Who's a Survivor?
An oncologist who's had breast cancer considers the problematic phrase "cancer survivor."
A few weeks ago, I stood among 21,000 people at the Susan G. Komen Foundation's annual Race for the Cure in New York City. The participants, including me and 1,500 other breast-cancer survivors, walked, ran, or wheeled their way to the finish line in Central Park. Nearby was a "survivors' village." I wandered about, uncertain whether I belonged.
Survivor seems a strange term for a patient like me, said by her oncologist to be in remission—meaning that there's no overt evidence of persistent cancer cells in the body. The National Cancer Institute defines a "cancer survivor" as someone who's had a malignant tumor and remains alive. This holds whether you're thriving after a single intervention, like surgical excision of a small tumor, or struggling for years with metastatic illness. The American Cancer Society reports that nearly 12 million Americans are living today after a cancer diagnosis; each of us is a "survivor."
In the decades following World War II, most Americans reserved the term survivor for those who endured prolonged, traumatic experiences: a POW camp or the Holocaust. Recently, however, its meaning has evolved, influenced by factors ranging from the trivial, like the popular TV show Survivor, which aired its first U.S. season in 2000, to the tragic, like the images that we encountered the following September of those souls who escaped from burning skyscrapers in Lower Manhattan.
I can't help but wrestle with the expression. The Latin roots—super and vīvere—support a straightforward meaning: that a person has outlived another. As an oncologist, I'm not convinced of this label's accuracy, at least as it applies to a woman living after breast cancer; this, like some lymphomas and other tumors, can recur years, even decades after treatment ends. What's more, I worry the "survivor" lingo might cause harm: Just as the term can support or reflect upon a patient's courage and tenacity, it might alienate or wound someone who knows she can't alter the course of her disease.
Until recently, few doctors referred to oncology patients as "survivors." At the start of the 20th century, the public understood cancer as the usually terminal condition it was. Prior to 1926, more than 90 percent of cancer patients died within five years of their diagnosis. The outlook improved slowly but steadily. By 1975, the five-year survival rate—a crucial benchmark then for doctors—was roughly 50 percent for all cancer patients in the United States. Still, we labeled patients "victims"—if the disease was mentioned. Often, obituaries listed "a long illness" as the antecedent to death.
In 1985, the New England Journal of Medicine published a landmark essay, "Seasons of Survival: Reflections of a Physician With Cancer," by Fitzhugh Mullan, a doctor who'd undergone extensive treatments 10 years prior for a complicated chest tumor. He outlined what was then uncharted medical territory: the physical, emotional, and social issues, like pain, fatigue, and depression, that plague patients just as they lose touch with their oncologists and, typically, support from friends and family wanes. Though survivor was used occasionally before Mullan's essay was published, he's credited with bringing it into today's wide usage. "The term is not a terrific one, and I used it only in the absence of finding anything better," he admitted in a 2004 interview with NPR's Neil Conan.
When Mullan and others founded the National Coalition for Cancer Survivorship, their goals were forward-thinking, even progressive. Before 1985, you couldn't call yourself a "survivor" until the five-year benchmark passed, says Julia Rowland of the National Cancer Institute. The expression drew attention to this burgeoning patient group that needed new kinds of support. It shifted the public's perception of cancer: What was a dreaded disease became a treatable one. Now, the overall survival rate at five years approaches 70 percent.
At one level, it seems illogical to restrict the term's use, in medical parlance, to former and active cancer patients. We don't, for example, refer to Dick Cheney as a "survivor," even though he's fortunate to be ticking after several heart attacks. A recent editorial in the Annals of Internal Medicine, "Survivorship Will Be the Defining Challenge of Critical Care in the 21st Century," suggests this habit may turn. The authors appropriated the language to people who've come through prolonged intensive care and proposed that doctors draw on the "oncology experience" regarding the long-term physical and psychological toll of harsh, body-altering medical traumas.
Elaine Schattner is a trained oncologist who lives and teaches medicine in New York City. She blogs at Medical Lessons.
Photograph of woman with breast-cancer-awareness ribbon by Dynamic Graphics © Getty Images.