Sandra Wade, a Florida social worker, was diagnosed with an incurable form of breast cancer a decade ago. Two surgeries and years of chemotherapy left Wade, 61, with a damaged heart, chronic swelling in her left arm, spinal arthritis, nerve damage and fatigue, among other problems. “They didn’t send me home well,” she says. “They sent me home sicker than I began.”
Survivors of strokes, heart attacks and traumatic injuries routinely get rehabilitation to improve their strength, energy and functioning. For cancer patients, it’s a rarity. It wasn’t always this way. “We used to have better cancer rehabilitation than we do now,” says Dr. Catherine Alfano, a program director at the Office of Cancer Survivorship at the National Cancer Institute. Before the 1980s, when most cancer treatment involved long hospital stays, survivors would get rehab before being discharged. As treatments improved and outpatient care became more common, Alfano says, “those programs kind of disappeared to a large extent.”
Now the medical world is recognizing that the 12 million cancer survivors in the U.S. can benefit from more comprehensive rehab. Six years ago the Institute of Medicine called for giving every survivor a “care plan” to manage the lasting consequences of treatment, and this year the American College of Surgeons made such post-treatment attention to quality of life a requirement for its 1,500 accredited hospitals. Dr. Julie Silver, a Harvard Medical School rehab physician who survived breast cancer herself, is one of the pioneers trying to make rehabilitation a standard part of cancer care.
Silver co-founded Oncology Rehab Partners in 2009 to help hospitals and rehab centers tailor rehab programs to cancer patients. “There’s rehab for everything,” she says, “except cancer.” Silver and her business partner Diane Stokes developed a program to certify cancer rehab that has been adopted by dozens of institutions, including Johns Hopkins Hospital, over the past two years. The Survivorship Training and Rehab program, or STAR, offers online training to oncologists, primary care doctors, nurses, therapists and other practitioners, as well as nonmedical staff such as social workers and administrators. In October, several hospitals and rehab clinics in Rhode Island jointly got certified in the STAR program in an effort to make its certified rehab available across the state.
The STAR program’s goal is to teach doctors how rehab can help cancer patients and to teach rehab professionals about the unique needs of cancer survivors. After training, Oncology Rehab Partners helps health care providers create systems for referring, evaluating and rehabilitating cancer survivors.
Today, many doctors send cancer patients to fitness classes, yoga or massage therapists to soothe the effects of treatment. Unlike rehab, such nonmedical care isn’t generally covered by insurance. Silver says many survivors need more customized help, including physical, occupational and speech therapy, to regain their abilities and transition back into work and family life.
For example, many survivors of head and neck cancers stop driving because they have difficulty turning their heads. Physical therapy can improve their neck motion, allowing them to drive again and, often, to go back to work. Others may have trouble speaking or swallowing that speech therapy can relieve. Oncologists may not recognize their needs, however. “People are told this is your new normal, accept this,” Silver says, “when in fact that may not be their new normal if they had appropriate rehabilitation services.”
Institutions pay $10,000 to $44,000 for certification. (Individuals, such as solo physical therapists, can also get certified for $2,000.) Over time, Oncology Rehab Partners will measure the programs’ success by looking at patient satisfaction and improvements as part of a recertification process that will cost $5,000 to $10,000. The seven-employee company, based in Northborough, Mass., expects revenue of more than $2 million in 2012, up from about $500,000 this year, says Stokes.
Physical therapist Sherry Spencer Brown was part of a 15-person team that brought the STAR program to Hawthorn Medical Associates, a 75-doctor practice in North Dartmouth, Mass. The training helped Brown learn more about the consequences of chemo and radiation, while her colleagues in Hawthorn’s cancer center learned how rehab could help survivors recover after treatment. “We all came from a different perspective and different clinical strengths and got to learn about other areas that we’re not as well-versed in,” says Brown.
Silver developed the STAR program after her own breast cancer treatment in 2003 left her too weak to go back to work. She got her strength back over two years, drawing on her own expertise as a rehab physician and working with a personal trainer. The experience awakened her to the problem many cancer survivors face: After debilitating treatment, they have no road back to anything like the life they knew before being diagnosed.
The health system “literally drops people off as medical refugees to navigate this labyrinth on their own,” says Rebecca Kirch, director of quality of life and survivorship at the American Cancer Society. Doctors are so focused on curing the disease that patients’ pain and the effects of chemo and other treatments take a back seat. “There’s very little training in medical school and beyond that addresses the symptoms, the side effects, the late effects [that can manifest years after treatment] and the rehabilitation needs,” she says.
Even at top-rated cancer centers, comprehensive rehab is a relatively new focus. At Memorial Sloan-Kettering Cancer Center in New York, rehabilitation until 10 years ago largely centered around lymphedema, or swelling of the limbs that’s a common result of breast cancer treatment, says Dr. Michael Stubblefield, the center’s chief of rehabilitation medicine. In the decade since, Sloan-Kettering’s outpatient rehab team has grown from two therapists to 18, and its focus has broadened. Still, most big hospitals don’t have a doctor like Stubblefield in charge of cancer rehab. “There’s still a very small number of us who are really doing this full time,” he says.
Wade, the Florida social worker, never got a rehab referral from her oncologist. Instead, after seeing an ad in her local paper, she began a STAR-certified cancer rehabilitation program at Jupiter Medical Center, a few miles from her North Palm Beach home. Physical therapists helped reduce the swelling in her arm and worked on exercises to improve her strength and steady her gait. Now, Wade says, “for the first time in many, many years, I can go up and down a flight of stairs without losing my breath.”
She says she hopes to become well enough to work a few hours a day next year. She’s devoting her energy to advocating for better quality-of-life care, including rehab, for people with cancer. “There’s too many chronically ill cancer patients that are suffering unnecessarily,” she says.