Julie Silver, an assistant professor at Harvard Medical School, didn’t know how inadequate the field of cancer rehabilitation really was until she experienced it herself a decade ago.
That’s when her world — and the world of cancer rehab — started changing.
It wasn’t the diagnosis of breast cancer at age 38, or even the debilitating effects of the toxic chemotherapy and radiation, that really opened her eyes and charted her future course.
It was the absence of any rehabilitative support, and a lack of viable options, that she found so shocking when the oncologist sent her home to heal on her own.
“There was rehab for everything — except cancer,” said Silver, who already was in the field as a rehabilitation physician. “It was obvious; something needed to be done here.”
Silver has spent much of the last 10 years trying to make rehabilitation a standard part of cancer care for everyone. She has written books, given speeches, lobbied and changed attitudes, and even started a company called Oncology Rehab Partners that helps hospitals develop and implement programs.
“I think there has been significant progress made in cancer rehabilitation, particularly in recent years. But are we where it needs to be? The answer is `No, we are not,'” Silver told Asbestos.com. “We need to do a better job of treating cancer survivors early in the process. Studies still show that most cancer patients are not referred to rehabilitation services. That needs to change.”
Her call for action echoes a regular refrain heard from mesothelioma cancer survivors, who often return home from surgery or therapy at a medical center without a clear strategy on how to get better faster, and how to improve their quality of life.
Too often, pain medications have sent mesothelioma patients down the wrong path. Pain management and palliative care have a valuable place, but they can’t replace rehabilitation for cancer patients.
“Cancer rehab has not come as far as I would like, but we’re at least starting to see where the deficiencies are,” said Michael Stubblefield, M.D., chief of rehabilitation medical services at Memorial Sloan-Kettering Cancer Center in New York. “It’s better than it was a decade ago, but the field is just hitting its stride. Ten years from now, it will look very different.”
Stubblefield also has been a pioneer in a field just beginning to blossom. Sloan-Kettering has the most comprehensive cancer rehabilitation program in the country. Like Silver, he believes that continued growth will come only if patients are demanding it from the medical community.
Advances in cancer treatment have allowed patients to live considerably longer, turning many of the diseases into chronic illnesses, making rehabilitation more important than ever before. And as more and more cancer treatment is delivered on an outpatient basis, more patients are falling through the rehab cracks.
“It’s not just about living now. It’s about living well,” Stubblefield told Asbestos.com. “Quality of life has really become the mantra in cancer care. Cancer patients are the best rehab partners there are. Our job is to give them the highest functional quality of life as possible.”
Cancer rehab can be the difference between just surviving cancer and surviving to thrive again, returning to work and returning to a regular life. Rehab can focus on problems like fatigue, muscle weakness, numbness in hands and feet, unsteadiness and cognitive changes that often are experienced by cancer patients but ignored by oncologists.
Too often, big cancer centers don’t screen for functional problems that regularly plague cancer patients. They just aren’t staffed that way.
“There still are a very small number of us (doctors) doing this full time,” said Stubblefield, who wrote the first cancer rehabilitation textbook in 2009. “It’s just not a really well developed field yet in a lot of places. We have to change that.”
Silver wrote a book for survivors titled “After Cancer Treatment: Heal Faster, Better, Stronger.” She also wrote “You Can Heal Yourself, and What Helped Get Me Through.”
Her Oncology Rehab Partners started the Survivorship Training and Rehab Program (STAR), which is designed to teach rehabilitation professionals about the unique needs of cancer patients. It also helps oncologists better understand the problems facing cancer survivors, and how their patients can recover quicker after chemotherapy and radiation treatments.
Every cancer has different issues, requiring different rehabilitation expertise. Pulmonary rehabilitation is a major concern for mesothelioma cancer survivors, but it can be addressed effectively by a rehabilitation specialist.
Blood cancer patients may need therapy to help rebuild their strength and stamina. Colon cancer patients often are fighting back pain and abdominal swelling. Neck and head cancer patients may need work with speech and swallowing.
The STAR Program is about teaching customized cancer care, and now is being offered in all 50 states.
Echoing some of the same beliefs, the American College of Surgeon’s Commission recommended in 2011 that cancer programs in this country must offer rehabilitation programs to keep their accreditation.
“We just need to be more proactive in our cancer rehab,” Silver said. “We need to avoid the status quo, which often means waiting for a patient to complain. One of the great challenges now is screening patients appropriately; then fewer of them would be suffering from these physical problems.”
Would you be interested in participating in a rehabilitation program after undergoing cancer treatment? Why or why not? Let us know in the comments below or on Facebook.