Paying it Forward: Trials Can Improve Life for Future Cancer Survivors



 By participating in survivorship clinical trials, those who have weathered cancer can improve quality of life — not just for themselves, but for future survivors. 

There is a difference between survivor trials and clinical trials that involve the testing of new medications. The former are designed to find ways to treat the symptoms that linger after cancer and its treatment, the latter to treat the disease itself. However, both follow a protocol, which is often a randomized trial, with a control group that uses standard methods versus a group that participates in the strategy being evaluated — in the case of survivor trials, often exercises, psychological counseling or medical strategies to alleviate the long-term side effects of treatment.

Alternatively, sometimes medical therapies may be involved that can address physical or psychological symptoms. “Many patients are open to considering trials involving quality-of-life and survivorship, particularly as cure rates improve,” Starmer says.

The trials have yielded important results. In one study cited by Starmer, patients who started preventive exercises before treatment for head and neck cancers had less difficulty in swallowing after radiation therapy. Those who didn’t start an exercise program until after radiation had poorer results. “It changed our entire approach, and we now recommend exercises from the onset for every head and neck patient,” Starmer says.

In survivors of all kinds of cancers, one of the biggest fears is of recurrence, and this can cause distress. In one 2011 study of women successfully treated for breast cancer with surgery, 14 percent reported depression and symptoms of post-traumatic stress disorder (PTSD) 15 months after treatment – a condition often associated with war or major trauma, but also increasingly recognized in cancer patients. Cognitive problems related to cancer treatments, often referred to as “chemo brain,” as well as neuropathy (numbness and tingling in the extremities), lymphedema (swelling in the limbs), hot flashes, premature menopause, insomnia and fatigue can also dog patients.

“Through a randomized clinical trial last year on chemo brain using a cognitive rehabilitation intervention, we’ve found that breast cancer patients who attended the two-hour-per-week, five-week program led by a neuropsychologist and did memory and attention exercises at home saw significant improvement compared to patients in the waitlist control group who were not given the instructions,” says breast oncologist Patricia Ganz, director of the Center for Cancer Prevention and Control Research at the Jonsson Comprehensive Cancer Center at UCLA. “When all the assessments were done, survivors in the control group were also offered the intervention program. With this level of evidence, we can now refer patients for clinical interventions such as this that help them recover their cognitive function after treatment.”

Other clinical trials conducted at UCLA found that severely fatigued breast cancer survivors who participated in yoga classes twice a week for 12 weeks had significant improvement in that symptom compared to women receiving health education as a comparison. In another study, Tai Chi Chih was effective for management of insomnia in breast cancer survivors, even when begun several years after their initial treatment. Many other trials to improve symptom outcomes with physical therapy and integrative medicine approaches are being conducted in centers around the world.

At Memorial Sloan Kettering Cancer Center in New York, one trial is looking at different methods of assessing heart damage in women treated with Herceptin (trastuzumab) for breast cancer in hopes of identifying and managing patients to avoid long-term problems. Another is studying whether a device that emits electrical stimulation, implanted in the lower back, can help patients control their bowel movements following surgery for rectal cancer. Yet another is considering whether a non-estrogenic moisturizer can relieve vaginal dryness in survivors of postmenopausal, hormone receptor-positive breast cancer.

Participating is something patients can do for themselves — and for others who will someday walk the same path. “There is always some altruism involved in clinical research studies,” Ganz says.


The optimal time for patients to get involved is early on. The sooner the buy-in, the better the outcome, but according to Ganz, no matter where patients are in their cancer journeys, there are research opportunities available. Even for eager participants, trials are not always easy to find. Physicians and clinicians get caught up in cancer treatments and sometimes fail to let patients know about the availability of these programs. Therefore, for survivors who are interested, it’s essential to be proactive. Talk to oncologists about survivorship and quality-of-life goals, and ask about survivor trials immediately after diagnosis. If looking that far ahead doesn’t seem achievable in the face of a diagnosis and treatment decisions, patients can try again later, asking their oncologists to include survivor clinical trials in their survivorship plans.

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