This year, an estimated 178,480 cases of invasive breast cancer and 62,030 cases of non-invasive breast cancer (that is, breast cancer that has not spread beyond the breast ducts to surrounding tissue) will be diagnosed across the country. While this may sound dire, there is plenty of good news to go around, especially for women living here in the Northeast. We live in an area that some call the country’s medical Mecca; here, breast cancer treatment is on the cutting edge medically and in a host of other ways.
Dr. Lidia Schapira, staff oncologist at the Gillette Center for Breast Oncology at the Massachusetts General Hospital, describes how breast (and other) cancer care has changed over the last two decades or so. It now encompasses, she explains, quality-of-life standards shaped not only by public demand, but also by professionals who recognize that non-medical issues are an integral part of every cancer patient’s experience. “A new paradigm for cancer care is here to stay,” Schapira says firmly, “and it calls for a multi-disciplinary approach to treatment.”
Schapira adds that she is constantly surprised by the number of her patients who volunteer back into the breast cancer community once they are well. Why? Is there a connection between their willingness to volunteer and the new paradigm for quality-of-life-oriented care? Schapira thinks so. “Cancer care now really involves helping patients to cope. This means facilitating their emotional and psychological adaptation to their illness and treatment, helping them to navigate job and insurance issues, exploring the changes that some of their relationships will inevitably undergo, and aiding them in the existential and spiritual journeys on which they may well embark as the result of their experience. The treatment team does much more now than just look at blood counts. They focus on the total person.”
From the patient’s side, nurses, medical assistants, physicians, and others who have survived breast cancer and who now work as volunteers in the breast cancer community, all work to provide care that touches the patient differently, and far more deeply, than ever before. Schapira says, “As a result of receiving kindnesses big and small, and of their having been through an emotionally intense, life-changing event, I think there is a kind of generative force.”
In our community, this generative force results in an outpouring of volunteerism among the survivors of breast cancer, who pass along to others the hard-won fruits of their experience.
Then and Now
Sheila Heller lives in Wellesley, and was diagnosed with breast cancer in the late 1980s. “There weren’t a lot of people to talk with about what was happening to us then,” she remembers. “Cancer was called The Big C. It certainly was not something that people were comfortable talking about.”
Survivors say that the baby boomers are changing that; they’re more empowered, better informed, and in many cases, more willing to talk about their experiences. This willingness enables some survivors to help pave the way for newly-diagnosed women, easing their transition into the world of cancer treatment and then, into their forever changed, post-treatment lives.
“When I was diagnosed, I couldn’t find anyone to talk to about what was happening to me, except by chance or through word-of-mouth,” she says. With that in mind, Sheila got involved with the Patient-to-Patient, Heart-to-Heart program two years after she was diagnosed, and at its inception.
“Patient-to-Patient, Heart-to-Heart is for all survivors, with a range of cancers and experiences,” explains Hester Hill Schnipper, Chief of Oncology Social Work at the Beth Israel/Deaconess Medical Center, who helped start the program. The program enables survivor-volunteers to talk with patients as they are being treated [infused with chemotherapy drugs] on the hematology-oncology unit.
“In the beginning,” recalls Sheila, “we took phone calls, and we were just flooded with calls from people who had no one to talk to. Sometimes they didn’t feel as if they could use their real names because they were fearful about job security. There’s much more openness now.”
Sheila describes her current role. “Our slogan is ‘you are not alone.’ We try to make it easier for patients to navigate the cancer world. It’s wonderful and meaningful for me to give back, and to help those who need now what I needed, and wished I had then. A diagnosis of breast cancer, or any cancer for that matter, brings up a lot of fear and stress. Talking with someone who’s been there can really alter that. Patients ask: ‘What clothing will I be able to wear after my mastectomy? What do I say when a certain person or a relative says this or that to me?’ You’re the voice of experience, because you’ve been a patient, too.”
One newly-diagnosed patient, the mother of two preschoolers, talks about how grateful she is for the Patient-to-Patient, Heart-to-Heart program and others like it. “Talking with survivors is inspiring,” she explains. “It’s like the pep talk you get from a good coach before an important game, where the odds might be against you. Survivors can provide so many practical tips and suggestions on the tough parts of cancer treatment.”
Sheila says that working on the unit isn’t always easy. “Our group of volunteers provides support for one another. Sometimes one of us really needs to get away for a few minutes to take a deep breath, or get a new idea. We’re there to help each other personally too because, of course, each of us has her own ongoing health issues. There are benefits to all of us. You always get back so much more than you give.”
“I prefer that we be called success stories rather than survivors,” says Marcia Boyle, relaxing on her Wellesley deck, surrounded by containers of flowers. Marcia explains how getting breast cancer was a profound and life-changing experience. “You join a club. You develop relationships that you didn’t have before. You connect to people who have been through the same thing. And you find out that life doesn’t stop when you have it.”
“Most—maybe all—people are afraid when they’re first diagnosed, but you don’t want to live your whole life like that,” she points out. “Breast cancer is one that’s very manageable, in light of some other cancers. In my house, we talked a lot when I was diagnosed. My kids say that my having had cancer when they were young has made them stronger now.”
“Sure, you’re angry for awhile,” Marcia continues. “It’s human nature to want to feel good all the time. But you find ways to cope. For me, fundraising has become an important and tangible way that I can help others. Answering questions about my experience is another.”
Currently, Marcia and her family are raising money for Hope Lodge, a 44-room facility under the auspices of the American Cancer Society (ACS) in the Longwood area of Brookline. When it is completed, Hope Lodge will provide a free place to stay and support services for patients and their caregivers who travel long distances for cancer treatments in Boston.
What motivates Marcia’s almost constant dedication to fundraising on behalf of cancer patients? “I can be a resource to the community, just as others were—so importantly—there for me.”
Abbé Litvack is a Weston parent who is also a cancer epidemiologist at the Dana Farber Cancer Institute. Designated by the ACS as a Pacesetter (that is, someone who individually raises over $2,000 at the organization’s annual Making Strides walk), Abbé describes why she’s passionate about fundraising.
“I first walked when my sister was diagnosed, nine years ago,” says Abbé. “Then I was diagnosed in 2003, and five months after my mastectomy, I chose to do the walk again with family and friends.” Like Marcia, Abbé’s fundraising efforts are not just about her. “It was really good for my children, who had seen me sick, to see so many other people there with their ‘survivor’ tags on and to realize…Mom’s not going anywhere.”
“Almost everyone knows what I’ve been through, or knows someone else—a friend or a relative—who’s had breast cancer. Fundraising for Making Strides is a personal goal for me, but really, it doesn’t take much for others to set their own goals, or to help a friend or family member,” she points out. “Drive someone to chemo, make a meal, write a check, or stuff envelopes. And of course, funding is always tight and really needed at all of the research centers in our area.” Her advice? “Choose to do something that’s meaningful to you, and it’ll be easy.”
Abbé sheds some personal and professional light on the term survivor. “I think it harkens back to a day when the survival rate was much lower than it is now. Since the fatality rate was so high, if you survived, you were one of the few; you were a real novelty. Today it’s very different. As ‘survivors,’ we are the majority! And because there are so many of us, much more attention gets paid to our quality of life. Now the whole patient gets treated, not just the disease.”
Surviving and Thriving
Wellesley resident Carie Capossela also feels that quality-of-life issues are critically important. “We are so much more than survivors,” insists Carie. “We’re thrivers!”
“Treatments have gotten so good, certainly with the earlier-stage cancers, that some of the biggest issues involve our needs before, during and after treatment. I was only 33 years old when I was diagnosed, and I wanted to be with other young women who shared the same issues, worries, and concerns that I had. And six years later, I still feel that way.”
At the time of her diagnosis, Carie’s children, Brennan and Sari, were ages one and three. Once she was finished with active treatment, Carie and a group of young, suburban “breast cancer friends” brainstormed, and Thrive Together, a nonprofit organization devoted to providing breast cancer support, services, and education to their unique peer group, became a reality. Carie recalls that although their backgrounds were similar, they all brought different points of view to the group. She points out that the bright green logo for Thrive Together symbolizes the rebirth and renewal that many women feel after treatment. Carie wants Thrive Together to be “the go-to breast cancer resource for young women in the greater Boston area.” Why an organization so specific to young women? Women in their 20s, 30s, and 40s are dating, just getting married, and having children, so the treatment protocols recommended for them are different than for others. Questions like “is chemotherapy going to send me into menopause now?” need to be addressed well ahead of treatment.
Like their older counterparts, young women need significant amounts of information regarding the quality of their post-treatment lives, but for them, complex topics such as fertility and sexuality must also be included. Carie points out that “issues like egg-harvesting are huge for us.”
Carie also serves on the steering committee for the Program for Young Women with Breast Cancer at the Dana Farber Cancer Institute. This program coordinates and integrates cancer care for young women, and offers them the option to participate in research initiatives targeted to their age group.
Like Marcia, Abbé, and countless other survivors, “I spend hours on the phone,” Carie says. “Talking to someone who has lived through breast cancer is different. It’s safe. You can ask her anything, and she can walk you through it, break it down, and make it easier.”
Carie says that many women ask what to tell their children, and how. “In fact, children take their cues from you,” she says, obviously speaking from the depths of her experience. “If you treat your hair loss like it’s the end of the world, they will probably treat it the same way. You can be a model to help them view and cope with your illness in a positive way. If they ask you a question, ask them one back, so that you can find out what they really want to know! The most important thing for your kids to realize is that yes, you’re going to be okay.”
Why Volunteer? And Just as Important, Why Not?
For many women, volunteering within the breast cancer community serves both therapeutic and philanthropic ends. Schapira looks at it this way: “There’s a desire to make meaning out of their own ordeal and use it to help construct something better for others. When I ask past patients if they will participate in a clinical trial—perhaps testing a new prophylactic drug (one that may prevent future cancers) or a new protocol for the maintenance of remission—their response is often one of joy. Many say ‘of course I’ll do something to help future patients.’
Such an opportunity allows them to renew their bonds with members of the medical establishment who have helped them. It also enables them to continue processing their own cancer experience.”
There are, however, many survivors who choose not to be so involved. “It may bring them back to a place they don’t want to go,” Carie points out. “They may not want to be labeled as ‘the woman who has [or had] breast cancer.’ It’s risky. You really put yourself out there. Who knows? You might get close to someone whose cancer returns, and what will that stir up for you?”
Hester Hill Schnipper lists some good reasons why many women prefer not to bring their breast cancer history up at every turn. “Many women want to move away from their cancer as soon as they are able. They may become upset when they talk to others about it. Some survivors are intent on not defining themselves by breast cancer; they don’t want constantly to be reminded of it. Some feel that keeping their cancer alive will be hard on their families. Many people are by nature very private, and their cancer is part of their own very personal history and experience.”
It’s clear that each person’s approach is
as unique as she is. But for those who choose to volunteer back into the breast cancer community, and to share their experiences and expertise, there can be some lasting, and very personal payoffs.