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For the Few, Not the Many

Considering the Limitations of Cancer Survivorship

Kagan, Sarah H. PhD, RN

doi: 10.1097/NCC.0000000000000726
DEPARTMENTS: Insights
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Author Affiliation: University of Pennsylvania School of Nursing, Philadelphia.

The author has no funding or conflicts of interest to disclose.

Correspondence: Sarah H. Kagan, PhD, RN, University of Pennsylvania School of Nursing, 418 Curie Blvd, Philadelphia PA 19104 (skagan@nursing.upenn.edu).

Cancer survivorship looms large in contemporary cancer policy, care, and research. In 1985, Mullan1 codified his experience as a young physician diagnosed with cancer. He used the term “cancer survivor” and conveyed a life after cancer in The Seasons of Survival. Mullan spoke with a powerful voice2 for the few, a population numbering about 5 million in 1990, and the young, who then imagined a future laid before them after beating prognostic odds.

Three decades on here in the United States, cancer survivors number almost 17 million, representing 5% of our population.3 Like the population, the definition of cancer survivor expanded over time to convey a more inclusive classification beginning with diagnosis. These millions of people are dominantly older and projected to age rapidly in concert with general population age demographics.3,4 The few are today the many, projected to top 26 million in 20 years, and the old, with the great majority older than 65 years and often living decades past their initial diagnosis.3 With vast numbers, advancing age, and shifting social mores, how apt is survival in capturing life with and after cancer today5?

Cancer survivorship misaligns with those living with and after cancer in the present day. Misalignment may well rest with historical origins of youthful triumph over cancer. The clash between history and reality generates 3 problems. First, the word “survivor” belies a belief that cancer treatment over and above the disease itself is necessarily and intransigently traumatic. Second, youthful origins of the survivorship movement imply cancer is the sole health concern as opposed to the multimorbidity faced by older people. Lastly, use of “survivor”—as with any label—risks categorizing individuals, neglecting they are far more than their cancer experience.

Survivorship connotes trauma. Long used to describe those who transcend violent and malicious attacks, using the term “survivor” in relation to cancer inadvertently underscores perceived lethality and expected toxicity. Metaphors of trauma may verge on fear mongering to the many today, obviating what energizing power the label survivor offered to those few of years past.

People living with and after cancer treatment commonly contend with multimorbidity and functional change as they age. Both age-associated epidemiology and premature epigenetic expression of frailty enhance the probability of multimorbidity.6 Reliance on subspecialist cancer care to meet their health needs is then paradoxical and ineffective. A specialty approach to cancer survivorship runs in opposition to evidence supporting optimal health and social care for frail, multimorbid individuals.7

Identity politics in healthcare and society oppose categorical labels of patient, survivor, and similar tags. Berry and colleagues8 report findings suggesting just how noncommittal survivors feel about this label. Those whom healthcare policy designates cancer survivors seem rather disinterested in the label, with some appearing to reject it altogether.8 Similarly, movement toward person-centered healthcare more broadly rejects appellations that categorize and depersonalize in favor of humanizing healthcare with genuine relationships.2,7,9

Cancer survivorship exists now in a liminal space, having emerged in a far different era. We live in an aging world where cancer is, because of treatment advances and improving supportive care, often curable and likely controllable for the majority diagnosed today. Innovative science mandates our careful consideration of ramifications and limitations inherent in uncritical application of cancer survivorship.2,8,10

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References

1. Mullan F. Seasons of survival: reflections of a physician with cancer. N Engl J Med. 1985;313(4):270–273.
2. Bell K, Ristovski-Slijepcevic S. Cancer survivorship: why labels matter. J Clin Oncol. 2013;31(4):409–411.
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