Eleven years ago, personal trainer and fitness instructor Judy Cerrito was diagnosed with breast cancer. When she looked for an exercise program to help her overcome the pain, stiffness and other side effects of treatment, she could not find anything specifically for breast cancer survivors. So as soon as she was back to work at the YMCA of Greater Providence, Rhode Island, she created something herself.
Starting Over, an exercise program for breast cancer survivors, has since helped hundreds of women regain function and well-being. Cerrito also coordinates the LIVESTRONG program at the YMCA, a 12-week, small-group training program for men and women with all types of cancer. “As difficult as it was to hear the words ‘You have cancer,’ I feel I was given a gift,” Cerrito says. “I now understand what so many others are going through, and I’m in a position to help.”
This article reviews the evidence indicating how exercise can benefit cancer survivors, as well as many of the challenges specific to working with this population. You will learn how you can best support cancer survivors in finding an exercise program that meets their needs, or even get started on developing a program yourself.
This year, nearly 1.5 million Americans will hear those frightening words (Snowden 2009). Many more—1 in 2 men and 1 in 3 women—will receive a cancer diagnosis in their lifetime (Runowicz 2006). The good news: cancer is not a death sentence. For many of the most common forms of cancer—including breast, prostate and skin cancer—the 5-year survival rates following an early-stage diagnosis are close to 90% or higher (Ries et al. 2008).
As cancer survivors face the challenge of reclaiming their health, there is growing evidence that exercise can help. Unfortunately, most cancer survivors are not physically active. In a survey of more than 114,000 Canadian adults, fewer than 22% of cancer survivors exercise adequately (Courneya, Katzmarzyk & Bacon 2008). The statistics for Americans are equally dismal, with the majority of survivors not accumulating the recommended 150 minutes of
activity per week (Blanchard, Courneya & Stein 2008).
Nicole Culos-Reed, PhD, associate professor of kinesiology at the University of Calgary and founder of the Yoga Thrive program for cancer survivors, believes that fitness professionals can play a key role in supporting healthy lifestyle changes: “Cancer is a teachable moment and a wake-up call. It’s a real opportunity to help people change the behaviors we know are critical to survival.”
As more and more physicians recommend exercise, many cancer survivors, like Cerrito, will be looking for support from the fitness community. And many, again like Cerrito, will have trouble finding knowledgeable trainers who can work with them. “The worst thing that can happen is someone walks into a gym, says he has cancer, and the staff says, ‘Oh, we’re sorry,’” says Culos-Reed. “[People] don’t want you to be sorry—they want you to know what to do, how to keep it safe and how to work with them.”
Following the shock of diagnosis, one of the first things cancer patients want to know is: What can I do to make sure this disease doesn’t come back, and doesn’t kill me? According to Culos-Reed, who also conducts research on the benefits of exercise for cancer survivors, “Physical activity is the single largest modifiable risk factor we know of to prevent recurrence.”
A recent review in the British Journal of Sports Medicine identified nine studies showing that physical activity reduced the risk of death in cancer survivors (Irwin 2009). Most striking was the finding, across a number of studies, that 3 hours a week of moderate-intensity exercise was associated with a 50%–53% lower risk of death in breast cancer survivors and a 39%–59% lower risk of death in colon cancer survivors. Although other forms of cancer have not been studied sufficiently to draw strong conclusions, there is no reason to suspect that exercise would not benefit people with other types of cancer.
Living longer is a powerful motivator, but quality of life can be equally important. A recent national survey of more than 9,000 cancer survivors found that for all types of cancer, meeting the recommended guidelines for physical activity was associated with a higher health-related quality of life, including less pain, fewer difficulties completing daily tasks, better physical functioning and better general health (Blanchard, Courneya & Stein 2008).
Many exercise programs for cancer survivors recommend that participants wait until after surgery, chemotherapy or radiation to begin. However, a review of 22 studies found that exercise during cancer treatment could enhance immune-system and physical functioning and improve the following symptoms and side effects: anxiety, mood swings, depression, fatigue, difficulty sleeping, pain, nausea, muscle weakness, reduced bone mineral density and poor body composition (Knols et al. 2005).
Culos-Reed states that almost all oncologists now support starting physical activity as soon as patients are ready, including before or during treatment—something she says is a big change in medical opinion from even a decade ago. She recommends that patients get as much activity as they can during treatment, as long as they have clearance from their physician. This sometimes runs counter to patients’ instincts. “If they have physical side effects and fatigue, they think they have to protect the body. They don’t want to stress it, so they pull back and don’t engage.”
But the evidence suggests that appropriate exercise during treatment can restore energy, not deplete it. A recent meta-analysis of 28 studies—15 of which examined physical activity during treatment—found that exercise significantly improved fatigue in cancer survivors (Cramp & Daniel 2008). A wide variety of
exercise types, including cardiovascular exercise (e.g., walking, stationary cycling), strength training, flexibility training and yoga, helped boost energy.
Margaret Zuccotti, a 40-year-old mother of three with stage 4 breast cancer, is a perfect example of staying active during treatment. “Right from the beginning, running made chemo tolerable,” she says. “I ran or walked most days throughout my 7 months of weekly treatments, and felt like I was actively
going after my cancer in more ways than one.” Zuccotti has won the survivors’ division of the Philadelphia Susan G. Komen Race for the Cure 2 years in a row. “I am on Herceptin every 3 weeks from now until forever, but I run and compete to my heart’s content. Running helps me remember all that I am in addition to being a survivor.”
Zuccotti’s story points to another important benefit: exercise can give cancer survivors a sense of control and positive action. Doreen Puglisi, MS, founder and program director of the Pilates-based Pink Ribbon Program for breast cancer survivors, says, “This is
one thing they can choose to do that feels good to them.
All the other choices—chemo, surgery—they [also] have to make, but they don’t feel good. You do them because you want to survive. Exercise is the one thing that feels good both physically and mentally.”
Another key benefit of exercise programs for cancer survivors is social support. Cerrito agrees that the social component keeps people coming back to the Starting Over program. “It’s not a support group per se, but a supportive environment. The people in the program bond with each other because they have so much in common. People can take the program for one 8-week session, but many take it again and again, and several people have taken it for years. One woman’s doctor told her she’d be on chemo for the rest of her life. She was, but kept coming to class. When she got weaker, she just came to be with the supportive group.”
Working with cancer survivors requires a different mindset than working with a general population. Richard T. Cotton, MA, national director of certification for the American College of Sports Medicine, says, “If you always want your client to make progress and go further and faster, it doesn’t always happen, especially during treatment.” Sometimes a client’s abilities will improve, and sometimes they will decline. “So much has to be adjusted on the fly during the workout, and the exercise program will vary day to day.”
This is a lesson that Andrea Hall, coordinator of HOPE [Healing Through Optimism, Persistance and Exercise] Cancer Wellness at the Baptist Hospital in Nashville, Tennessee, learned from experience. “Initially, I tried to be too structured by having the 12-week plan all laid out. Not long after, I learned to create a program for the individual and take it week by week. If you have five women with breast cancer, they will have completely different health histories, emotions, personalities and backgrounds, and you will need to tailor their workouts accordingly.”
Cotton also points out that a trainer needs to think about different training outcomes when evaluating the program. “A trainer who is deeply invested in [muscle] sculpting, body composition, measuring tapes—that isn’t the best way to train a cancer survivor. A cancer trainer needs to be invested in quality of life,
fatigue, how the client feels 2 hours after the workout and the next morning.” Often, the training goal is simple: to feel better. Cancer survivors are not likely to be thrilled when they wake up the next morning too sore to move.
Puglisi, founder of the Pink Ribbon Program, agrees that this is the biggest difference when working with cancer survivors. “As personal trainers, we’re trained to motivate people to do things they might not want to do, and to push. With this population, there might be pain and real limitations. You have to be able to understand that this population has limitations, and it is not laziness.”
Working with survivors also means learning how to handle emotions when clients get sicker. Cerrito says, “It is heart-wrenching when they don’t do well, when they die, and you’re grieving. That is a component of this program. We talk to our staff about this, and we have made arrangements that they can call any one of us, or counselors, 24-7.”
The symptoms of cancer and side effects of its treatment are far-ranging (see the sidebar “Common Symptoms and Side Effects During Cancer Recovery”). They influence what clients are able to do safely and what they need from an exercise program. To work with cancer survivors in or recently out of treatment, you must learn about the symptoms and side effects, and how to address them.
Take, for example, lymphedema, a buildup of lymphatic fluid in the arms or legs that is a common side effect of radiation, chemotherapy or surgery. Exercise can help lymphedema but also make it worse, and precautions are necessary to avoid harming a client. According to the National Lymphedema Network (2008), aerobic exercise, gentle stretching, and slow, repetitive movements without extra resistance may be helpful for reducing
or preventing lymphedema. To avoid harm, a compression garment should be worn during exercise to prevent additional swelling. Clients should begin resistance exercise with a low load, and progress gradually, allowing adequate rest between sets. Aggressive stretching should be avoided.
In practice, these recommendations can look quite conservative. Cerrito says, “Instead of going on a machine with a minimum weight of 20 pounds, we start with 1-pound hand weights. If [clients] do well, maybe next week or so we’ll try 2-pound weights. If there are any adverse symptoms, such as pain, tingling or more swelling, then we back off.”
Another common side effect of chemotherapy is cognitive
impairment—what survivors call “chemo brain.” “Chemo brain really affects their memory and coordination skills,” says Hall. “They’re aware of it and will often joke about it or get really frustrated. I am very patient with them and try my best to make the workouts a positive experience.” Cerrito agrees that patience is key. “If you’re teaching someone how to use a particular type of equipment, you can’t expect them to remember how to use it during the next session. Maybe they will, but be ready to gently show them again.”
Fatigue, the most common side effect of cancer treatment, can be quite unlike the kind of tiredness most of us are familiar with. Laura Thatcher, MS, exercise physiologist for the Cancer Wellness Program at McConnell Heart Health Center in Columbus, Ohio, says, “During treatment, individuals have a different level of
fatigue. It is not the fatigue of ‘I had a hard day at work,’ but more like, ‘I am completely exhausted.’ You have to be aware that on certain days after their treatment, they may not be able to even come close to what they would normally do.” Her program helps survivors find their “new normal” and overcome any frustrations that arise if they cannot do as much as they could before the
diagnosis. “We remind them that they will get there eventually, but we have to gradually build up their stamina.”
Lymphedema, chemo brain and fatigue are just a few of the new challenges you will encounter when training cancer survivors. For this reason, it is important to familiarize yourself with the most common symptoms and side effects and to investigate the best practices for each.
Cancer Support Community
No program for cancer survivors can succeed without being connected to the local cancer support community. Puglisi, founder of the Pink Ribbon Program, advises, “Reach out to all cancer support groups. Ask to come and give a 10-minute class. Show them some seated exercises. Talk about how treatment can change the body, and how exercise can help them return to pretreatment function.”
Puglisi also encourages instructors to introduce themselves to medical professionals, such as radiation oncologists and plastic surgeons. “Many instructors feel uncomfortable reaching out to the medical community, but the key to a program’s success is networking. With this population, you can’t just put an ad in the paper.” She suggests making presentations, not just to physicians, but to anyone in a position to refer cancer survivors. For example, the patient-care coordinator at the plastic surgeon’s office may have more time than the doctor to discuss the benefits of postsurgery exercise.
According to Culos-Reed, an 8-week exercise program can be a big success, but “maintenance is a huge challenge.” There are many things you can do to support commitment. “Encourage [clients] to do the kind of exercise they want to do,” she recommends. “The doctor might say walking is good for you, but unless you enjoy it, it doesn’t matter, because you won’t do it.”
Culos-Reed also encourages clients to have a workout buddy and recruit the social support they need to make exercise a priority. For example, the Yoga Thrive program invites cancer survivors to bring a support person to class. Like survivors, caregivers are often exhausted and stressed out by the experience of cancer treatment. They can benefit from exercise while supporting the survivors in staying active—and with this support, survivors may be more likely to continue exercising after the program has ended.
The Yoga Thrive program also gives participants the tools they need to work out on their own. “We give them a DVD so they can work out after the program ends,” says Culos-Reed, “and we give them home-based equipment—like balls, bands and flashcards—so they can remember the poses despite chemo-brain fog.”
Cerrito stumbled on another solution to the maintenance problem when graduates of the LIVESTRONG program started showing up at the YMCA even after their 12-week session ended. They worked out alongside the current participants and offered them support. “It has spread to all of our branches. So many people finish the program, become members of the Y and join this graduate club. We hear over and over again that people in this program want to give back. Being in this graduate program and mentoring new people means giving back.”
If you are interested in working with cancer survivors, it may be easier to join an existing wellness or fitness program than to start your own. A program that is up and running may even provide or pay for your training. Find out what is available by searching online and contacting local cancer centers, wellness centers and gyms. Observe programs in your area. Attend more than one session to get a sense of how the trainer assesses clients’ needs on a daily basis and adapts a session to meet clients’ needs.
If a program is not available in your area, start connecting and looking for opportunities to collaborate. A fitness facility or cancer support center may be interested in sponsoring or hosting a program. Mention your goals to your existing client base—you might be surprised to discover who among them are cancer survivors or whose lives have been touched by cancer in other ways. These clients can give you feedback on your ideas and help connect you with organizations that could support your work.
Most important is your personal commitment to this population. As Thatcher says, “It really helps if you have a passion for it. These participants can see your passion, and they thrive off it.”