October 2009 Issue
Life After Cancer — Survivors’ Care Following Treatment Is Vital to Maintaining Health
By Lindsey Getz
Vol. 11 No. 10 P. 34
With more patients winning the battle against the disease, it’s more important than ever to address their unique posttreatment needs and ensure they’re receiving the proper care.
There are 12 million cancer survivors living in the United States, about 2.4 million of whom are breast cancer survivors. As treatment becomes more advanced and scientists make new discoveries about the disease, these figures will likely rise.
We’re living in an age in which cancer no longer means a death sentence, but that fact alone has not led to better postcancer treatment. In fact, many survivors say they are receiving inadequate care following their cancer treatments. For breast cancer survivors, who have very specific medical needs due to heart problems, loss of lean muscle, and bone loss, effective postcancer care is crucial to maintaining health. Fortunately, by applying nutrition expertise and becoming knowledgeable about survivors’ specific needs, dietitians can greatly improve patients’ care.
The medical community has focused so much of its efforts on treating and finding a cure for cancer that when an individual survives the battle, he or she is often left in the dark as to what to do next. But as more patients emerge as survivors, it’s becoming increasingly important that attention be directed to their postcancer treatment. It’s a lesson that Diana Dyer, MS, RD, learned the hard way.
As a childhood cancer survivor, Dyer was acutely aware of doing what she could to protect her health, so she was already performing regular self-breast exams by her 30s. At the age of 34, she found a lump, which turned out to be malignant. “I had a mastectomy and went through chemotherapy and did the best I could do to put my blinders on and jump back into life,” she remembers. “I had babies to raise, a husband to care for, and a career.”
Ten years later, Dyer was still performing regular self-checks and having mammograms when the unthinkable happened. “I had literally planned my 10-year cancer-free anniversary party in my head when the radiologist at my annual mammogram appointment told me things didn’t look good,” she recalls. “I was immediately scheduled for a biopsy, which came back malignant. My doctors were pretty certain at that point that these two episodes of breast cancer were likely caused by the radiation therapy that was used to help cure my childhood cancer.”
After a second mastectomy and more chemotherapy, Dyer decided she needed to do something differently this time as she recovered from the second breast cancer diagnosis. “I started asking a lot of questions, thinking that the medical community would have all the answers for me,” she says. “I wanted to know, ‘What now? What do I do next?’ But nobody could tell me. There were no answers.”
Instead of giving up, Dyer viewed the information vacuum as both a personal and professional challenge. “If I couldn’t get answers as to what I should be doing to optimize my health and my odds for not only long-term survival but for quality of life, then I decided I would have to help myself,” she says. “And for me, as a dietitian, the answer started with food. I was not an oncology dietitian but instead just a regular dietitian who had cancer. In some ways, that was fortunate for my situation because it meant I had to start from scratch in figuring out how a nutrition plan could help nurture my recovery.”
While focusing on her own recovery, Dyer’s self-education on nutrition and cancer made her an interesting interviewee for a Detroit Free Press article and soon changed the direction of her career. When newspapers nationwide picked up the story, it became obvious just how many other survivors were asking the same questions as Dyer.
“I had been a dietitian working in critical care, tucked away in the ICUs of hospitals,” says Dyer, who is now known as the “Cancer RD.” “But this article put me in the national spotlight as a cancer survivor and dietitian who was using nutrition in her recovery. The article did not include my phone number, but more than 1,500 people from around the country tracked me down and called me after the article printed in 60 papers nationwide. Most were individuals who said they needed my help because they weren’t getting it at their cancer centers. They wanted to know what to do with their diets and how nutrition could optimize their health, but they weren’t getting answers.”
Today, Dyer is a national spokesperson, author, and advocate, focusing on helping patients receive nutrition education as part of true comprehensive cancer care. (See information below for wellness suggestions from a handout that Dyer created.)
Focusing on the Survivor
Due to the efforts of individuals such as Dyer, the “survivorship phase” of cancer is finally starting to get some much-needed recognition. In 2005, the Institute of Medicine emphasized the need for better postcancer treatment in its report “Lost in Transition.” And some cancer centers are forming survivor clinics that focus on the life-after-cancer phase. But many argue there’s still a long way to go.
A recent study published in the Journal of Clinical Oncology found that breast cancer patients gave low marks to the postcancer care they received from their primary care physician, who generally serves as patients’ main healthcare provider after they’re released from active treatment with their oncologists. In the study, which included 300 breast cancer survivors, patients reported being unsatisfied with their physician’s knowledge of the late effects of cancer therapies and ways to treat symptoms related to their disease or its treatment.
It’s important that dietitians understand cancer survivors’ specific needs. Dyer says the medical community has gotten so good at early detection and treatment that most breast cancer patients will likely die of something else—but that something else may very well be related to their cancer treatment. That’s why cancer nutrition should emphasize more than just cancer prevention, she says.
“Breast cancer patients have a greater risk of developing osteoporosis as a result of the drugs and hormone treatments used against their cancer,” Dyer explains. “Wouldn’t it be a horrible shame to die of complications from a broken hip after beating the cancer? The point is, it’s just as important for breast cancer survivors to focus on eating foods that will prevent the progression of bone loss as it is to focus on eating foods that will prevent the recurrence of cancer.”
Today’s treatments for breast cancer are aggressive and effective, but they can also take a toll on a patient’s body. Additional complications that can arise from breast cancer treatment include diabetes, a lower metabolic rate, weight gain, and heart disease, which is vital to know when devising a nutrition plan for survivors. Dyer cites the story of an acquaintance who incurred total heart failure and required a heart transplant—all a secondary cause of the therapy she had received for her breast cancer. “It’s an extreme example, but I tell that story because breast cancer survivors need to know they should be paying attention to these other issues instead of only focusing on the cancer,” says Dyer. “I like to say they should be wearing red for the heart campaign as often as they wear pink for breast cancer.”
Of course, that’s not to say that dietitians should not also promote a diet to help prevent the recurrence of cancer or the development of new cancer. Dyer simply emphasizes that it’s important not to focus solely on cancer, as there are many other issues a survivor brings to the table. She likes to stress the importance of overall health but does not dismiss the importance of cancer prevention, too.
A diet rich in antioxidants has been shown to help fight the development of cancer caused by free radicals, says Orville Bigelow, MS, RD, manager of nutrition services for Project Angel Food, a nonprofit organization that delivers freshly prepared, nutritious food to individuals facing HIV/AIDS, cancer, chronic obstructive pulmonary disease, congestive heart failure, end-stage renal disease, and other life-threatening conditions, in Los Angeles County. “Getting a wide range of whole fruits, whole vegetables, and whole grains can help supply the body with a wide range of cancer-fighting phytochemicals, the ‘plant chemicals’ which act as antioxidants.”
Bigelow says a grant from the Avon Foundation Breast Care Fund allows the organization to work with a lot of breast cancer patients and survivors who otherwise might not have access to vital nutritional care. “When counseling clients, we help them to understand how to eat for their condition and understand steps they can take to improve their overall health and reduce the risk of breast cancer reoccurrence,” he says. “We tailor our advice to meet the client’s individual nutritional needs; however, we always stress the importance of a plant-rich diet that is low in saturated and trans fats.”
Education for All
Despite better treatment, the risk of developing cancer is increasing. Dyer believes this fact and the fact that more people are surviving cancer make it important for all dietitians—whether or not they specialize in oncology—to be knowledgeable about nutrition for cancer survivors. “No matter what your area of specialty is, we all have friends, family, coworkers, and neighbors who have been dealt a cancer diagnosis, and they will look to us for helpful and reliable information on nutrition,” she says. “There’s a lot of misleading information out there, and we can be the ones to help steer that person straight.”
Dyer recommends that all dietitians consider joining the Oncology Nutrition Dietetic Practice Group (ON DPG, www.oncologynutrition.org) if there’s any chance a cancer survivor will come under their care. “I absolutely believe that every dietitian can benefit from this group, even if they only see the occasional cancer patient,” agrees Maureen B. Huhmann, DCN, RD, CSO, clinical dietitian with The Cancer Institute of New Jersey and the ON DPG’s chairperson. “We offer a lot of resources and are working on a lot of new projects that our members will find extremely valuable.”
One project currently under development is a series of Webinars that will help guide dietitians through the process of working with cancer patients and survivors. “We also have lectures planned on prevention, nutrition intervention, and survivorship and treatment-specific side effects,” says Huhmann.
In addition, field survivorship care plans are in the development and testing phase. This survivorship tool kit will be available through the American Dietetic Association and will include everything a dietitian would need to know to help a client through the survivorship phase of the seven most common cancer diagnoses, including breast cancer. The ON DPG hopes to make the kits available by the winter of 2010.
“These tool kits will include nutrition information for specific disease survivorship care plans,” says Huhmann. “They are tailored to each disease. For instance, with breast cancer, some patients may be treated with Herceptin for a specific tumor, but that can be associated with cardiac dysfunction. So the care plan would ensure that everything is being done to make sure that patient is eating a diet that will protect their heart.”
While the thought of working with cancer survivors and playing a crucial role in helping them maintain good health can be a little scary for some, it can also be incredibly rewarding to make a real difference in these survivors’ lives. Dyer’s own experiences with cancer have made it easy for patients to relate to her; however, she stresses that dietitians with or without a personal history of cancer can help their clients navigate their way through life after cancer. “First and foremost, hold their hand and tell them not to panic,” she advises. “After struggling to get answers, the most important thing that these patients want to hear is that there are strategies out there and that an action plan can be put into place.”
Dyer adds that life after cancer is a time for people to focus on overall health and wellness. “For many, a cancer diagnosis is an epiphany,” she says. “It becomes a teachable moment to take a serious look at everything in their life and determine whether it’s contributing to better health. It’s a chance for real change and an opportunity for dietitians to help their patients to not only make those changes but to stick with them for a healthier and longer life.”
— Lindsey Getz is a freelance writer based in Royersford, Pa.
Lifestyle Changes for Achieving Wholeness and Wellness After Cancer
The following suggestions have been learned through my personal experiences and put into the acronym “Help Myself.” However, they are not all inclusive nor in any particular order. I invite you to use some of them as a starting point to find your own unique recovery path to wholeness and wellness after your cancer diagnosis when you are ready to ask the question “What can I do?”
H — Help someone or some cause (ie, do something that adds meaning to your life)
E — Exercise daily doing something you love to do (move it!)
L — Learn to enjoy new whole foods (not processed foods or “junk”) and new recipes
P — Plant a garden (even a small one) to increase your intake of plants plus exercise
M — Meditate or learn some other form of stress management
Y — Yield gently to the changes in life. Although some are frightening, many can open doors to newfound opportunities, health, and wellness
S — Size down the portions of most foods
E — Enjoy more water and green tea
L — Lose weight (if needed) very gradually
F — Find an RD to be an advisor and cheerleader for recovery
Some recommended resources for cancer and nutrition information and recipes:
• The American Institute for Cancer Research: www.aicr.org
• Suzanne Dixon, MPH, MS, RD: www.CancerNutritionInfo.com
• Diana Dyer, MS, RD: www.CancerRD.com
• A Dietitian’s Cancer Story: Information for Recovery and Healing by Diana Dyer, MS, RD (also available in Spanish)
• Food for Thought: Healing Foods to Savor by Sheila Kealey, Vicky Newman, and Susan Faerber
• The Cancer Lifeline Cookbook — Good Nutrition, Recipes, and Resources to Optimize the Lives of People Living With Cancer by Kimberly Mathai, RD, and Ginny Smith
• Doyle C, Kushi LH, Byers T, et al. Nutrition and physical activity during and after cancer treatment: An American Cancer Society guide for informed choices. CA Cancer J Clin. 2006;56(6):323-353.— Both sidebars Diana Dyer, MS, RD. Web site: www.CancerRD.com. Blogs: www.dianadyer.com, www.365DaysofKale.com, www.cancervictorygardens.blogspot.com. © 2009. Permission granted to reprint.