Dr. Julie Silver, 38 and the mother of three young children, was diagnosed with breast cancer in 2003. She survived surgery and chemotherapy and was sent home cancer free. But life-saving treatments took a devastating toll her psychological and physical health.
"I felt really good in the beginning, but just terrible at the end of treatment," said Silver, a physiatrist and professor of physical medicine and rehabilitation at Harvard Medical School.
"I had too many symptoms to list. I was weak and in pain almost constantly," she said. "My day was pretty relentless with 24/7 mom's duties."
Silver, now 47, knew how to help others heal, but with a rotator cuff impingement, chemotherapy-induced peripheral neuropathy and cancer-related fatigue, she could hardly do it for herself.
"I couldn't step out of the world with cancer," she said. "I had to deal with life now and it was impossible to do that. I knew how to rehabilitate myself, but it was just so hard."
Unlike others who have suffered major illnesses and injuries, the 13 million cancer survivors in the U.S. are typically told by their doctors to get back to living after finishing their toxic treatments.
But surgery, chemotherapy, radiation and immunotherapy can be debilitating. They can keep people from jumping into life again.
"If a patient had a stroke, you would never tell him them, 'This is your new normal -- if you want to get better, figure it out on your own," said Silver.
So she co-founded the Star Program Certification, an evidence-based model of cancer rehab offered in hospitals in 40 states. Two states, Rhode Island in 2011 and Massachusetts in 2012, have launched the first statewide initiatives so any cancer survivor can find treatment close to home.
Silver and businesswoman Diane Stokes began Oncology Rehab Partners in 2009, which certifies health care professionals to address the physical and emotional problems of recovering cancer patients, building individualized rehabilitation plans.
The Star program has been endorsed by the American Cancer Society and receives financial support from several charitable groups, including the Gloria Gemma Breast Cancer Resource Foundation in Rhode Island and the Friends of Mel Foundation in Massachusetts.
Cancer rehabilitation with licensed professionals is covered by Medicare and most insurance plans, according to Silver.
Cancer survivors can face myriad ailments: pain, fatigue, weakness, immobility, cognitive impairment, sleep difficulties, sexual dysfunction, anxiety and depression. Treatments tend to occur consecutively or simultaneously, which contributes to the development of impairments.
Carolyn Spring of Westboro, Mass., lost the use of her left arm after surgeons took out 18 lymph nodes, followed by chemotherapy and radiation when she was diagnosed with breast cancer in 2008.
At her sixth-month check-up, her oncologist sent her on her way, warning her not to go easy on that arm or she might develop lympodemia, which can lead to dangerous infections.
"He told me not to lift more than 10 or 15 pounds for the rest of my life on that arm," said Spring, 54, an estate-planning lawyer. "I just thought it was a fact of life, that I would no longer be able to use that arm. But I was just happy to be alive."
"I was in a lot of pain," said Spring, who found she was unable even to lift her briefcase, carry a light grocery bag or hold her dog's leash.
But after struggling for a year, she sat with Diane Stokes at a Rotary Club meeting and learned about Star Program Certification and cancer rehab. "Wow," said Spring. "I had no idea what it was."
Stokes arranged a meeting with her colleague Silver, who immediately diagnosed Spring with a frozen shoulder. And she said cancer rehab could help.
Spring started on the road to recovery in the Star program at South County Physical Therapy to strengthen her disabled arm.
"My shoulder is not frozen anymore," said Spring. "I still go to [physical therapy], but it's like night and day … I have use of my arm. I go out gardening and walk the dog. I am still careful, but I don't have to be as cautious and I have good range of motion."
Medical rehabilitation programs emerged after World War II when injured soldiers came home and needed help functioning again. Now rehab doctors treat those who have been in car accidents, had strokes, or have spinal cord injuries.
Silver sees cancer rehabilitation as just as vital to a survivors' emotional wellbeing.
Research shows that most head and neck cancer survivors stop driving after treatment because they cannot turn their heads well and see oncoming traffic.
"It's an incredible source of disability for them," she said. "They are not going out to work -- it's very restrictive."
Silver said they can be helped through injections and physical therapy to increase the range of motion in the neck.
"A lot of times patients have become very frustrated and depressed and the psychological, not the physical is treated," she said. "But the physical is so much a factor in their symptoms. Who would not be depressed if they could not drive?"
Star has also begun a new program in "prehabilitation," offering patients therapy before they begin cancer treatments so they are physically healthy and emotionally ready.
"While they are waiting for chemotherapy, we use the window of time to get them prepared for what they are going to undergo," she said. "Offering them prehab is like giving them an umbrella before the storm."
Silver said her own struggle made her realize how important it was to help others. She did not get a diagnosis for two years, after finding an irregularity while breastfeeding her youngest child. It took three work-ups to determine it was cancer.
"I had excellent oncology care, but had to rehabilitate myself," she said.
After toxic treatments, she was forced to quit work for a year but still keep up with raising her children, then 3, 7 and10. At her worst moment, she sat in the emergency room with her daughter, who had an allergy to eggs and had been exposed.
"I had just had another dose of chemo and I remember trying to stabilize her condition and being sick myself," said Silver. "I was sitting there thinking, 'I cannot believe I am so sick myself and my daughter is so sick, and we are just fighting to stay alive.'"
Had she been able to access the Star program, Silver said, "There would have been experts there to help me that I could trust. That would have been a huge weight off my shoulders."
Professionals might have offered help with her pain levels, overall strength, reducing her fatigue and giving her better range of motion in Silver's arm.
Despite her slow recovery, Silver said she feels "terrific" today and has raised her children well. Her son Alex, now 19, and daughter Emily, 16, have written about their family's struggle with cancer in a "Chicken Soup for the Soul" book, "Hope and Healing for Your Breast Cancer."
"I am not the same as I was before cancer, but I have worked really hard on my health and have tried to heal as well as possible," she said. "I feel strong."