LINDA WERTHEIMER, HOST:
More than 12 million people in the United States are living with cancer. Treatment often causes debilitating side-effects. Many people who suffer are told that nothing that can be done.
But as Rachel Gotbaum reports, rehab after treatment is being offered more often and can make a difference.
RACHEL GOTBAUM, BYLINE: At 38, Julie Silver was diagnosed with breast cancer. Her treatment included surgery and chemotherapy. Then she became very ill.
DR. JULIE SILVER: I was really, really sick. I mean sicker than I ever imagined. I did some exercise testing and I tested out as a woman in my 60s and I was in my 30s so I had aged three decades through cancer treatment.
GOTBAUM: Silver, who is an M.D. herself, says she was so fatigued and in so much pain after treatment that she went to her oncology team for help. They told her to go home and recover. But she says just as patients who've had a stroke need rehab therapy, so do patients who undergo toxic and invasive treatments for cancer.
SILVER: For example, a woman who has a mastectomy, she might have chemotherapy. She may have radiation therapy too. To reconstruct the breast she may have muscle transplant, so she is going to have a lot of scarring. She's going to have weakness. She'll probably be in a lot of pain. Lots of issues.
GOTBAUM: The issues are different for every type of cancer, for example people treated for head and neck cancer may need help speaking or swallowing. Blood cancer patients may need help rebuilding strength, and those treated for colon cancer may need rehab for back pain and abdominal swelling.
DR. REBECCA LANSKY: Patients are getting stuck and they don't know where to go.
GOTBAUM: That's Dr. Rebecca Lansky, a rehab specialist at the University of Massachusetts Medical Center.
LANSKY: I have a patient who had squamous cell carcinoma of the tongue, had radiation to the whole jaw and neck. And so he couldn't open up his mouth for six months and he basically kept going to his oncologist saying, how can I get better? What I can do? How can I get better? What I can do? And he finally got referred to me and so we're now opening up his jaw six months after he's been unable to move his jaw.
GOTBAUM: One study found that 90 percent of cancer patients should be referred to rehab, but only about one third are. There are signs that is beginning to change.
Dr. Julie Silver, who teaches at Harvard Medical School, created a program that provides rehab for cancer patients after treatment. It's called Star and is now offered in almost all 50 states.
JEN GOYETTE: You weren't sore?
DEBORAH LEONARD: No, surprisingly.
GOTBAUM: At South County Physical Therapy in Worcester Massachusetts physical therapist Jen Goyette greets her client, Deborah Leonard.
LEONARD: I was really swollen and puffy here. That's gone and it hasn't come back.
GOTBAUM: Two years ago, Leonard - who is 56 - was treated for early stage breast cancer. She had surgery to remove the small tumor, followed by several months of radiation. Soon after she finished treatment, Leonard realized something was wrong.
LEONARD: I had this lump inside my breast. And clearly, I didn't even have that before the surgery because the tumor was so small and it just getting bigger. In the morning I would start out fine, a little sore. By night time my breast was very swollen and extremely painful.
GOTBAUM: The lump was not cancer. Thinking it might be an infection, Leonard's doctors prescribed antibiotics. When that didn't work, they tried other invasive treatments - including surgery - but the problem quickly returned. And then Leonard discovered physical therapist Jen Goyette.
GOYETTE: All right. Well, come on up.
GOTBAUM: As Leonard lies on the table, Goyette places her hands gently on Leonard's shoulders. It doesn't look like much is happening.
GOYETTE: I'm doing manual lymphatic drainage. We're going in and clearing out routes so that we can have more lymphatic fluid go through those same routes.
GOTBAUM: Most health insurers cover rehab for cancer patients, says Goyette, but she must often fight with companies to get more than the average nine to 12 sessions reimbursed. Breast cancer survivor Deborah Leonard says cancer rehab is worth it.
LEONARD: I had a six-inch mass that is now down to half its size. I'm sleeping at night. I have energy again. More people need to know about this and more people need to use it, because you don't have to be a martyr and grin and bear it. This works.
GOTBAUM: Leonard says she just wishes she had known about cancer rehab sooner.
For NPR News, I'm Rachel Gotbaum in Boston.
WERTHEIMER: This piece was produced in partnership with Kaiser Health News.
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