It was her own experience with debilitating side effects after cancer treatment that led Dr. Julie Silver to realize that there is a huge gap in care that keeps cancer patients from getting the rehabilitation services that could help them.
Silver was 38 in 2003 when she was diagnosed with breast cancer. Even though she is a physician, she was shocked at the toll chemotherapy and radiation took on her body. Silver was dealing with extreme fatigue, weakness and pain.
"I was really, really sick — sicker than I ever imagined," says Silver, who is an assistant professor at Harvard Medical School. "I did some exercise testing and I tested out as a woman in my 60s. So I had aged three decades in a matter of months through cancer treatment."
Silver went to her oncology team for help. They told her to go home and heal. "The conversation should have been, 'We're going send you to cancer rehab to help you get stronger,' " she says. But that's not what happened, and after Silver came to realize that her experience was typical, she set out to change the system for other patients.
In 2009 she started a program designed to offer cancer survivors rehabilitation therapy after treatment. It's called STAR — for Survivorship Training and Rehab — and is now offered in nearly all U.S. states. The program is growing, as is research showing that many of the quality-of-life problems cancer survivors have are physical and can be helped with rehab.
Physical therapist Jennifer Goyette is a STAR-trained therapist who works with cancer patients in Westborough, Mass.
"I've seen cases where someone has had a lot of pain, and they've done scans and it's not a malignancy. And maybe they have done exploratory surgery to see what is happening and not really finding much except a lot of scar tissue," says Goyette. "I am able to get a lot of relief and a lot of times patients don't need to have further intervention. They don't want to be on the narcotics for the pain management. They would rather come here."
One of Goyette's clients is 56-year-old cancer survivor Deborah Leonard. For two years after her treatment for early stage breast cancer, Leonard had swelling, pain and a large mass in her breast — which was not cancer.
"Clearly I didn't have that before the surgery because the tumor was so small and this was much bigger, and it just kept getting bigger," says Leonard. "By nighttime my breast was extremely swollen and very painful."
At first doctors thought Leonard might have an infection and gave her antibiotics. When that didn't work they did another surgery to remove scar tissue. But the problem returned. Her doctors were suggesting a third surgery when Leonard finally found Goyette.
After three sessions with Goyette doing what is called lymphatic drainage, Leonard felt much better. Goyette uses manual pressure to clear Leonard's lymphatic system, allowing the buildup of fluid causing Leonard's pain and swelling to subside.
"I had a 6-inch mass that is now down to half its size," says Leonard. "I'm sleeping at night. I have energy again. More people need to know about this because you don't have to be a martyr and grin and bear it. This works."
The issues are different for every type of cancer: Head and neck cancer patients may need swallowing and speech therapy. Blood cancer patients may need therapy similar to cardiac rehab to rebuild their strength and stamina. Patients treated for colon cancer can get help from physical therapists with back pain and abdominal swelling.
Most insurers do cover rehab for cancer patients, but sometimes patients must battle to get more than the standard nine to 12 sessions.
Another barrier to care is that too few oncologists and cancer surgeons refer their patients to rehab.
The Commission on Cancer, the arm of the American College of Surgeons that accredits cancer programs in U.S. hospitals, however, recently announced new requirements aimed at improving care for survivors of cancer, including better access to rehabilitation therapy.
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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WERTHEIMER: This is MORNING EDITION from NPR News. Transcript provided by NPR, Copyright NPR.