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.
At a deeper level, what's wrong is that the expression connotes strength or heroism. Today, survivor feeds into the concept of cancer as some sort of contest of harsh ordeals. Best sellers like Dr. David Servan-Schreiber's Anticancer: A New Way of Life push the impression that survival implies you've done something right. The fault's in the converse: If you don't lick your tumor, you've failed. Maybe you chose the wrong treatment plan, ate the wrong foods, exercised too little or too much, or weren't sufficiently optimistic. But cancer is not a mystic life challenge or game. It's a disease, or really a set of complex diseases, that's common, feared, and widely misunderstood.
Musa Mayer, who advocates for women with advanced breast cancer, laments the persistent gap between the common understanding of survivor—someone who doesn't die of the disease—and the formal definition espoused by the National Cancer Institute and most private foundations. The focus of many public awareness and fundraising campaigns, celebrating life and emphasizing survival, can be at odds with the bleak circumstances of patients with terminal disease.
Increasingly, people are living with cancer as a chronic illness. More than 160,000 women are alive now with metastatic breast cancer—all are "survivors," many with low odds of remission. The precise number of patients living with recurrent or disseminated malignancy is uncertain but growing, a function of new, often-expensive, targeted treatments. In this context, the image of a cancer survivor as someone who's outlived, or overcome, the condition seems out-dated. Patients like Elizabeth Edwards offer a new kind of cancer survivor model, says Dr. Barron Lerner, a physician and medical historian at Columbia University (and Slate contributor). She illuminates how a woman can live, for years, with what's likely an incurable form of the illness.
In a recent Vanity Fair piece, Christopher Hitchens, who recently learned he has esophageal cancer, takes issue with the combative language surrounding oncology. I agree with his critique. What's more, I think we need to change the dialect regarding life after cancer to include a more nuanced definition of survivorship, or perhaps invent a new, simpler word for people who are in remission and not actively undergoing treatment. In the current issue of the Annals of Internal Medicine, Esther S. Tanzman, another physician who has had breast cancer, suggests the word "survivor" might be followed with an asterisk.
Triumph-over-cancer narratives like Lance Armstrong's are powerful. To "live strong" works as an aspiration. It helps patients get through tough situations. Only a cynic would dismiss all the tangible, big-money support for research and the information and practical assistance offered by the survivor community's enthusiasm. But the true heroes in this—those deserving of pink ribbons and medals, if they're to be given—are those who struggle longest and hardest, who will never truly be "survivors" in the commonly accepted sense of the word.
It's not the same for people like me, who move on with their lives after a discrete, albeit sometimes harrowing episode of illness. I'm an oncologist; I know I've done nothing in particular to deserve these eight years since my diagnosis. I lucked out, nothing more. And sure, I'm uncertain about my future. But who isn't?