The isolation of cancer survivors

The isolation of cancer survivors, which has been published in final form at https://doi.org/10.1111/ecc.13194.This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Use of Self-Archived Versions. Discourses and experiences of cancer survivorshipThe population of patients living with, or recovered from, cancer is increasing.In North America, they are commonly designated as cancer survivors.Cancer survivor, however, is not only a label.It was claimed as a new status, in contrast to cancer victims, by what was initially a grassroots movement in the early 1980s (Mullan, 1985).It has now become institutionalized in North America, with public and private agencies, scientific conferences, and medical journals, all dedicated to the physical and psychosocial issues facing cancer survivors (Bell & Ristovski-Slijepcevic, 2013; Institute of Medicine and National Research Council, 2006).The redefinition of cancer victims as cancer survivors is linked to a wider discursive shift characterized by a more positive, optimistic attitude to the experience of cancer.In the survivorship framework, the patient is portrayed as an active, empowered participant in the fight against disease.Treatment is a battlefield and the survivor is celebrated as the triumphant, heroic victor.Most strikingly, cancer is presented as a "makeover opportunity" (Ehrenreich, 2001).In "countless personal stories of selfimprovement" (Segal, 2010), the survivor is a hero transformed by the experience, growing stronger and wiser (Segal, 2008;Stacey, 1997).A telling example is Lance Armstrong, who was cured of a testicular cancer, then went on to win the Tour de France, and wrote in his autobiography (2006): "I prefer the title of cancer winner to that of Tour winner, because of all that this experience has brought me as a human being, as a man, husband, son, father."Such a dominant discourse has an impact on patients (Bell, 2012;Sinding & Gray, 2005), who live in a social world with explicit and implicit norms and expectations regarding their experience of and attitude toward cancer.As Segal (2010) wrote in a provocative editorial entitled Cancer isn't the best thing that ever happened to me: "If, as a person with cancer, you violate the code of optimism, or if cancer somehow failed to improve you, you'd better be quiet."Research has also shown that, while some patients are keen to embrace the survivor identity, many others resist the label (Kaiser, 2008;Rees, 2018).The terms cancer survivor and survivorship are also becoming more common in Europe (Reuben, 2004).However, terms, concepts, and discourses may change as they cross an ocean and their impact may vary in different cultural contexts.In order to investigate the hypothesis that they may find alternative expressions in Europe, we conducted an exploratory study of cancer experience in French-speaking Switzerland.We recruited 13 women in sustained remission (5-10 years) from breast cancer.We conducted two focus groups (6 or 7 participants), in which we discussed materials selected to illustrate the three core aspects of the survivorship discourse: 1) encouraging a positive, active attitude in patients; 2) celebrating the patient as a heroic victor; 3) envisioning cancer as an opportunity of selfimprovement.Our participants identified this discourse as distinctly American, with a 'just do it' flavor, and rather alien to their own experiences, which they mostly described as traumatic, characterized by silent and painful isolation.

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