By Wendy S. Harpham, MD, FACP
When you see “Survivorship" in a headline, do you envision all your patients or only those who've completed therapy? Do you expect to read about medical interventions, quality-of-life issues, or advocacy? These days, any answers are reasonable—and that's a problem.
As a physician-survivor I've grappled for decades with the ambiguity surrounding “survivorship." Only recently did I see an urgent need to bring clarity to the term. Here's my story, with a vision of how both clinicians and patients would benefit from universal adoption of a single, specific definition.
The word “survivorship" has troubled me since the first time I heard it in 1990, the week of my cancer diagnosis. Decades later, my discomfort grew when the term was adopted as shorthand for “post-treatment survivorship." Like a vitreous floater, the annoyance wasn't preventing me from writing about challenges in oncology care, so I kept working around it.
Then I read Judith Pearson's From Shadows to Life—a Biography of the Cancer Survivorship Movement. Her stories took me back to an era before rainbow-colored rubber bracelets and digital communications, when patients were “victims" in an information desert. Recalling my own challenges with treatments and recoveries back then, I fantasized high-fiving—and thanking profusely—the founders of the National Coalition for Cancer Survivorship (NCCS). Today, inputting “cancer support" in a search bar yields pages of links to high-quality education and support resources. Robust data-gathering of adverse consequences of cancer therapies now impacts routine cancer care.
My stroll down memory lane wasn't all congratulatory. Many hopes prompting the survivorship movement remain unfulfilled. That disheartening realization compelled me to think about what “survivorship" means today and ask whether we need to update the definition. My exploration began with revisiting the origins of the NCCS.
I scrutinized Pearson's recounting of the inaugural NCCS meeting. Twenty-three people from different backgrounds bonded over a shared mission: To change the culture of cancer. Two key elements of their agenda were (1) helping patients move away from the hopelessness and powerlessness of “victimhood" and (2) making it routine for clinicians to address the “range of issues separate from the biology."
To jump-start their movement, the founders set out to “build an entirely new lexicon." Animated discussions about which label should replace “victim" concluded with the group settling on “survivor." Wisely, Pearson barely mentions the persistent controversy among patients over that choice because the NCCS wasn't looking for a branding opportunity. They'd succeeded whenever a patient's self-assigned label—thriver, patient active, or whatever—reflected hope and empowerment.
In contrast, success in the medical community required universal adoption of “survivor." To increase the term's impact, the founders gave it a revolutionary definition: “From the time of discovery and for the balance of life, an individual diagnosed with cancer is a survivor." Until then, “survivors" in the cancer world were grieving loved ones left behind and, only recently, patients still alive after five years.
While definitions don't necessarily prevent or solve problems, they play a vital role in communications, especially if trying to change a culture. The founders' definition promoted the perception of life before-during-after cancer treatment as a continuum. It also encouraged clinicians prescribing therapies and offering advice to consider the rest of that patient's life—where “rest" refers to both “life other than the malignancy" and “the weeks, months, or years ahead." On the other side of the stethoscope, it helped patients discuss their concerns beyond the status of their cancer.
What about the origins of “survivorship"? According to Pearson, it was first used in oncology when NCCS published its charter, which defined “survivor" and referred to “survivorship" (without a definition). Unfortunately, the noun modifier “-ship" can be interpreted a variety of ways. I mistakenly took it to mean “the state of or condition of," as in “friendship." That interpretation tripped me up by making my survivorship a fact of my disease without saying anything about my quality of life or role in my recovery.
Goal-oriented and needing more, I asked myself, “What kind of survivor do I want to be?" The qualifier “healthy" popped into my mind, with its connotation of “activity conducive to achieving the desired outcome," as in “healthy parenting" or “healthy financial planning."
To avoid confusion with “healthy" as “not displaying signs of disease," I defined “Healthy Survivors" as survivors who (1) obtain quality care in keeping with their values and (2) live as fully as possible. “Those two criteria inspire excellence without demanding perfection. They do so seamlessly over time as new challenges arise and the ability to respond in healthy ways evolves." (Healing Hope; 2018). For the corresponding word, “Healthy Survivorship," I tacked on “-ship" for its other meaning: “the art or skill of," as with “horsemanship" or “musicianship." It was a wraparound term for the work of obtaining quality care and living as fully as possible.
In retrospect, I now see that the NCCS founders had intended that same meaning of “-ship." I know this from a 1987 letter by Fitzhugh Mullan, MD, who wrote of “survivorship, the art and science of living after the cancer diagnosis." His adjectival phrase indicates a state of doing, not being, that supports the NCCS mission “to communicate that there can be vibrant, productive life following the diagnosis of cancer…."
Teasing apart the distinctions between “survivorship" and “Healthy Survivorship" is a discussion for another time and place. My concern here is the urgency of addressing the current ambiguity surrounding “survivorship." Any temporary confusion—"What is this 'Survivorship' presentation about?"—poses only minor inconveniences. My concerns revolve around the unintended consequences of appropriating “survivorship" as shorthand for “post-treatment survivorship."
The idea that “survivorship" begins after completing treatment hampers cancer care for many by disrupting the notion of a continuum “from the moment of diagnosis." That linguistic divide makes it easier for everyone to approach the active-treatment phase with complete focus on the immediate threats, leaving post-treatment and quality-of-life issues for later—or for others on the healthcare team to address. It forsakes those living with chronic, remitting-relapsing, and advanced or metastatic disease.
Looking back can help us move forward. Let's advance cancer care for all patients by using “survivorship" always—and only—to mean whole-person care from the moment of discovery and across the continuum. I propose this definition:
Survivorship: the science and art of making life the best it can be after a cancer diagnosis.
Researchers, clinicians, and advocates huddled together under one umbrella of “survivorship" positions them for meaningful connections that spark new research, funding, and education efforts based on mutual understanding. The synergy of cross-disciplinary interchange can help all stakeholders address problems of access, equity, and advocacy at all levels—from patients' self-advocacy at checkups to representatives' advocacy on Capitol Hill.
Meanwhile, it encourages everyone to keep in mind all spheres of each patient's life (physical, emotional, psychological, spiritual, social, financial), even while addressing only one aspect of care. As for a shorthand for post-treatment survivorship, "post-T survivorship" has a nice ring.
Definitions matter. As clinicians, you play a major role in optimizing patients' survivorship by defining “survivorship" for patients as a hopeful, active, and ongoing process. Then you can guide and support their efforts to make their life the best it can be today, tomorrow, and every day.
