Head and neck cancer survivor PAULA EINAUDI would like all survivors to have access to rehabilitation services after their treatment ends. - PHOTO BY LAUREN SHEINTAL

In 1997 Paula Einaudi served as the development director for the Johns Hopkins University School of Nursing in Baltimore where she met with donors, held events and garnered corporate support for the school.

As a swimmer and a runner, she says she was “smug” when her dentist found a lump in her neck and suggested she have it checked out. But good health didn’t deter the diagnosis of cancer.

“The primary site was the base of my tongue,” she adds. “Two days later I underwent neck dissection to remove the cancerous secondary site, including 22 lymph nodes. Then I started 35 radiation treatments, which just about did me in.”

Einaudi had a hard time accepting that the surgery and treatment made her look as though she had had a stroke. "I had no smile on the right side; I couldn’t open my mouth very far, and had a scar from my Adam’s apple to halfway up my ear. I also couldn’t raise my arm.”

Helping her through treatment and aftermath was a friend from college, Lynn Gerber, the chief of the Rehabilitation Medicine Department at the Clinical Center, National Institutes of Health in Bethesda, Maryland.

It was a fortuitous friendship since Gerber probably knew more about cancer rehabilitation than most anyone in the country after participating in cancer research at the National Institutes of Health (NIH) for more than 20 years at that point. Indeed, when she started calling physical therapists who could provide therapy to Einaudi closer to her home in Columbia, Maryland, she finally found someone eager to learn and more than willing to follow her directions about which exercises would help.

Einaudi says neither her surgeon nor radiation oncologist talked about rehabilitation. She says when she brought it up with her surgeon, he just looked at her and said, “We would have gotten around to that.”

By 1997, Gerber had already been at the NIH for two decades working with experts on functional outcomes when the new surgeries and chemotherapy were introduced. Gerber says rehabilitation, which aims to promote or restore function and to prevent functional decline, is likely to make an important impact on function during and after cancer treatment, says Gerber, who today continues her research in the College of Health and Human Services at George Mason University in Fairfax, Virginia.

No one would argue that cancer rehabilitation has made progress since Einaudi’s diagnosis, but not nearly enough, according to those in the field and the patients they help. As with any new recommendation in the medical world, particularly one where equipment and a new specialty is required, there has to be a mountain of research to inform doctors about effectiveness and provide guidelines based on data. This will promote effective treatment and support reimbursement and, hopefully, encourage more health professionals to gain expertise in the practice of cancer rehabilitation. The medical profession and the insurance companies have still not totally accepted the role for rehabilitation, even today.

Part of that challenge, says Lynne Padgett, strategic director of the Hospital System for the American Cancer Society, is that people still think of cancer rehabilitation as just managing lymphedema, the swelling that may occur after an axillary dissection for mastectomy.

“It goes far beyond that to include things such as the ability to walk and occupational functioning such as managing daily tasks,” she says. Padgett works with 11 divisions, prioritizing and providing resources for effective treatment and follow up.

“I think the reason we are not moving faster is that the doctors and patients during treatment are focused on cure, they want to know what to do to get rid of the cancer,” she says. So, ironically, doing well with new treatment options has resulted in increasing numbers of patients. “Now we are starting to see the limitations, as patients are ready to move on and just accept the pain, or whatever the challenge is, as part of life.” The other piece is that providers have a lack of awareness that they can make a difference in functional level, helping patients return to what they need and wish to do in their lives because they don’t discuss it, and patients don’t know how to ask or tell them what it is they need.

Padgett tells the story of a woman who was successfully treated for early-stage breast cancer.

“She traveled for work, and over time, her impaired range of motion in her shoulder began to impair her ability to drag a suitcase and put it in the overhead. She wrote it off as the new normal after cancer,” Padgett says. “A business colleague recommended rehabilitation, and she saw an occupational therapist who improved her range of motion and helped her resume her responsibilities.” It was an irritation that had a significant impact on her quality of life, and it speaks to the physical functioning of everyday life, Padgett says. “They are willing to see it [physical impairments] as the price they pay for being cured,” she says.

Over the past decade, the importance of rehabilitation has grown due to the expectations of patients and medical professionals that quality of life will be taken into by consideration by accrediting groups. It is now listed among the services that must be made available by cancer centers accredited by the American College of Surgeons’ Commission on Cancer, which accredits more than 1,500 cancer programs in the United States and Puerto Rico. But what constitutes a cancer rehabilitation program have not yet been specified.

In addition, the National Comprehensive Cancer Network’s guidelines say “rehabilitation should begin with a cancer diagnosis and should continue even after cancer treatment ends” to lessen fatigue, identified as one of the most common symptoms reported by survivors.

The most comprehensive rehabilitation approach, the STAR Program, was created by Julie Silver, today an associate professor at Harvard Medical School in the Department of Physical Medicine and Rehabilitation and the associate chair for strategic initiatives at Spaulding Rehabilitation Hospital. The program allows for evaluation after treatment to triage patients to the appropriate rehabilitation, whether it’s physical, occupational or another therapy.

Silver and her team created the STAR Program in response to her own rehabilitation needs after a diagnosis of breast cancer in 2003. It is designed to guide hospitals, cancer centers and health care facilities through the process of developing and implementing a multidisciplinary oncology rehabilitation service line focused on four key outcomes categories: Access to Care, Patient Function, Patient Satisfaction and Clinician Education. Today, the program can be found in 200 hospitals, many of which are underutilized.

“The challenge is still that physicians are not telling patients that the services are available, that they can be assessed for impairment and triaged to the medical care they need, including rehabilitation,” Silver says, adding that this means the vast majority of patients and survivors are still undertreated for deficits common to cancer.

At one point in the interview with Paula Einaudi, she asked if this story would be negative about her doctors for not recommending rehabilitation. She didn’t want to be at all negative about the doctors who she saw as saving her life, repeating a concern that speaks to why more patients don’t bring needs pertaining to function and overall well-being or complain to their physicians when they discover on their own how helpful rehab is to them. Patient communication could go far in helping physicians change their attitudes. “Throughout my ordeal, Lynn was my lifebuoy,” Einaudi says.

“She lifted my spirits, gave me advice about food and exercise, and suggested the key questions for me to ask my doctors. Without those questions, in fact, I am not sure I would have gotten the physical therapy that was so critical to my rehabilitation. “I don’t want to sound ungrateful. I just never got the impression that they cared about rehab at all.”

But despite all the requirements, patients still don’t know what is out there and whether they need rehab, Padgett says. “They don’t have any kind of systematic way to understand, and even if they did, patients wouldn’t know.”

The Institute of Medicine has defined four “pillars” of survivorship care:

2. Intervention for treatment consequence and late effects

3. Prevention of recurrence, new cancers, late effects and comorbidities where possible

4. Coordination of care between primary care, oncology and other specialists.

Comprehensive cancer rehabilitation delivered using a multidisciplinary team is an essential component of survivorship care that addresses these four pillars. Patients should have these discussions early on as the treatment plan is being formulated.

Silver says most cancer patients will benefit from rehabilitation. The challenge is communicating that information and then finding a way to engage the physicians so they will look at the options and find a way to provide the care in the right way. “The most important thing for survivors to understand is that they deserve the opportunity to function optimally no matter their cancer. Part of that is receiving excellent cancer rehab services that are covered by medical insurance and involve rehabilitation professionals.”

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“The most important thing for survivors to understand is that they deserve the opportunity to function optimally no matter their cancer.”

Rehabilitating Cancer Care

Figure skater Scott Hamilton is perhaps best known for his signature backflip—a difficult move that few others can execute on ice.

But while the Olympic gold medalist has spent much of his career turning himself upside down, he now aims to turn cancer upside down. After losing his mother to breast cancer in 1977 and surviving his own battle with testicular cancer in 1997, Hamilton started the Scott Hamilton CARES Foundation, which is dedicated to funding world-class research and quality care to improve cancer survivorship. The logo for his foundation, an upside down ribbon, is a nod to his backflip and, more importantly, his goal to reverse the trajectory of cancer.

“I want to get enough information out there so when people are diagnosed with cancer, they can educate themselves and find out what is going on and not just be scared that they are going to die. I want people to know how to get treatment in the best way possible, not just the first way possible.”

Hamilton shared these guiding principles for his advocacy work and commitment to innovation at a recent launch event for Hengrui Therapeutics, where he was keynote speaker. Hengrui Therapeutics, a new Princeton-based biopharmaceutical company, is developing and commercializing oncology agents.

“We need to try and get behind people that have great ideas to make it better for the next person,” he said. “As a patient and a survivor, it is the greatest feeling in the world to know that there are innovative people that want to change the world and save lives.”

Hamilton is also responsible for the 4th Angel Mentoring Program, which brings patients together with survivors of the same cancer, and ChemoCare.com, a resource for those undergoing chemotherapy. He is working to expand the use of proton therapy, a type of radiation treatment that uses protons rather than traditional radiation to treat cancer. Construction of the first Scott Hamilton Proton Therapy Center is expected to start this summer in Franklin, Tennessee, where Hamilton currently resides.

Hamilton has always been determined to overcome adversity. As a young child, he spontaneously stopped growing, his stomach became ascended and he lost muscle development. He spent four years in and out of hospitals, but doctors could not determine what was wrong with him.

It was ice skating that finally helped him to heal.

“One day I decided to go ice skating, and I found something that I really love to do,” said Hamilton. “I practiced and practiced and pretty soon I was skating as well as the well kids, even though I was still very sick. Then I was skating as well as the best athletes. I started to get better. Whatever the disease was it went away, and I started growing again; it was miraculous.”

It wasn’t until years later in 2004, after Hamilton had already beaten testicular cancer, that he was diagnosed with a benign, non-cancerous pituitary brain tumor thought to be linked to his childhood illness. He has since recovered following radiation and hormone replacement therapy.

From the moment Hamilton stepped on the ice, his parents supported his passion for figure skating, and despite their limited teachers’ salaries, paid for him to pursue it.

But the sport became too much of a luxury when his mom received her breast cancer diagnosis. Hamilton was 17 years old when his parents told him they would only be able to pay for him to skate for one more year. Hamilton, who was very close with his mother, understood completely.

“Up until that point, I was a habitual loser,” said Hamilton. “In my first National Championship, I fell five times and came in last. The next year, I came in last again. When my mother told me I had to quit skating, I was okay with stopping.”

But with the pressure off, something changed for Hamilton. With his mother sitting in the stands, her left breast recently removed and her head covered in a wig to hide her chemotherapy-induced baldness, Hamilton won the Junior National title.

The win caught the attention of Helen and Frank McLoraine, a wealthy couple that ran a figure skating scholarship program. They decided to sponsor his career going forward and paid for him to be coached by Carlo Fassi, the same man who coached Dorothy Hamill.

Finishing high school, Hamilton got an apartment and was on his own for the first time in his life. The newfound independence caused him to lose focus, he said, and he came in ninth place in his first competition at the senior level.

Unfortunately, that was the last time Hamilton’s mother saw him skate, as she lost her battle with cancer shortly after. It was her death that pushed Hamilton to get back on track in his career.

“When she died, I didn’t know how I could do any of this without her,” said Hamilton. “But then I realized that I could just bring her with me wherever I went. I could live for her and be accountable to her and be the person she always thought I could be. From then on, everything changed.”

Just a few short years later, Hamilton qualified for the 1980 Olympics, where he was chosen to carry the U.S. flag in the opening ceremony and came in fifth. In 1984, he went back again, this time winning the gold medal.

It would be almost 20 years exactly after his mother passed that Hamilton would face his own battle with testicular cancer. At first, when he got the diagnosis he was terrified.

“This was the disease that took my Mom from me and now I had it,” he said.

But he quickly drew inspiration from his mother’s positive attitude. “I remembered my mom, who used to say ‘oh this chemotherapy is fine, I’ve always hated my hair and these wigs are so much easier’,” he said. “I remember how her prosthetic breast would pop out at the dinner table and we’d play hot potato with it to get it back to her and laugh with her.”

He decided then and there that he wasn’t going to take his cancer too seriously. At the Cleveland Clinic where he was treated, he told the doctors and nurses they weren’t allowed in his room unless they could make him laugh. So the nurses decorated his chemotherapy bags with stickers and cracked jokes as they administered his treatment.

“They treated me like an 8-year-old and it was awesome,” said Hamilton.

But as much as he wanted to, it wasn’t always easy to keep a positive attitude. “There was a feeling of betrayal, that my body betrayed me,” said Hamilton. “You lose a little bit of momentum because you just don’t know why your body did this.”

Desperate to understand, Hamilton went online to search for more information about the chemotherapy he was receiving. But the information he found wasn’t any help.

“It was written with 12-syllable words, sometimes three to a sentence,” he said. “That information wasn’t for me; it was for other physicians. It was medical journal language. I wanted to understand what my body was doing.”

The challenge inspired him to create Chemocare.com. The site includes information on each chemotherapy drug, its acronym and what it does, common side effects and how to manage them, exercise and nutrition information for patients undergoing chemotherapy, and much more. The site is written in simple language,, eighth-grade level English and Spanish, so that it is accessible to everyone. His goal was to get 3 million visits per year; today Chemocare. com sees 3 million visits per month and is rapidly growing.

In addition to the physical challenge of undergoing chemotherapy, Hamilton also struggled with the emotional challenges fighting cancer can bring.

“There is an isolation people feel,” he said. “I was the only one I knew that was going through cancer. That was tough. I thought, there needs to be someone to talk with people about this.” He created the 4th Angel Mentoring Program around the idea that every patient with cancer already has three angels in their life: their oncologist, their oncology nurse and their friends and family.

“There needed to be a 4th angel. The 4th angel is someone who has been there done that, has survived and is on the other side,” said Hamilton. “They can be your life coach and your role model. They are where you want to be.”

So far, patients have been linked with a survivor who has undergone the same cancer and treatment regimen that they have. The program is expanding so much that they may consider creating an algorithm to more efficiently match mentors/ mentees, said Hamilton.

The Scott Hamilton CARES Foundation also continues to expand. There are currently 820 trained and active patient/caregiver mentors, matching more than 100 requests each month. The foundation is currently focusing on initiatives that further early detection, immunotherapy and proton therapy. Hamilton is inspired by treatments that focus on killing the cancer with minimal impact on the rest of the body.

“I am here because of chemotherapy. I am grateful. But the statistics show that 20 years out, things start to happen; the late effects,” he said. “We need to raise the bar on cancer treatment options that are designed to specifically go after the cancer without destroying the rest of the body.”

Hamilton feels proton therapy is one technology that can achieve that goal. His Scott Hamilton Proton Therapy Center, a $109-million not-for-profit center developed with Provision Trust, Inc., will be open to all qualified and properly credentialed radiation oncologists, regardless of hospital affiliation. He hopes to open similar centers nationwide and to work with insurance companies to cover the service, as few currently do.

“I get frustrated that new technologies, new options and new ideas, are kind of getting squished by the status quo,” said Hamilton. “I feel like I need to do something about that.”

As a society, we need to make it easier for patients and their families to access the resources they need to understand and fight their cancer in the best way possible, said Hamilton. That is what he hopes to do with all of his initiatives.

“The more I learn, the more I know I need to learn, and the more I experience, the more I really want to roll up my sleeves and get to work,” said Hamilton. “The cancer community is really underserved. There are a lot of foundations out there, but we need to change the conversation. That is part of what we are trying to do. We want to align with people and raise an army. Let’s raise the bar.”

After losing his mother to breast cancer and then fighting testicular cancer himself, Olympic gold medalist Scott Hamilton started a foundation to help those touched by the disease.

Summer 2016 | Heal

Rehabilitating Cancer Care

Survivor and Gold Medalist Scott Hamilton Works to Raise the Bar of Cancer Treatment

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