Realistically ever after: Disrupting dominant cancer narratives within cancer advocacy organizations

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The popular narrative of cancer foregrounds a fierce medical battle waged by brave patients and heroic care providers, resulting in spectacular biotechnological warfare (King, 2006). Individual survivors construct narratives that typically feature a frightening diagnosis, knowledgeable physicians, aggressive treatment, and either a triumphant recovery and return to normal life (i.e., a restitution narrative) or a tragic death (Frank, 1995). Cancer survivorship research conclusively demonstrates that illness stories for most survivors do not end so tidily, however. The majority of the 14 million cancer survivors in the United States (Centers for Disease Control and Prevention [CDC], 2016) face a life shaped by “late effects,” or the damage caused by chemotherapy, radiation, surgery, medications, and other cancer treatments that take an enduring toll on their physical, psychological, and spiritual health (Houlihan, 2009). Late effects are often serious and disabling.

Despite the material reality of late effects, a heroic story structure organizes public discourse surrounding cancer. Cancer advocacy organizations primarily focus on screening, diagnosis, treatment, and recovery, often partnering with for-profit corporations who engage in “cause-related marketing” (King, 2006). The National Cancer Institute’s (NCI) Office of Survivorship, American Cancer Society (ACS), National Coalition for Cancer Survivorship, and Livestrong Foundation are beginning to challenge the happy endings of popular cancer stories, hinting that all is not necessarily well that ends well. Still, little emphasis is placed on postcancer living beyond the initial transition from acute treatment to survivorship, and general publics remain unaware of the prevalence of late effects among survivors.

Through my research, I seek both to (re)shape national cancer advocacy and to extend narrative theorizing in organizational communication. In this essay, I describe dominant narratives of cancer experiences promoted by advocacy organizations, how those narratives organize support for cancer survivors and their loved ones, and the (marginalized) realities of late effects for survivors. I then describe my own research with long-term cancer survivors (LTS) and its implications both for promoting alternative narratives of survivorship and for understanding narrative theorizing in organizations.