Breast cancer awareness month, also known as October, came and went with scant attention paid to a new, groundbreaking book: After the Cure: The Untold Stories of Breast Cancer Survivors by Emily Abel and Saskia Subramanian. Then again, stories of women coping with life-altering, post-treatment maladies have remained “untold” for a reason. As Abel, a professor of health services and women’s studies at the University of California, and Subramanian, a sociologist at the UCLA Centre for Culture and Health, point out, the topic runs counter to the “celebratory breast cancer culture,” one filled with inspiring narratives of good health and spiritual rejuvenation.
That wasn’t Abel’s experience after radiation and chemo for breast cancer in 1993. Her doctor told her recovery would take a year; to this day she still suffers from fatigue. She began noticing a “cone of silence” around the subject of health when talking with other survivors: “Everybody was supposed to say ‘I’m fine, I’m great’ and of course we were fine—those of us who survived were really very lucky and we did consider ourselves fine. But we began to realize we also had other problems that no one was paying much attention to.”
After the Cure provides voice to breast cancer survivors thrust into a netherworld of chronic disability, afflicted with symptoms that include numbing fatigue, joint pain, mouth ulcers, mobility problems and severe cognitive impairment dubbed “chemobrain.” Their distress is compounded by doctors who dismiss their complaints as psychosomatic, and once-supportive family and friends who urge them to get on with their lives.
The fact more women survive breast cancer permitted this pioneering study, says Subramanian. Yet they had difficulty finding funding, which ultimately came from the respected Susan G. Komen Foundation. “We were told it wasn’t a real phenomenon,” she says, noting she wasn’t surprised: “It’s the history of women’s medicine that we are hypochondriacs and hysterics and malingerers. And that is such an inappropriate way of managing the health care of half of the population.”
Eileen Rakovitch, a radiation oncologist and chair of the breast cancer program at Toronto’s Sunnybrook hospital, views After the Cure as an invaluable addition to breast cancer literature, and intends to give copies to colleagues. “Although it’s important to emphasize breast cancer survivorship because mortality is declining, I don’t think we want to make it too glamorous and to make survivorship mean everything is as good as, and in some cases, better than before diagnosis because that’s not true for many women,” she says. One of her patients, a foreign correspondent, had such severe cognitive dysfunction she was unable to return to work.
Raising awareness is their goal, says Subramanian, who has produced a documentary, Beyond Breast Cancer: Stories of Survivors. She wants doctors to inform women undergoing toxic remedies that there can be serious long-term problems in a small number of cases. It’s a difficult balance, Rakovitch notes: “At the time of diagnosis, women are so overwhelmed. They’re interested in surviving those two to three years rather than worrying about their cognitive status in three years.” She too would like physicians to inquire more actively about post-treatment symptoms and validate women who come to them with complaints. Medical acknowledgment is crucial, says Abel: “Without validation, employers won’t listen, family members think they’re malingering, and people can’t get disability benefits.”
Many women interviewed in After the Cure bristle against the unrealistic cultural expectations placed on a buoyant recovery. One speaks of coming to terms with malingering lymphedema and chemobrain: “So I don’t see them as symptoms anymore; I see them as, ‘this is how my life is now. It sucks; it will always suck.’ But if I spend all of my time thinking how rotten it is, I’m not going to have any life.” Rakovitch believes post-treatment life is the next step in breast cancer research, noting studies are under way on the use of Ritalin to ease chemobrain. Karen Fergus, a Toronto-based psychologist who works with breast cancer patients, is co-authoring the first study of body image and sexuality among survivors. Abel and Subramanian are examining the use of acupuncture to alleviate fatigue. The lives of women living after The Cure can’t be tied up neatly with a pretty pink ribbon quite yet.