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National Coalition for Cancer Survivorship
Different shades of cancer survivorship leave some wondering if they've deserved the title.
After John Bartimole experienced early-stage esophageal cancer in 2006, he didn’t consider himself a cancer survivor. Both of his parents died from cancer. One sister was battling breast cancer and another sister was taking prophylactic medication because of her high risk of breast cancer. When he went to medical appointments, he saw other cancer patients struggling just to live. He figured his own good prognosis and minimal treatment with photodynamic therapy didn’t warrant the badge of survivorship.
“I considered this not as serious,” says Bartimole, who now has only periodic endoscopies to monitor his condition. “These people went through hell and back. While I was very sick after treatment and had a few weeks of not being able to go into sunlight, it seemed like a walk in the park in comparison.”
It’s not uncommon for people who’ve dealt with cancer to question their identity and how they fit into the community of cancer survivorship.
The Survivor Debate
“People have taken the word 'survivor' and debated it,” says Ellen Stovall, senior health policy adviser for the National Coalition for Cancer Survivorship (NCCS) and herself a survivor of Hodgkin lymphoma and breast cancer. “A lot of people are uncomfortable with the word.”
It was one of the founders of NCCS, Fitzhugh Mullan, who first defined “survivor” in a 1985 article published in The New England Journal of Medicine, bringing the concept into both medical and mainstream conversations. In essence, a person was considered a survivor from diagnosis to death.
“The definition hasn’t changed through the years as much as the community has responded to the definition,” Stovall says. Not all cancer organizations have adopted the definition espoused by the NCCS, which also considers family and other loved ones of the patient as survivors.
The Changing Stereotype
Melissa Collins of Royal Oak, Mich., also questioned her survivorship status after she received a diagnosis of early-stage melanoma at age 40, undergoing a wide-excision biopsy and lymph node removal in April 2011. Although the procedure left a 7-inch scar on her right leg, she required no chemotherapy or radiation and soon resumed her normal life. It was the emotional toll and feeling uncertain about her future that impacted Collins the most.
But to both herself and others, she was far removed, at least on the surface, from the stereotypical image of a sick, weak and bald cancer patient.
In fact, that stereotypical image of cancer patients as victims often gives way to strong, empowered cancer survivors. And with advancing knowledge and new treatment options available now, many people may not present the classic signs of someone going through cancer treatment. Some patients may choose to continue working. They may take a pill with minimal side effects instead of receiving toxic chemotherapy infusions, or have a cancer that needs only watchful waiting. But with this changing landscape, patients, such as Collins, sometimes wonder if they deserve to be called a survivor.
Everyone Deserves Support
Debbie Woodbury, a support volunteer at Cancer Hope Network, says it’s not uncommon. “Anyone who has heard the words, ‘You have cancer,’—you’re part of the club.”
A survivor of non-invasive breast cancer, she struggled with the identity issue herself until she realized it wasn’t the amount of treatment that defined a cancer survivor, but the disease’s emotional impact.
She developed the community website WhereWeGoNow.com to help cancer survivors understand and discuss these emotional survivorship issues. It was on that community site where someone wrote that going to a support group felt like "going to a weight loss group with only five pounds to lose and having everyone look at you like you don't really understand the struggle, and that you really don't have a problem."
“Some people don’t feel entitled to connect, relate or look for help,” Woodbury says. “I learned I had to talk to other survivors. It’s an emotional battle. I had to sit and tell my kids I had cancer, just like you.”
Woodbury encourages patients who may feel undeserving of support to attend a support group or reach out to other patients and survivors and discuss how they are feeling. She says it helps to know they’re not alone with these emotions. How they identify themselves after a cancer diagnosis can also have important health implications, both psychologically and physically.
It was a bitter exchange via social media with a fellow melanoma survivor who said that early-stage patients were not “real warriors” that helped Collins realize she deserved to consider herself a survivor. Other melanoma survivors, including those whose disease were in late stages, rallied to her defense, noting that they were all fighting a common enemy, for a common goal.
“I can say it easier now: I’m a survivor,” Collins says. “Initially it was hard to say out loud, but I’m definitely a survivor.”
An Evolution of a Survivor
For John Bartimole, it was an evolution in thinking that took years for him to consider himself worthy of the cancer survivor label. Years after his diagnosis, he admits he was fearful about his future and the self-realization that he had, indeed, undergone a life-altering medical crisis that requires him to be extra vigilant about his health and to change his diet and lifestyle.
“I’m the eternal optimist, so maybe that’s why I didn’t initially consider it with the gravitas that I should have,” Bartimole says. “But the reality is that it was a major life occurrence for me, and I’m acutely aware now that I am a survivor.”
Additional reporting by Elizabeth Whittington.^ TOP OF PAGE