About a year after Julie Silver, M.D., finished treatment for breast cancer, she was talking to one of her best friends, and started crying. The friend remarked, "I didn't realize this was still so hard for you. I thought you were all done. You always walk around with a smile on your face."
While the smile was sincere, Silver admits that most of the world didn't know how sick she really was.
"They didn't realize how long it was to recover," said Silver. "I thought a lot about how your outward appearance can look restored, but physically you can be tired, be in pain, and have problems with endurance. I thought, 'If I fooled one of my best friends, what must the rest of the world be thinking?'"
When Silver was in recovery from breast cancer, she was, like many, very ill. Her mobility was compromised, she was tired, nauseated and suffered from pain. Married, and a mother of three young children, the 36-year-old buffered the recovery with help from friends, family and neighbors. And a lot of self-knowledge.
In fact, Silver, a professor at Harvard Medical School and an expert on physical medicine and rehabilitation, knew she most likely had breast cancer before it was diagnosed in 2003. Suspecting there was an irregularity, it took three trips to a physician, and tests, to confirm it.
"I don't have an answer of how I knew," said Silver. "But people know a lot more about their bodies than doctors because they live in them. You are aware of subtle changes."
But most don't push for further tests. She advocated for her own care, and demanded answers. When the standard treatment subsided, she was sent home with little to no follow-up care. No rehabilitaiton.
Again, she knew something was wrong.
"Since I'm a rehab physician, I knew what to do," said Silver. "But even as a physician, I felt lost beacuse I was in so much pain, and I had to be my own advocate and direct my own healthcare team."
Had she suffered a heart attack, or a broken bone, she'd be in rehab. She'd have a plan that was coordinated with the hospital upon release. With cancer, she floundered alone. It's when she — inspired by a heart-to-heart discussion with neighbor and friend Diane Stokes — knew there was a major gap in the way cancer follow-up is, well, followed up.
Responding to the desperate need for cancer treatment rehab, Silver published After Cancer Treatment: Heal Faster, Better Stronger.
But the system needed more than a book. Now, the Northborough resident is one of the founders of Oncology Rehab Partners (also based in Northborough), an innovative healthcare company that trains and certifies medical facilities across the country as to how to integrate cancer rehab as part of a patient's treatment.
Stokes, her Northborough neighbor, worked in the high tech industry, and conducted sales and marketing business development. But she was also a triathalon and cycling coach, and helped cancer survivors complete their first triathalons.
"I saw how much better they felt after the eight to 12 weeks that I was training them," said Stokes. "I realized I really wanted to do something to give back in that area. I was talking to Julie one evening and brainstorming things, and talking about the exercise side of this. What is really needed, she said, is medical rehab."
First, Silver and Stokes put together a template of what they were going to provide. Talking to many hospitals across the country about their idea, it was met with "Yeah, we need it, but we didn't have anything to implement yet."
With an implementation model in place, they approached hospitals again and a hospital in Lynchburg, VA, was the first to test out the training and protocols.
It worked wonderfully, and now Oncology Rehab Partners offers four certifications in Survivorship Training and Rehab (STAR) for both individuals and institutions that provide cancer treatments. Now, Oncology Rehab Partners is aligned with several dozen hospitals throughout country.
"More and more are coming on board," said Silver. "The state of Rhode Island decided they were going to implement the STAR program and make this best practices care available to all survivors in Rhode Island."
Both Stokes and Silver agree that rehab is an intregal part of healing, and evidence supports that it improves the survival rate among cancer patients. Silver adds that there is a push from major health organizations to mandate that all accredited cancer centers offer cancer rehabiltation as part of its care.
"There is a saying in cancer that you need to accept a new normal," said Silver. "Well, that is saying to accept a lower level of functioning and higher level of disability. So, cancer survivors have begun to advocate and insist on better care."
Silver needs no proof that cancer rehabilitation is necessary, but both Stokes and Silver say the feedback from survivors has been tremendous. For them, it is validating and gratifying that the effects of this program is literally changing lives for people.
Recently, Silver received an email from a woman who heard of the STAR program. She lived in Florida, where a hospital had just launched it. The woman had been essentially disregarded after the basic cancer treatment from her doctor, so she sought after help from the STAR certified hospital in Juniper. She is now "shouting it from the rooftops."
"The program was six miles from her house," said Silver, "and she had been battling breast cancer for eight and a half years. We hear from a lot of people who are very grateful. When you help an individual cancer survivor, you are helping all the people around them who are counting on them, too."