No hospital sends a stroke patient home without a detailed plan to help them regain as much of their normal functioning as possible. Yet cancer patients are routinely released with no guidance on how to deal with the impairments that may linger after their treatment is done. “A lot of cancer survivors feel ditched after treatment,” says Catherine Alfano, deputy director of the Office of Cancer Survivorship at the National Cancer Institute.
Research shows that cancer rehabilitation can help people reduce disability and improve their functioning, yet too few cancer survivors get such care, says Julie Silver, a physician and associate professor at Harvard Medical School. She encountered the problem herself after undergoing rigorous treatment for breast cancer in 2003. Afterward, she felt abandoned.
Recognizing an unmet need, Silver launched the Survivorship, Training and Rehab program. STAR helps hospitals and other health-care facilities develop cancer rehabilitation programs that coordinate care among diverse providers. The programs are tailored to each person and their cancer, whether it’s breast, lung, prostate or something else.
Cancer patients should seek out such programs even before beginning treatment. (Ask your doctor for a referral.) Among hospitals in the area, Inova Alexandria Hospital, MedStar Washington Hospital Center and Georgetown Hospital System have their own programs, and the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins has a STAR-certified program.
Many lifesaving cancer treatments can cause debilitating effects, says Kevin Oeffinger, a physician at New York’s Memorial Sloan-Kettering Cancer Center and chair of the American Society of Clinical Oncology’s survivorship committee. Common post-treatment problems include “chemo brain,” pain, fatigue, muscle impairment and anxiety.
In most cases, these problems can be addressed with physical or occupational therapy, cognitive behavioral therapy, diet and exercise, Silver says. For instance, most head and neck patients stop driving during treatment, and many never resume driving, because they can’t turn their necks. Physical therapy and a targeted exercise program can help them regain neck strength and range of motion, Silver says. “It can give someone their mobility back, and that’s huge.”
Lymphedema — swelling caused by blockages in the lymph system — often occurs in breast cancer survivors who have had lymph nodes damaged or removed during treatment, Oeffinger says, but physical therapy and targeted strength exercises can usually help. Some types of chemotherapy can affect heart or lung function, but a carefully designed exercise program can allow survivors to rebuild their strength and resume their normal activity levels, he says. But to regain such functionality, patients need individualized guidance and programs, not just instructions to go to the gym, he says.
Ideally, a cancer rehabilitation programs should bring together oncologists, physical therapists, dietitians and psychiatrists to help a survivor build a coordinated, individualized plan for regaining normal function. “The coordination aspect is really important,” Alfano says. “What we have right now is completely fragmented care. You go to this physical therapist, and that person doesn’t talk to the oncologist, who doesn’t talk to your psychiatrist.”
Rehab care should address everything, from pain to anxiety, that might prevent someone from living a full and productive life, she says.
STAR programs aim to get survivors back to doing the things they could do before their cancer diagnosis, Silver says. The work often begins with “prehabilitation,” which aims to help patients prepare physically and emotionally for treatment. For someone with head and neck cancer, that might include exercises to strengthen swallowing muscles and range-of-motion exercises, Silver says. During prehab, a patient might also learn to deal with the psychological aspects of treatment and receive guidance for coordinating caregiving.
“Rehabilitation programs are probably the single most underappreciated service among cancer survivors right now,” Oeffinger says, because many survivors just don’t know about them. Unless a doctor initiates a referral, many patients don’t know to ask, he says. But word is starting to spread.
The American College of Surgeons’ Commission on Cancer requires its accredited cancer programs to offer rehabilitation services. There are more than 100 STAR-certified programs across the country (You can locate programs at www.
Ideally, cancer rehabilitation should start with a prehabilitation program to prepare you for treatment, Silver says. But if you’ve already missed that opportunity, don’t despair: It’s never too late to benefit from rehab.
“Don’t accept a new normal before you’ve been offered a cancer rehabilitation program,” Silver says. “You may be accepting more pain, fatigue and disability than you need to.”