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Introduction
- NYU Press
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1 Introduction W H E N E M I LY A B E L finished six months of breast cancer surgery, chemotherapy, and radiation in 1993, she assumed her troubles were over. Doctors, friends, and family reassured her. She read scores of triumphalist breast cancer narratives; “Now I’m cured,” they all pronounced by way of conclusion. And everywhere she looked, she saw ads for hospitals and pharmaceuticals displaying radiantly healthy cancer survivors, restored to their families and careers. Emily soon realized, however, that breast cancer is a chronic condition . The disease can return at any time. Watchful waiting and second -guessing one’s body never end. Every blood test and doctor’s visit threatens to awaken what Alice Stewart Trillin dubbed “the dragon that sleeps inside anyone who has had cancer.”1 What was more unexpected was that lingering side effects of therapy also had made recovery elusive. When Emily complained about the overwhelming fatigue that persisted months and then years after finishing treatment, doctors explained that patients commonly experienced depression after cancer; perhaps she needed psychotherapy. Other breast cancer survivors, she was told, reported nothing like this. But when Emily revealed her problems to other survivors, several confessed their own. They mentioned not only fatigue but also a panoply of other sensations they never before had experienced. She also spoke to adult children of survivors who recalled their mothers profoundly altered by breast cancer that had struck many years earlier. One mother had abandoned the tennis games that previously filled her mornings. Another had jettisoned a cherished career. If these women had “beaten” the cancer, then why did their lives seem so different? Perhaps chemotherapy and radiation resembled other therapies that forestall death but often leave people with a raft of debilitating 2 Introduction problems. The 1921 discovery of insulin, for example, dramatically extended the lives of diabetic patients, but they soon faced a new set of devastating symptoms.2 The introduction of antiretrovirals in the 1990s converted an HIV diagnosis from a death sentence into a chronic disease for patients with access to the medication. Many breast cancer survivors , too, seemed to wrestle with an array of serious disabilities. When she met Saskia Subramanian, a medical sociologist, Emily suggested a research topic to her: how women who have completed breast cancer chemotherapy and radiation cope with ongoing problems that doctors fail to take seriously. The more Saskia listened to Emily, the angrier she became. Given her training as a women’s studies scholar, Saskia knew that male doctors sometimes labeled women’s health complaints as psychosomatic and then dismissed them. During the same period , Saskia’s mother was diagnosed with breast cancer, had surgery, and succumbed to the disease. Partly in her honor, Saskia began to read the proliferating sociological literature on patients’ perspectives, which examines illness within the context of individual lives, as well as an emerging medical literature documenting posttreatment side effects.3 That research lent credibility to survivors’ reports but left too many questions unanswered: What sense do women make of symptoms that persist long after the end of breast cancer treatment? What does it mean to live with these symptoms? How do cultural expectations of recovery shape women’s experiences? How much do women blame themselves when they fail to return to their “normal” health? How can various symptoms affect personal relationships, work lives, leisure activities, and religious commitments? How do women react to doctors who fail to take the symptoms seriously? How do variations among women, by age, race, and socioeconomic status, affect their responses to the symptoms ? The qualitative study we designed sought to address these issues. With funding from the Susan G. Komen Foundation, we posted flyers at various sites, describing our study and inviting women to participate . Breast cancer survivors were eligible if they were at least one year beyond breast cancer treatment and believed they still were experiencing its physical, emotional, or cognitive effects. (We defined treatment as surgery, radiation, and chemotherapy; a few participants still were receiving Tamoxifen, a hormone therapy.) The final sample included [44.200.179.138] Project MUSE (2024-03-29 03:24 GMT) Introduction 3 thirty-six African American and thirty-eight white women, who were interviewed from one to three hours.4 We soon faced three thorny issues. First, how much credence should we give to symptoms that women reported but that physicians could not verify? The most common posttreatment symptoms are fatigue and cognitive impairment, both of which can be known...