The isolation of cancer survivors

The 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 institutionalised 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 & National Research Council, 2006). The redefinition of cancer victims as cancer survivors is linked to a wider discursive shift characterised 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 self-improvement” (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 towards 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: (a) encouraging a positive, active attitude in patients; (b) celebrating the patient as a heroic victor; (c) envisioning cancer as an opportunity of self-improvement. Our participants identified this discourse as distinctly American, with a “just do it” flavour, and rather alien to their own experiences, which they mostly described as traumatic, characterised by silent and painful isolation. Cancer is commonly considered an existential disruption (Hubbard & Forbat, 2012). Our participants described the moment of diagnosis and the following months of treatment as a traumatic experience, characterised by intense emotions but also a sense of detachment. Such detachment is similar to the dissociative state typical of acute stress reaction (American Psychiatric Association, 2013): they were living “in a stand-by mode,” “in a bubble,” and “without really touching the ground.” They said they experienced, in this initial phase, a “loss of control” over their lives, being “unable to do anything, only being ill,” surrendering to the healthcare “machine” and its “whirlwind of treatments.” The physical and psychosocial impact of cancer extends well beyond the acute phase. The prior trauma and future prognostic uncertainty induce a sense of existential vulnerability that can at times challenge or even disrupt one's self-identity (Smit, Coetzee, Roomaney, Bradshaw, & Swartz, 2019). Our participants described their intense efforts to try to forget, move on and reclaim a normal life; however, they also insisted that “they were not the same persons before and after cancer.” This change in their sense of identity was experienced as an existential wound, very far from the self-improvement highlighted in the survivorship framework. To know someone who has had cancer doesn't give these people the right to talk as if they had lived this experience in the first person … Everyone thinks they know exactly what we have been through … but, I mean, they don't know anything … you don't know, shut up! The pain expressed here is one of radical isolation, echoing Arthur Frank's statement (1995) that those who are ill are “wounded not just in body but in voice.” This sense of isolation was also perceptible in the relief participants found in telling their stories within the group. They expressed a deep surprise that they were in fact able to speak about their experiences, sharing their thoughts, fears and emotions with their peers. They reflected that giving room to the experience might be more helpful than desperate attempts to forget and move on. At the end of the study, the participants insisted on an additional meeting to discuss the possibility of creating a continuing support group stemming from the focus groups. Their project, however, has not been realised to this day. It is also notable that, in our region, a number of programmes for cancer patients include some form of group support, but most of the participants had not found their way to them. In other words, our participants, like many patients, seemed ambivalent about the prospect of sharing their experiences. Repression is likely one major reason at play here. North American critics have argued that some stories remain untold because “people don't want to listen about the most horrible fears of cancer patients” (Segal, 2010). The hero narrative has thus become “the preferred paradigm for understanding the experience of breast cancer” (Goldenberg, 2010). Our participants' stories were untold stories, and indeed stories of horrible fears, enduring tragedies and non-heroic journeys through the experience of cancer. However, they were not silenced by some dominant survivorship discourse. These women remained silent because they believed no one was able, or even willing, to understand their pain. The survivorship discourse has been justifiably criticised as coercive. Nevertheless, it invites patients to speak up and tell their stories. Even though such testimonies are expected to adhere to a “positive” frame, there is a degree of freedom offered here, an invitation to share and to break the radical isolation experienced by our participants. The survivorship movement has been true to its commitment to “break the silence” (Lorde, 1980). By contrast, rather than being compelled to speak up, our participants felt condemned to silence. Yet, they eagerly seized the opportunity to engage in a collective, narrative work with their peers. This was actually a serendipitous effect of our research project. Our findings, clinical wisdom, and even common sense suggest that patients need to find someone willing to listen to their stories without attempting to shape them according to a pre-existing framework of optimism and positivity. Under the appropriate circumstances, support groups can offer such an opportunity. Our participants' insistence that only their peers could understand them was striking, and it indicated that they felt their physicians were unable to hear their “most horrible fears.” However, clinical practice should be about helping patients in their singular predicament. Medicine is grounded in the shared humanity of patients and doctors, not necessarily a shared experience of, for instance, going through a severe disease (Saraga, Boudreau, & Fuks, 2019). Beside all that support groups can bring to patients, we believe that physicians, if they are willing to engage authentically with their patients' painful experiences, can also offer relief to the terrible isolation. The authors would like to thank the research participants, as well as Prof. Abraham Fuks, from the Faculty of Medicine of McGill University, Montreal, for his help in the preparation of the manuscript. No conflict of interest.

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