Kenyon alumni create a pioneering online library to help breast cancer patients cope with changed lives after treatment.
Story by Dennis Fiely
That question often troubles breast cancer patients after treatment. They are elated to be in remission, but they wonder what is in store for them as survivors.
“I never realized I would face so many issues after treatment,” said Sarah Van Oosterhout Shannon ’85 of Princeton, New Jersey. “I had a sense that having breast cancer was going to be a life-changing event, but I had no idea how deeply it would entrench itself. I am a different person than I was before.”
Shannon had a single mastectomy late in 2012, followed by nearly a year of chemotherapy. “I naively thought that once I got through treatment, this was going to be over,” she said. But the rigors of medication produced an array of changes, some undermining her sense of self. She contended with short-term memory loss and numbness in her fingers. There were alterations in her sense of taste. A sip of wine tasted like rubbing alcohol, and spicy foods set her tongue afire. “When my taste started coming back, I felt human again,” she said.
But the treatment also propelled her into early menopause. Even though she received her final medication infusion nearly a year ago, she still speaks about the complications accompanying recovery in the present tense. Early menopause “makes me feel older than I am, and my body functions differently since my surgery.”
Shannon is among more than 2.9 million people in the United States living with a history of breast cancer, having completed treatment or still undergoing it. Breast cancer survivors account for 21 percent of all cancer survivors, and their number — the most ever — is projected to grow at a rate of 80,000 per year over the next decade.
This trend has focused more attention on lifetime recovery, called “survivorship,” and on a key question: How can patients resume a fulfilling life after treatment has, in many cases, drained them physically and altered their self-image?
“We all know too many women whose lives are never the same after breast cancer,” said Rob Fisher ’79, an oncologist with Rocky Mountain Cancer Centers in Longmont, Colorado, near Denver. “In my career, I have seen many women fall into an emotional black hole as they attempted to gain a semblance of their lives back. Would the cancer soon recur? Could they be the mother, wife, relative, and professional they once were?”
Fisher and a fellow Kenyon graduate in the Denver area are making a difference in this increasingly significant realm. In 2012, he and Kelly Adams ’09 joined forces to create the Pink Ribbon Survivors Network (www.pinkribbonsurvivorsnetwork.org), a comprehensive online library of more than 1,500 articles and other resources dealing with physical, emotional, and psycho-social issues associated with breast cancer survivorship.
The site, which has drawn readers from 150 countries, offers hundreds of professionally vetted articles that address post-treatment topics such as self-image, relationships, finances, sexual health, diet, exercise, late side effects and surveillance.
Nearly 90 percent of respondents said they had at least one moderate to severe physical, psychological or social problem after treatment, according to a 2011 survey of 1,043 breast cancer patients by the nonprofit Cancer Support Community, headquartered in Washington, D.C."
One of Fisher’s breast cancer patients, Roberta Lozinski, joined the Pink Ribbon Survivors Network Board of Directors to help Fisher and Adams sift through the mass of Internet material. “I didn’t know what I should be reading,” said the fifty-two-year-old Colorado woman. “When I was invited to be part of this website, I was very excited because I knew the information was going to be current and overseen by an oncologist.”
Lozinski struggled with lingering treatment side effects such as weakness, fatigue, infections, and skin changes from radiation. Her “new normal” included relinquishing some household chores to her husband and modifying playtime with her grandchildren. She continues to have massages to loosen skin taut from radiation exposure nearly five years ago.
“This is not something you just walk away from after treatment,” she said. “I was always wondering if it is going to come back, what my diet and exercise should be, and how would it affect my relationships.”
Because information about the relatively new field of survivorship is vital for physicians as well as patients, the website divides material into three categories, one each for oncologists, primary care physicians, and survivors.
The creation of this new web resource was “a great story of Kenyon networking,” said Associate Provost and Professor of Sociology Jan Thomas, a specialist in health and gender issues who mentored Adams. “They [Fisher and Adams] weren’t even classmates.”
Fisher was working in Colorado when an email arrived from Adams in New York City, who was intrigued by a paper the oncologist had published about survivorship. The veteran physician immediately sensed that the recent Kenyon graduate was a kindred spirit.
“She was this precocious twenty-five-year-old with no background in medicine at all, but with all this tremendous fortitude and perseverance,” he recalled. “The fact that we had this Kenyon connection, combined with her sincerity, just struck a chord with me. We began a dialogue that opened an important chapter in my career outside my nine-to-five job.”
Unlike many people who get involved in advocacy, Adams had no personal experience with breast cancer. Her interest grew out of a summer internship in the survivorship program at Dana-Farber Cancer Center in Boston, near her hometown of Lexington, Massachusetts.
Under the tutelage of Thomas, the sociology major tackled the topic for her senior thesis. Her research included interviews with nearly two dozen breast cancer survivors about their post-treatment challenges.
“Working on that thesis was the highlight of my Kenyon career,” Adams said. “Survivorship was such a big issue for many of these people. I got to see the different ways they incorporated their cancer experience into new identities. Some saw themselves as warriors engaged in an ongoing struggle, while others wanted to forget it ever happened. Some had physical ailments that changed their roles as caregivers, wives, and mothers.
“Once their cancer cells were gone, they entered this new world of physical and mental issues. They faced treatment complications ranging from cardiac toxicity to glaucoma. Some had limbs removed. They even had to cope with little things such as how their sense of taste had changed.”
The interviews left a lasting impression on Adams, who remained passionate about helping breast cancer survivors while working as a paralegal in New York City. She found Fisher through the Kenyon Alumni Network. “I was looking for oncologists who had an interest in breast cancer survivorship and his name popped up,” Adams said. “I thought, ‘Oh well, that’s perfect.’ We were both Kenyon grads who shared this interest.
“I was surprised at how quickly he responded. He had daughters about my age, and I think our personalities were a good fit. The stars were aligned; I was lucky to find him. I often tell prospective Kenyon students the story of how we met.”
We both had other careers, but this is sort of a labor of love, something we do with our free time, which there is not a lot of."
Kelly Adams '09
Together, they hatched the idea of an online library and began meeting in Colorado, where Adams had moved to pursue a job prospect and change in lifestyle. Her technical expertise complemented Fisher’s medical background. “We both had other careers, but this is sort of a labor of love, something we do with our free time, which there is not a lot of,” said Adams, in her second year of law school at the University of Colorado.
The Kenyon connection deepened when the two founders brought Thomas onto the board of directors, along with New York City attorney Kristin Meister ’00.
Their effort has put them in the vanguard of a movement that is gathering momentum. Fisher has searched the medical literature and couldn’t find a single study about survivorship published before 2002. “When I started my career,” he said, “we were just glad people survived and patients should be lucky that they are living. The phrase ‘quality of life’ didn’t exist. Now survivorship is a very real topic of constant concern and of the utmost importance to professionals worldwide. How do women put their lives together again?”
Living, and thriving, with the scars
Kate Fonyo Pisano ’85 has been in remission for nearly three years, but she still sees her surgeon every year and has biannual appointments with her oncologist and for imaging. “I have a different check-up once a quarter and am always nervous until my doctor says he doesn’t see anything,” said Pisano, a patient liaison at Johns Hopkins Medical Imaging in Baltimore.
She suffers from occasional pain at the site of her surgery (a lumpectomy), worries about developing lymphedema, and works to resist weight gain, believed to be a side effect of hormone therapy. She lost her hair during chemotherapy, and, “it took two and a half years before I looked like myself again,” Pisano said.
Sarah Shannon, the wife of Lawrence Shannon ’85 and the mother of two teenagers, can relate. “I’d like to go a day without thinking about it, but it is just impossible given the physical and mental scars it leaves you with. You just can’t escape it. The drugs do their job, but it takes a long time for them to leave your system. The physical remnants lingered a lot longer than I thought they would.”
Lozinski had more questions after treatment than during it, because “in the beginning things were moving so quickly I didn’t have time to think. I was in a fog,” she said. Breast cancer changed her role at home and work. A business owner, mother of four, and grandmother of five, she had to learn to accept help. “It was very difficult for me to know that I couldn’t do it all anymore,” she said. “I still notice after I lift up my grandkids, my chest really hurts the next day. I am cautious about some of those kinds of activities.”
Pisano, the mother of two sons in college, received her diagnosis and went through chemotherapy shortly after a painful divorce. “I was newly single, nearly fifty, and bald,” she said. “I didn’t have another adult at home I could turn to. At night, I would be alone in the dark, crying.”
Kenyon friends helped sustain her through the ordeal. A resource like the Pink Ribbon Survivors Network, had it existed at the time, would have been invaluable.
The network is now looking toward the future. Fisher and Adams received a $10,000 technical assistance grant from the Susan B. Komen Foundation to help create the website, and local fundraisers provide some support. The founders’ goal is to expand the network to include other types of cancer and develop a survivorship curriculum that will help support groups, hospitals, and other health care organizations open programs.
Board member Lozinski is back in treatment after her cancer returned last summer. “I remember going to our website the first time, and I am looking at it again,” she said.
Shannon eats healthfully and exercises regularly, but she continues to battle memory problems and copes with some nerve dysfunction in her fingers. “I feel like I’m in better shape now than before I started treatment, but no matter how good I feel, I still wonder if it could come back.”
Pisano parlayed her experience into a new career: helping other women at Johns Hopkins. What now? “My oncologist said, ‘Go out and live your life.’ That set the tone of my recovery,” she said. “I prefer not to think of myself as surviving, but thriving. What is the point of living if you are not going to thrive?”
The death rate from breast cancer declined 34 percent between 1990 and 2011, translating into more than 200,000 averted deaths, according to figures released earlier this year. The five-year breast cancer survival rate for patients diagnosed between 2001 and 2007 is as follows: