Survivor Defined

With varying shades of survivorship, many patients who don't fit the stereotypical image wonder if they've deserved the title of cancer survivor.

Talk about this article with other patients, caregivers, and advocates in the General Discussions CURE discussion group.
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.

“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.

[Facebook Discussion: How do you define "survivor?"]

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.

[Read "Surviving 'Survivor' Stereotypes"]

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.

Talk about this article with other patients, caregivers, and advocates in the General Discussions CURE discussion group.
Cure Connections
Related Articles
Buying Hope: Life After a Fertility-Threatening Diagnosis
It’s all about having a plan. Plans give hope. Plans inspire.
A View From a Young Lung Cancer Survivor: Genomic Testing Provides Hope
To gain a patient’s perspective on the Genomics of Young Lung Cancer Study and the importance of genomic testing, we spoke with Corey Wood, a 23-year-old trial participant and lung cancer survivor.
Chemo Brain: A Breast Cancer Survivor's Commentary
Two-time cancer survivor struggles living with chemo brain.
Acupuncture Could Cool Hot Flashes in Breast Cancer Survivors
Electroacupuncture produced larger placebo and smaller nocebo effects than did gabapentin for treating hot flashes among breast cancer survivors.
More Doctor Time, More Understanding
I wish my doctors knew more about the emotional aspects of cancer and were given more time with me.
Related Videos
Sharon L. Bober on Sexual Health Changes in Relation to Treatment
Sharon L. Bober, director, Sexual Health Program, Dana-Farber Cancer Institute, discusses changes in sexual health as they relate to different treatments for cancer.
Ginny Finn on the Importance of Addressing Breast Cancer Survivorship Issues
Finn says it’s important for advocacy organizations to attend and socialize at these conferences to explore possible collaborations.
Gwendolyn P. Quinn on the Need to Educate Health Care Providers on Reproductive Health
Gwendolyn P. Quinn, member, Moffitt Cancer Center, comments on the need to educate all health care providers — especially those caring for patients with cancer — on sexual and reproductive health.
Gwendolyn P. Quinn on Infertility Among Survivors of Adolescent and Young Adult Cancers
Gwendolyn P. Quinn, member, Moffitt Cancer Center, discusses causes and effects of infertility among survivors of adolescent and young adults cancers.
Hope Rugo on Managing Sexual Dysfunction From Ovarian Suppression
Hope S. Rugo discusses managing sexual dysfunction from ovarian suppression treatment for breast cancer.