The Semantics of Survivor
How we came to be called “cancer survivors”
On August 23, 2012, Lance Armstrong stated he would no longer contest the doping charges levied against him by the United States Anti-Doping Agency.
I remember the date because one day earlier, on August 22, I was officially diagnosed with cancer for the second time. And I took note because my first cancer experience, not quite a decade before — had also felt touched by Lance Armstrong’s media presence.
After a diagnosis and surgery in December of 2003, my recovery period lasted through 2004 — and thus coincided with the debut of the LiveStrong yellow rubber bracelet, the signature fundraising item for the cancer support charity founded by Armstrong — then a five-time Tour de France winner, and survivor of testicular cancer.
The wristbands, designed by Nike’s advertising agency, Wieden+Kennedy, were priced at one dollar. The first five million bracelets sold out quickly, as people bought them both to fund cancer research and to show support for friends and family afflicted by cancer. Something about the debossed, block letters exhorting us to “Live Strong” captured our imaginations as well as our dollar bills. The bracelets seemed to embody the spirit of Armstrong himself, as he pursued his sixth consecutive Tour de France championship. It was so seductive, the idea that we, too, could conquer cancer and go on to win the race.
Although I never had a yellow bracelet, 2004 was my year dedicated to living strong as I worked physically to regain strength in muscles that had been severed in the course of surgery and overcome the deep fatigue that washed over me in waves; pushed intellectually to grasp the statistics and risk calculations associated with various treatment options; and wrestled emotionally with fear and uncertainty.
At the same time, I grappled with core issues of identity… what did it mean to be a person living with cancer?
Only a couple decades earlier, my choice would have been basically binary: I could have been a cancer patient or, alternatively, a cancer victim. But in 2004, I could choose another descriptor, one that eschewed any meek acceptance of predetermined fate and embraced a sense of empowerment. I could be a cancer survivor. My awareness of this was due, in no small part, to Lance Armstrong. In 1997, in the midst of his fight with cancer, Armstrong had said he was “not a cancer victim but a cancer survivor, hell-bent on living strong.” The term cancer survivor was not original to Armstrong, but his use popularized it and highlighted an emerging sensibility about how people conceptualized their relationship to cancer.
Interestingly, cancer survivor, as originally used, was not intended to deliver an empowering message. The man who coined the term, Dr. Fitzhugh Mullan, a cancer survivor himself, first publicly used the term in a 1985 article in the New England Journal of Medicine titled, “Seasons of Survival.” Years, later, during the 2004 flush of enthusiasm for “living strong” and survivors,” he talked about this article on a segment of National Public Radio’s call-in program, Talk of the Nation. He recounted his own cancer experience: a complicated surgery followed by chemotherapy and radiation, saying, “At first I was very clear, ‘I’m sick and fearful of dying’ — mostly I wanted to know when I was cured. And what became increasingly apparent was, as with almost everyone with cancer, that the binary notion of either death or cure which we start with, isn’t the reality. The reality is a kind of DMZ, a kind of purgatory in which for a long time it may not be clear exactly the outcome, with lots of complicating issues that nobody really focused on.” Far from trying to adopt a victorious posture, Mullan had used cancer survivor in an attempt to create a practical label for individuals who were past the initial stages of treatment but still dealing with the myriad issues — medical, social, vocational, and insurance related as well physical and psychological.
Though the interview originally aired during my year of cancer recovery in 2004, I did not encounter it for another five years. In 2009 (the debut year for both the television series and the Destiny’s Child hit song, Survivor) I listened to an archived recording while curled up on a second- hand couch in the corner of a boxy post-WW2 apartment in Tallahassee, Florida. Once the shock-and-awe phase of my cancer diagnosis had passed and I felt my health and energy returning, my husband, Paul, and I had applied to graduate schools. The move to a college campus in a different country had taken me far from the “cancer community” that had grown around me in the wake of my illness, and I had started something entirely new. It was heady and invigorating to befriend other students and teaching assistants, to envision a new career and future. I enjoyed hanging out with my young and healthy peers, but there was a part of me that never forgot I was different.
Five years earlier, in the wake of my surgery, doctors had tested my tumor and discovered I carried a genetic mutation that greatly increased my risk for a number of gastro-intestinal and reproductive cancers. So while some of my new friends followed vegetarian diets, didn’t drink or visited the local Buddhist center for meditation sessions, our motivations for doing these things were not the same. Nor were our concerns about life after graduation. The fact that I had returned to school instead of resuming my stressful former career in event production was a decision influenced by health as well as inspiration. Being a writer, I thought, could be less stressful, I could work from home if needed and have flexible hours. My idealized vision of a writer’s life was unrealistic for a number of reasons — but one of the biggest was that I didn’t recognize the impossibility of existing as a self-employed freelancer when no individual health plan would cover my “pre-existing condition.”
I didn’t understand that I would need to turn down wanted opportunities if the companies didn’t offer large-group-medical plans, because even if I were lucky enough to avoid a recurrence of disease, there was no landscape of my future that wasn’t populated with colonoscopies and blood draws, scans and uncertainty. I’d witnessed my father, from whom I’d inherited my genetic mutation, receive test results leading to diagnoses, surgeries and treatments more than a half-dozen times over the decades before he died of pancreatic cancer on the cusp of his eightieth birthday. I had survived my first round of cancer, but knew it was too early to call myself, in the Armstrong sense of the word, a cancer survivor. I was, in a few ways, a cancer survivor in the way that Mullan had intended the word to be used — to describe someone who moves through the initial crises to find herself dealing daily with a set of tedious-to recount issues seldom shown in Hollywood movies because they are so un-dramatic.
But by this time, the meaning of cancer survivor had already made its pivot.
It was the National Coalition for Cancer Survivorship (NCCS), which Mullan helped found in 1986, that chose to embrace cancer survivor for its motivational properties as well as its functionality. In the mid-eighties, cancer issues did not yet enjoy the advocacy and publicity they do today, so –according to Ellen Stovall, one-time president of the NCCS — the organization used to phrase intentionally, to “empower patients to make decisions about their care and to push for better research and treatment.” The NCCS definition of a cancer survivor is stated in its charter: “From the moment of diagnosis and for the balance of life, an individual diagnosed with cancer is a survivor.”
As this usage has become common, it has been, as Mullan intended, “serviceable,” but not without difficulties — as a number of listeners to the Mullan’s Talk of the Nation segment called in to point out.
Two callers noted that while the word survivor generally refers to someone who has lived through a finite experience, that the individuals we call cancer survivors often cope for years or even decades with cancer and its effects. Though both callers were in remission, each spoke about living with the specter of the disease’s return and thus were more comfortable with the alternate phrase, living with cancer. Another caller, however, disagreed. Twelve years out from her diagnosis, she felt she had left her cancer behind and no longer wanted to be identified as a person living with cancer.
Another woman called in to question whether survivor was too heroic a term for her cancer experience. Because she had not undergone radiation, chemotherapy or other grueling adjuvant treatments, she felt her cancer had been relatively “easy.” She found herself reticent to don the mantle of survivorship just because she’d had an operation. As the moderator joked, “Are there appendectomy survivors?” As someone who was also fortunate enough to avoid conventional post-surgical treatments, I sympathized with this woman’s dilemma. Could my self-prescribed regime of drinking carrot juice and meditating really compare to the months of debilitating treatments I’d witnessed friends undergo?
Not everyone, of course, is so reluctant to don a badge of honor when it’s offered. When the National Cancer Institute (NCI) established the Office of Cancer Survivorship in 1996, they adopted an expanded version of cancer survivor in order to acknowledge the burden on caregivers. According to their statement, “Family members, friends and caregivers are also impacted by the survivorship experience and are therefore included in this definition.” I read this aloud to my husband and for weeks after he responded to the mention of any unfinished chore by falling dramatically to the sofa, batting his eyes, and moaning, “Why are you so mean to me? Don’t you know I’m a cancer survivor!”
But I understand the impetus behind the NCI’s definition. I watched my mother support my father through several bouts of cancer over the years, and can attest to the heavy physical and psychological toll it took. As individuals and as a society, we fall far short of recognizing how the need for support goes beyond those with a disease.
At the same time, having one term with multiple definitions can be confusing. In addition to the NCI’s expanded use of the term, other organizations have adopted permutations as well. The President’s Cancer Panel in 2003 defined survivor as “anyone who has ever had a cancer diagnosis,” and in the same document stated it was “synonymous with ‘patient,’” a word that in other arenas refers specifically to someone currently undergoing treatment. The survivorship program at Sloan-Kettering Cancer Center in New York defines survivorship as a “particular period in a cancer patient’s life, which is post treatment, separate from diagnosis and treatment and from end of life care.” Further complicating matters, the term has been co-opted and adapted by scientific researchers when they are establishing an area of study.
The inconstancy of the term can confuse survivors themselves, as they try to navigate the cancer landscape in today’s agenda-filled world. One attendee of an NCI Cancer Survivorship conference observed that information was hard to interpret: Citing a statistic that there were 9.8 million cancer survivors in the United States, he said, “This was intended to be a positive number, showing that more … people are surviving cancer. But because the NCI definition of a survivor is ‘anyone who has been diagnosed with cancer from the time of diagnosis though the balance of his or her life,’ I wasn’t sure how to interpret the number. How many of the 9.8 million are in the doctor’s office being told, ‘You have cancer’? How many are currently undergoing treatment? How many are in hospice? How many are now living cancer free, and of that number, how many live with the late effects of their successful treatments?”
For the same reasons that Fitzhugh Mullan originally introduced cancer survivor, it seems we now need an even fuller vocabulary to communicate clearly with insurance companies, medical establishments, and each other.
A greater abundance of functional terminology though, does not remove the need for an overarching term to describe anyone who has or has ever had cancer. I still need a way to identify myself — to myself and to others.
My own qualm about adopting cancer survivor is that I am in a position to know it is a tenuous honor. Surviving my first cancer did not inoculate me against a second, and then a third. In 35 years, I saw my father “defeat” various cancers — his victories included two full recoveries from colon cancer, and one from pancreatic cancer. He was nothing if not a fighter — and yet, in the end, he died of cancer. To call him a cancer survivor is Orwellian, yet I understand the spirit in which one might do it. After all, a warrior who dies in battle does not cease to be a warrior, and it is tempting to conflate the terms — especially when we commonly speak of “battles with cancer,” and “war on cancer.” Yet, shouldn’t the basic requisite for being a survivor be… survival?
I’ve sometimes described my father and myself as cancer veterans. A veteran is “someone who has had long experience or practice at an activity” which is accurate. Sometimes, however, I find myself less willing to embrace another metaphor generally associated with war and negativity. The crises I have survived and the threats I continue to live with have shaped me and altered the course of my life in ways that are both negative and positive. I wish to acknowledge this part of my existence in a way that is simple enough to be practical, but doesn’t imply the reality is simple.
Lately, I’ve been calling myself a cancer experiencer.
I’ll be the first to admit it lacks punch. More than once, using this term has led a well-meaning listener to assume I’m being self-deprecating and to assure me “you can say survivor.” Thank you. I know. And I’m grateful for the work and activism that has gone into giving me– and all my fellow cancer experiencers — that choice. I am so grateful to say that I have survived cancer, thrice. I have every intention to continue to live strong. But for me, survival isn’t the whole story, and if it someday comes to an end, I know that what I have experienced cannot be defined away.
This essay drew most heavily from two sources: “Debating the Term: ‘Cancer Survivor,’” a Talk of the Nation episode first broadcast on National Public Radio on June 9, 2004, and an article by Renee Twombly published in the Journal of the National Cancer Institute, titled “Debating the Term: Who Is a Cancer Survivor?” The conference attendee to whom I refer is Shirley Grandahl, and I am quoting her report from the NCI website, “Meeting the Needs of Post-Treatment Cancer Survivors, a personal reflection.”