Life After Breast Cancer

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How accurate are popular ideas about cancer? How do they play out in the lives of people who have the disease? In the case of women with breast cancer, the fit turns out to be particularly poor, according to Christina Sinding and Ross Gray, social scientists who study the relation between social imagery -- widely held attitudes and assumptions about an illness -- and the experiences of people with that illness.

In the summer of 2001, Sinding sat in on script development meetings for a play about life after breast cancer. The creative team was comprised of ten women, aged 47 to 73, with a cancer history. The team was headed by Vrenia Ivonoffski, Artistic Director of Ryerson’s Act II Studio, who would write the final script and direct the production. Ladies in Waiting? A Play About Life After Breast Cancer was performed for Ontario audiences in the fall of 2001, and has since been videotaped and distributed to breast cancer organizations across the country. Sinding and Gray have documented their observations in a recent essay, “Re-presenting Survivorship: The Interface Between Social Representations and Lived Experiences of Life After Breast Cancer.”

As the women from Ladies in Waiting? described their lives after treatment, Sinding noted the recurrent themes. The experience of surviving cancer included “an awareness of a profoundly changed body; the ongoing physical and emotional consequences of treatment; and critically, the knowledge that cancer might recur.”

These seem reasonable responses to a cancer diagnosis, yet they proved distinctly at odds with the messages received most often by women with breast cancer from family members, friends and some physicians. From all directions, reported the women on the creative team, came the message that cancer is – or should be – over. When they voiced their true thoughts, some women were told that they were overreacting or “preoccupied with cancer.” There was a widespread expectation for survivors to be unfailingly cheerful.

Not surprisingly, many survivors feel a kind of existential tension in the years after treatment. This experience, Sinding says, “may receive little recognition or sympathy. Sometimes their closest friends or family members will be least tolerant of any expression of fear or doubt.” When their real experiences are denied, women with breast cancer are likely to feel isolated. Some will find the gap between social expectations and their own experience immensely difficult.

As preparation for the play, the creative team read research transcripts from focus groups conducted with breast cancer survivors in 1997. When Ivonoffski asked for improvisations, the women drew on the research as well as their personal stories. One improvisation, for instance, centred on a woman marking the fifth anniversary of her diagnosis. Many people, and some oncologists, believe that cancer patients who live five years without recurrence are likely to have beaten the disease.

When Ivonoffski asked what friends and family would be saying on such an occasion, the women responded with comments such as: “It’s behind you now . . . You can get on with your life . . .You’re home-free,” and “We’re all so proud of you.”

People with cancer frequently report hearing comments like these, says Sinding, comments that imply cancer is over. Also common is well-meant praise for courage or endurance. She notes that “accomplishment messages may not always sit comfortably with survivors.” Some people with cancer distinguish a courageous act as an action that is chosen, from the act of getting through cancer, which is not about choice. “I had my back against the wall,” recalled one member of the script development team: “I did what I had to do.”

When they hear comments along the “I-could-never-have-done-what-you-did” line, Sinding observes, people with cancer may feel disconnected from the implied grace or glory. “You didn’t see me crawl, physically and emotionally,” one woman said. “[You speak] as if I made great plans and choices, and there was no scraping through the muck.”

Some women reject the concept of survivorship as an accomplishment, according to Sinding, out of their sense of solidarity with women who have metastatic disease and women who have died. “We don’t know why other women have died, and not us,” said one member of the team. “We can’t take credit for it.”

As this group saw it, popular images of cancer tended to obscure their actual experiences of cancer, especially its ongoing impact. The dominant social image of cancer being over as soon as treatment is complete may contribute to the unexpectedness of ongoing effects, both for the woman herself and for the people around her.

Years after diagnosis, the disease is not over

Awareness that cancer might recur is one of those experiences that separate women with a cancer history from their peers. In a second improvisation, the women were asked to identify the events or triggers that remind them of their changed health status. These ranged from minor health ailments (“When I wake up with a sore throat,” said one woman, “I think I have cancer again”) to ambiguous test results, medical appointments, anniversaries of the diagnosis, news of someone else’s diagnosis or of a death. “Just buying a suit will do it,” said one woman. “If it’s expensive, I think, ‘Will I get the wear out of this?’”

“It comes up in the media, like, every day.” The women on the creative team concurred that the coverage of breast cancer in the media can be overwhelming. The sheer number of prescriptive (and contradictory) messages about breast cancer, or what one woman described as “the public health promotion cacophony,” can make it more difficult to move on.

In the years after diagnosis and treatment, notes Sinding, any decision or interaction that projects life into the future may become threaded with calculations of how long, in fact, life will be. “For me,” said one woman, “it’s an undercurrent of self-talk, always this calculation around time ... like a subtext that rumbles on and on.”

Such feelings crop up even when women feel well. “Feeling well has lost some of its reassuring neutrality,” says Sinding. As the women on the creative team observed, most felt perfectly well at the time they were diagnosed. Feeling well, then, no longer means being well. Feeling well, these women know from experience, can coexist with having cancer.

“Fear is an integral part of survivorship for many women,” says Sinding. “It’s not all encompassing. It’s not always present; in fact, it’s dormant at times. And it does tend to diminish over time. But even after long periods of symptom-free survival, buttons get pressed.” Living with fear, it turns out, is something survivors tend to find themselves doing in the years after diagnosis. And as this play reveals, negotiating a truce with fear can be especially difficult in a social context that insists cancer is over.

Videotapes of Ladies in Waiting? A Play About Life After Breast Cancer (VHS, $30) can be ordered from The Psychological and Behavioural Research Unit, Sunnybrook and Women’s Hospital, Toronto. (416) 351-3811; Also available in this video series, Handle with Care? A Drama About Metastatic Breast Cancer.

The research discussed here was supported by the Ontario Breast Cancer Community Research Initiative and funded by the Canadian Breast Cancer Foundation, Ontario Chapter.