Cancer Survivorship: Why Labels Matter

Until relatively recently, the prevailing view was that a diagnosis of cancer was effectively a death sentence. However, the last 30 years have witnessed the transformation of cancer from a largely fatal disease to one in which a majority of those diagnosed receive treatments that result in long-term disease-free survivorship. This improvement in survival rates has been accompanied by a shift from talk of cancer victims to cancer survivors. The concept of cancer survivorship has been widely debated over the past few decades. In biomedical usage, the term survivor has a distinct clinical meaning, referring to individuals who have had a life-threatening disease but have remained disease free for a minimum of 5 years. However, in recent years, a variety of other definitions have been outlined. Proposed definitions differ primarily around the scope of populations covered; some refer only to those diagnosed with cancer, whereas others extend to family, friends, and caregivers. Complicating the picture is the distinction drawn between the terms cancer survivor and cancer survivorship. Although the former is used to encapsulate individuals throughout the cancer trajectory, the latter refers to a distinct phase in the cancer trajectory between primary treatment and cancer recurrence or end of life. Although each definition is an attempt to fully describe those who have been affected by cancer, their differences have contributed to ongoing confusion about who should be called a cancer survivor. Referring to the lack of consensus on how the cancer survivor is defined, Khan et al ask, “Does it really matter—is this debate trivial?” Continuing this discussion, we expand on the context in which the concept of the cancer survivor has developed, arguing that beneath what might seem like a trivial definitional debate lurks a more complicated concept structured by larger historical, social, cultural, and political forces. Most historical overviews of the concept of the cancer survivor generally attribute the first usage of the term to Fitzhugh Mullan, who argued against the dominant view that there are two different paths for people diagnosed with cancer: a path for those who are cured, and a separate path for those who are not. In his view, there was one path for people diagnosed with cancer: that of survival, dominated by dealing with the physical and psychological effects of diagnosis and treatment. He divided survival into three distinct seasons: acute survival, the period after diagnosis, when energies are focused on surviving treatment itself; extended survival, the period after completion of treatment, when the survivor’s energies are focused on dealing with the physical and psychological consequences of treatment; and permanent survival, the period when recurrence seems increasingly unlikely, although the survivor is continuing to deal with the long-term effects of treatment. Mullan’s dual status as a cancer survivor and a physician likely played no small role in the legitimacy accorded to the concept and the momentum his commentary generated for the nascent cancer survivor movement. The concept of the cancer survivor soon captured the imagination of those affected by and working in the field of cancer by drawing attention to the ongoing issues people with a history of cancer face after they have been successfully treated, many of which stem from the iatrogenic consequences of treatment itself. It also articulated the reality that people with a history of cancer do not just rejoin the land of the well when they are deemed cancer free. Rather, they live in the ambiguous space between the well and sick. In 1986, Mullan, along with representatives from 20 organizations, founded the National Coalition for Cancer Survivorship, a survivor-led advocacy organization seeking to change the focus from cancer victim to survivor. The National Coalition for Cancer Survivorship argued that “from the time of its discovery and for the balance of life, an individual diagnosed with cancer is a survivor.” Founded in 1996, the Office of Cancer Survivorship of the National Cancer Institute has retained the spirit of this definition while expanding it to suggest that “family members, friends, and care-givers are also impacted by the survivorship experience and are therefore included in this definition.” However, the Office of Cancer Survivorship also emphasizes the distinction between the concept of the cancer survivor and the cancer survivorship phase, choosing to focus its activities on the latter because of its relative neglect in advocacy, education, clinical practice, and research. These various definitions demonstrate that the concepts of the cancer survivor and cancer survivorship are far from neutral. They are not just attempts to describe something but to do something: to mobilize patients, oncologists, researchers, and all others affected by or invested in the experience of cancer. Although these developments are central to understanding debates about the term cancer survivor today, to fully understand the concept, we need to go back further in time, because the term survivor itself has been around for centuries—although its connotations have shifted over time. The oldest references appeared in the late 16th century and referred to a survivor in relation to the death of another/ others. For example, in 1594, Shakespeare made reference to “thy surviving husband” in his poem “The Rape of Lucrece,” reflecting its legal usage at the time, whereby the survivor of someone gained the rights/inheritance of the deceased. JOURNAL OF CLINICAL ONCOLOGY COMMENTS AND CONTROVERSIES VOLUME 31 NUMBER 4 FEBRUARY 1 2013

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