know firsthand that cancer is very scary, but I’m living proof that you can survive and thrive after cancer.

♦ ♦ ♦ ♦ ♦

Darren Neuberger is a certified empowerment coach, inspirational speaker, stand-up comedian, author, and acute lymphocytic leukemia survivor living in Lethbridge, Alberta, Canada. He also hosts an Internet radio show on BlogTalkRadio.com called Let’s Talk About It Radio Show. His book Let’s Talk About It: Inspiring Stories from Young Adult Cancer Survivors is available on amazon.com.

This article was published in Coping® with Cancer magazine, September/October 2012.

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Thriving Through Your Healing Journey

by Steven Spidell, DMin, BCC



Thriving with cancer, not just surviving, is becoming the goal of many cancer survivors. While accessing spiritual resources has mostly been an individual pursuit, help is coming from an unexpected source: the rapid rise of integrative and complementary medical approaches within the healthcare system.

This movement in healthcare has been set into motion by the demand of cancer survivors for holistic approaches to both cancer treatment and the healing processes. A holistic approach recognizes that mind, body, and spirit are not separate entities but expressions of a larger, multidimensional realm; hence, the flourishing of spiritual practices in the lives of cancer survivors and their caregivers.

Grey, sterile corridors, bus-station style waiting rooms, and schedules that whipsaw exhausted patients from exam room to exam room are being replaced with color and art, comfortable, spacious waiting areas, and respect for the time and coordination of cancer survivors’ appointments. Hospitals now talk about creating a healing environment and the positive benefits of beauty, music, and the therapeutics of sound, touch, and sight. Modern hospitals are becoming places in which chemistry is complemented with kindness.

Your spiritual options and opportunities are as wide as your imagination.



Rev. Dr. Steven Spidell


Drawing upon a multitude of spiritual resources can lead to stress reduction, energy renewal and flow, personal centeredness and serenity, the emergence of meaning, a positive view that your life truly matters, and the explosive, lifetransforming power of hope. Energy medicine and practices, such as healing touch, yoga, Reiki, massage, music therapy, and dance, free up the natural flow of energy within the body. The greater the flow, the greater the healing effects. Nurturing mental and emotional sharpness through mindfulness, meditation, journaling, aromatherapy, “walking the labyrinth,” visualization, hypnosis, art, and poetry releases the incredible powers of the mind to contribute to the healing process.

Involvement in religious communities has also been shown to provide valuable resources for the healing journey. Health benefits are derived from being an active member of a faith community, participating in worship, praying, and celebrating through rituals and sacraments. Religious beliefs also make a dynamic contribution to living well through such principles as forgiveness, gratitude, generosity, healing, service, meaning, and salvation. Many religions have practices that can increase your awareness of the spiritual forces that can transform your life.

Be sure to check the opportunities available in your very own hospital and clinic for their complementary and integrative programs. Your spiritual options and opportunities are as wide as your imagination. The essential issue is to be intentional about discovering and incorporating those spiritual resources that make sense to you, your history, and your personality. To experience the benefit, you must use spiritual resources just as you use medicine to encourage healing.

People with cancer are being offered more and more treatment options. We must also actively decide to bring spiritual perspectives and resources into play, not just to survive, but also to thrive.

♦ ♦ ♦ ♦ ♦

Rev. Dr. Steven Spidell is a board certified chaplain and executive director of Presbyterian Outreach to Patients in Houston, TX.

This article was published in Coping® with Cancer magazine, September/October 2012.

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New Website Assists Young Adults Wishing to Learn about Their Reproductive Options after Cancer




Treatment for certain diseases like cancer may affect your fertility. This means that it may not be possible for you to have a child naturally. A new website has just been launched to provide assistance to young patients wishing to learn about their reproductive options in the midst of a cancer diagnosis. Patients and their clinicians can go to the new Patient Navigator for Fertility Preservation website, which includes an interactive tool to provide information for males and females, before or after puberty, and before, during, or after cancer treatment.

Kristin Smith, the Oncofertility Consortium patient navigator for Fertility Preservation, is experienced at talking to survivors about the best reproductive options available to them at all stages of treatment. Now, through a new website, FertilityPreservation.Northwestern.edu, survivors can get her support, virtually.

A new website has just been launched to provide assistance to young patients wishing to learn about their reproductive options in the midst of a cancer diagnosis.

You can learn more about your options for family building and watch and listen to patient stories through links on the website that include:

What are my options?

• The decision tree can help you explore options for family building before, during and after treatment.

Personal Stories

• Stories shared are from actual patients who underwent fertility preservation.

Tutorials

• Egg and Embryo Banking
• Ovarian Tissue Cryopreservation
• Normal male Fertility
• Normal Female Fertility

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Kristin Smith, the Oncofertility Consortium patient navigator for Fertility Preservation, answers the national FERTline hotline at (312) 503-3378 (FERT). For more information, visit FertilityPreservation.Northwestern.edu.

This article was published in Coping® with Cancer magazine, September/October 2012.

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A Couple’s Guide to Facing Breast Cancer Together

by Susan Hedlund, MSW, LCSW, OSW-C



The diagnosis of cancer is a life crisis for anyone who hears those words: “you’ve got cancer.” The impact, however, extends beyond the person receiving the news. Cancer affects the whole family. For couples, there is a profound impact. The challenges that come with a cancer diagnosis, treatment, and recovery can be difficult and long lasting. The words “in sickness and in health” take on an entirely new meaning when cancer enters the picture. Still, most couples can and do get through the experience, and some report a renewed sense of closeness afterward.

Most couples establish ways of being together and communicating under optimal circumstances. Life crises, such as a cancer diagnosis, can disrupt and change everything, even for the healthiest of couples. Understanding one another’s perspective and learning new ways to communicate can help a couple through the cancer experience and strengthen the relationship for the future.

For the person who has cancer, and specifically for the woman with breast cancer, life changes immediately and dramatically. Initially, she may fear for her survival: Will I survive? Can I tolerate treatment? How will this change me? For her partner, feelings of helplessness, fear, sadness, and frustration may exist. The partner may also feel guilty for having their own needs and reactions to the situation.

Understanding one another’s perspective and learning new ways to communicate can help a couple through the cancer experience.



Susan Hedlund


The basic differences between men and women may also prove challenging as couples navigate the cancer experience. In general (and this may not be typical of all men and women), men are more connected to the facts and want to “do” something to take care of the people they love, especially their wives and families. When a man is unable to protect the woman he loves from cancer, he often feels helpless, frightened, and sad. He may feel his job is to “fix” or cheer up his partner, while his partner may long simply to be heard and supported.

On the other hand, most women are focused on connection with others and the experience of emotion. When her partner is silent, or attempts to “fix” what cannot be fixed, she may feel even more alone and misunderstood. Again, cancer can strain even the healthiest of relationships. It’s important to maintain faith in your relationship and in each other, and to allow yourselves time to adjust. As is true with most challenges for couples, communication is the key.

Having cancer is like being on a roller coaster, often forcing confrontation with mortality and a lack of control over some domains. For couples dealing with other stressors, such as strained finances, cancer may magnify previous problems while adding additional stress.

The onset of cancer can also challenge the physical boundaries of a couple’s relationship. During active treatment, the idea of sexual contact may be secondary to the stresses of managing side effects of treatment and recovery from surgery.

One way to deal with this is to use the COPE model. The COPE model, originally developed by Dr. Peter Houts and published in the book Home Care Guide for Cancer by the American College of Physicians, is a problem-solving model applied to all domains of the cancer experience. “COPE” represents four key steps to solving a problem: C for Creativity, O for Optimism, P for Planning, and E for Expert Information. Applying the COPE model to sexual intimacy, couples might consider first identifying the problem. For example, the question “How can we reconnect sexually?” may be a starting point.

Gathering information from your healthcare team or opening up the conversation with one another may also be helpful. Make a plan considering possibilities that are both optimistic and creative. While your intimate connection may need to change somewhat, it may open up a range of options that enhance your sense of closeness.

Many resources are available to help couples navigating cancer together. Couples may consider seeking the assistance of a counselor or other cancer professional to improve communication and find ways to cope effectively. Drawing on the support of family, friends, or other couples facing cancer may also be helpful. Don’t hesitate to seek support if you need it.

As always, communication is the central component in helping couples effectively overcome the numerous challenges that the cancer experience brings. It’s important to make room for one another’s reactions and styles of coping while also having open and honest dialogue with each other.

Try to maintain a sense of humor as well. Cancer isn’t funny, but life is, and laughter can help us regain some perspective through the greatest difficulties.

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Susan Hedlund has been a social worker in the healthcare field for 30 years and has extensive experience working with individuals and families facing life-threatening illness and loss. She is currently the manager of Patient and Family Support Services at the Knight Cancer Institute at Oregon Health & Science University in Portland, OR, and is on the faculty of the School of Medicine at OHSU, as well as the Graduate School of Social Work at Portland State University.

This article was published in Coping® with Cancer magazine, September/October 2012.

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The Benefits of Physical Activity for Cancer Survivors

by Jacqui Errico and Debbie Hughes



In June 2010, the American College of Sports Medicine changed its guidelines for people with cancer from recommending that bed rest is best to encouraging survivors to “avoid inactivity.” ACSM’s updated recommendation on exercise and physical activity for cancer survivors follows the U.S. Department of Health and Human Services’ 2008 Physical Activity Guidelines for Americans ( health.gov/paguidelines), with specific adaptations based on the disease.

These guidelines advise 150 minutes per week of moderate-intensity aerobic activity and at least two days per week of moderate-intensity muscle strengthening activities that involve all major muscle groups. This new mindset is a result of overwhelming scientific research suggesting exercise for a person living with cancer can improve everything from treatment-related fatigue to survivorship of the disease.

Anywhere from 60 percent to 100 percent of cancer survivors experience debilitating fatigue at some time during or after treatment. Studies show that survivors who engaged in an exercise program reported a significant reduction in treatment-related fatigue and indicated that as exercise duration increased, the intensity of fatigue decreased.

Cancer survivors who exercise regularly benefit with a positive boost in mood, lower rates of depression, and a better outlook on life.



Jacqui Errico and Debbie Hughes

In addition to fatigue, cancer survivors often experience depression, anxiety, and mood and emotional disturbances. Research has shown that cancer survivors who exercise regularly benefit with a positive boost in mood, lower rates of depression, and a better outlook on life. The Society of Behavioral Medicine recently presented a study concluding that exercise seems to be the key to helping women with breast cancer combat depression. Experts also found that the more regular exercise survivors got, the less depressed they felt.

Further benefits of exercise include reduced incidence of nausea (by as much as 50 percent), improved quality of life, higher tolerance to chemotherapy, improved sleep, increased self-esteem, and a decreased risk for osteoporosis. All of these benefits can be accomplished with as little as 10 minutes of exercise a day.

Exercise offers many more benefits than those mentioned, and with each study, proof is mounting that exercising during treatment is essential. Not only is exercise beneficial during treatment, but it also greatly increases survival after treatment. In 2005, JAMA, the Journal of the American Medical Association, stated that breast cancer survivors who exercised three to five hours a week experienced a 50-percent decrease in mortality rates. It is clear that maintaining an active lifestyle and healthy weight is essential for cancer survivors.

Prior to starting any exercise program (whether self-monitored or in a group setting), you should first get medical clearance from your doctor. Then proceed slowly and progress at a pace that fits your lifestyle. The goal is to “avoid inactivity” and to build up to the ACSM guidelines according to your ability.

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Jacqui Errico and Debbie Hughes, founders of the nonprofit organization Strength for Life, are certified cancer exercise specialists who offer free exercise classes to cancer survivors. Strength for Life also provides wellness retreats at no cost to cancer survivors. For more information about Strength for Life’s free exercise classes or wellness retreats, visit StrengthForLifeNY.org or call (631) 675-6513.

The American College of Sports Medicine’s guidelines can be found online at acsm.org by entering exercise guidelines for cancer survivors in the search bar.

This article was published in Coping® with Cancer magazine, September/October 2012.