The Many Meanings of "Survivorship"
The phrase “cancer survivor” entered our vernacular in 1985, in a poignant essay in the New England Journal of Medicine. The author, Dr. Fitzhugh Mullan, wrote of his own cancer, a mediastinal seminoma, and what it was like for cancer patients to pass through what he called “the seasons of survival.” Dr. Mullan stated, “Survival…begins at the point of diagnosis because that is the time when cancer patients are forced to confront their own mortality and begin to make adjustments that will be part of their immediate, and to some extent, long-term future.”
He went on to found an advocacy group, the National Coalition for Cancer Survivorship, which defines “survivor” as anyone who has had a cancer diagnosis. Among people who fit this definition, some embrace the term “survivor” wholeheartedly, while others reject it out of hand. Lifeline spoke with several women who have been diagnosed with breast cancer about what being a survivor means to them.
“I’m on the fence about the term,” says Michelle Palmer, 50, of Irvine, Calif. She was diagnosed in July 2004 and underwent a lumpectomy, then opted for a double mastectomy, chemotherapy and reconstruction. “Sometimes it seems to have a negative connotation, in that I’ve gone beyond the label. But then, it puts me in a sisterhood of women who support, encourage and love me.
“It’s been a hell of a journey from diagnosis to completing treatment,” Michelle adds. “I feel a sense of pride and victory at coming through to the other side. So when I introduce myself to people, I’m open about being a survivor because I want women to know it can happen.”
“I like the term survivor,” says Cathleen Battiste-Presutti, 37, of Columbus, Ohio. “I took it on for myself the day I learned I had cancer.” That occurred in 2004, after she found a lump during a breast self-exam in the shower. And while Cathleen initially was diagnosed at stage I, subsequent testing revealed liver metastases.
“So I went from stage I to IV,” she recalls. “Surgery was ruled out because of the mets, so I underwent strong chemo and then hormonal therapy. And there’s been no sign of the disease since.
“I was determined to do whatever it took to fight this disease,” she says. “I wanted to live, so I started surviving the day I was diagnosed. Some friends refer to themselves as breast cancer warriors, and maybe that implies they’re more determined to fight. But I’m quite proud to say I’m a survivor. It’s an amazing gift to be around, to live my life.”
Karen Davis, 50, of Woodinville, Wash., was diagnosed in May 2005 at age 48 with stage IIIC invasive ductal carcinoma and went through treatment. The cancer recurred in April 2006. She resumed chemo and, as of September 2006, is in remission.
“To me, being a survivor means that cancer doesn’t stop me from doing anything I would have done anyway,” Karen says. When diagnosed, the IT manager had just been promoted at work and was training for a national horseriding title. “My fear was that I’d have to quit my job and stop riding horses. But my oncologist said I absolutely could continue to do both, and we planned my treatments around my horse show schedule.”
Except for immediately after surgery, Karen made it to every riding lesson during her treatment, and she made it to the regional finals. Today, she continues to ride twice a week while still undergoing chemo. “I haven’t given up one thing,” she says.
Linda Eichelberger, 53, of Mableton, Ga., was diagnosed in 2003 and underwent a lumpectomy, chemo and radiation. To her, survivorship has two meanings. “First, it means a second chance,” she explains. “We take so much for granted. A cancer diagnosis makes us open our eyes to more important things, like family and friends. Work and material things just don’t matter as much. It’s a chance to do things better the second time around.
“It’s also an opportunity to reach out to help others,” Linda continues. After completing treatment, she started her own non-profit, Breast Cancer Concierge, Inc., providing support services to other breast cancer survivors in Cobb County. “I’m a survivor on a mission,” she adds. “God’s given me a second chance, and I can’t waste it.”
“I don’t refer to myself as a survivor,” says Debby Leopold, 45, of Takoma Park, Md. “My breast cancer experience is just an aspect of my life, not who I am or a label I want to be known by.”
Debby was diagnosed at age 42 and underwent lumpectomy, re-excision surgery, sentinel node dissection, chemo and radiation. She’s now on hormone therapy. “As far as I know, everything’s OK, and part of me is proud to have gotten through it—I continued to work throughout treatment,” says the magazine editor, a self-described “triple A-type personality.” “I don’t wear my survivorship as a badge. But am I glad to still be around? Yes.”
Bonnie Powers, 57, of Hudson Falls, NY, underwent a mastectomy 15 years ago, followed by chemo and five years of hormone therapy. “There were always questionable results from mammograms on the other breast,” she relates. So she opted for a prophylactic mastectomy in March 2006.
“Before the second mastectomy, ‘survivorship’ meant that the next doctor visit could tell me the cancer was back,” she says. “I was always waiting for the other shoe to drop. The worst thing was that my younger daughter was only 10, and I wondered if I’d be around [to see her grow up]. But she’s 26 now, and having a baby. That’s what being a survivor means to me.”
“I never doubted that I’d be a survivor,” states Sandi Ralston, 66, of Mesa, Ariz., who was diagnosed in 1999 and underwent a lumpectomy, chemo, radiation and hormone therapy. Even when a benign cyst in her other breast gave her a scare toward the end of her radiation therapy, Sandi said to herself, “I won’t let this thing beat me; I’ve come too far. I guess that’s what being a survivor means…you don’t give up,” she adds.
Mary M. of Harpswell, Maine, comes from a long line of breast cancer survivors. Her mother, now 91, was diagnosed nearly 30 years ago. Her older sister received her diagnosis 10 years ago, and a younger sister, five years ago.
“I thought I’d dodged a bullet until two years ago when a routine mammogram showed I had DCIS,” Mary says. She was 57. “My mother has been a real role model [of a survivor]. And my younger sister taught me to be feisty…that I’m in control. But I don’t feel like a survivor. I just feel lucky to have caught it early.”
“With a cancer diagnosis, everyone has to face their fears, and walk that journey,” sums up Michelle Palmer. “I may be on the fence about the term ‘survivor,’ but I haven’t thought of a better one to use.”
This article was first printed in the summer 2007 issue of Lifeline.
