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After the Cure

After the Cure: The Untold Stories of Breast Cancer Survivors

Emily K. Abel
Saskia Subramanian
with a foreword by Patricia A. Ganz
Copyright Date: 2008
Published by: NYU Press
Pages: 203
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  • Book Info
    After the Cure
    Book Description:

    2009 Choice Outstanding Academic Title2009 Association of American University Presses Award for Jacket DesignChemo brain. Fatigue. Chronic pain. Insomnia. Depression. These are just a few of the ongoing, debilitating symptoms that plague some breast-cancer survivors long after their treatments have officially ended. While there are hundreds of books about breast cancer, ranging from practical medical advice to inspirational stories of survivors, what has been missing until now is testimony from the thousands of women who continue to struggle with persistent health problems.After the Cure is a compelling read filled with fascinating portraits of more than seventy women who are living with the aftermath of breast cancer. Emily K. Abel is one of these women. She and her colleague, Saskia K. Subramanian, whose mother died of cancer, interviewed more than seventy breast cancer survivors who have suffered from post-treatment symptoms. Having heard repeatedly that "the problems are all in your head," many don't know where to turn for help. The doctors who now refuse to validate their symptoms are often the very ones they depended on to provide life-saving treatments. Sometimes family members who provided essential support through months of chemotherapy and radiation don't believe them. Their work lives, already disrupted by both cancer and its treatment, are further undermined by the lingering symptoms. And every symptom serves as a constant reminder of the trauma of diagnosis, the ordeal of treatment, and the specter of recurrence.Most narratives about surviving breast cancer end with the conclusion of chemotherapy and radiation, painting stereotypical portraits of triumphantly healthy survivors, women who not only survive but emerge better and stronger than before. Here, at last, survivors step out of the shadows and speak compellingly about their "real" stories, giving voice to the complicated, often painful realities of life after the cure.This book received funding from the Susan G. Komen Foundation.

    eISBN: 978-0-8147-0777-7
    Subjects: Sociology

Table of Contents

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  1. Front Matter
    (pp. i-iv)
  2. Table of Contents
    (pp. v-vi)
  3. Acknowledgments
    (pp. vii-viii)
  4. Foreword
    (pp. ix-xii)
    Patricia A. Ganz

    DURING THE SPAN of my career in medicine, breast cancer has been transformed from a disease that was hidden from family and friends to one that has a public face with a strong advocacy movement. Most women and men have familiarity with the diagnosis and treatment of breast cancer based on frequent newspaper and magazine articles, including descriptions of the medical treatment of high-profile celebrities and public figures. Less well-known are some of the difficulties faced by women who have been treated for breast cancer. In this volume, the authors provide an in-depth exploration of the symptoms experienced by some...

  5. Introduction
    (pp. 1-18)

    WHEN EMILY ABEL 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...

  6. 1 “Standing on New Ground”
    (pp. 19-38)

    ALTHOUGH MEDICAL RESEARCHERS have begun to investigate a number of posttreatment symptoms, we wanted to know how survivors themselves understood their various complaints. Greta Shaw began by discussing a problem that is virtually absent from the existing literature:

    One of the roughest things is that a month after I finished radiation I woke up with a salty taste in my mouth. The salty taste in my mouth has basically stayed and never left. Certain days are worse than others, and along with the saltiness as time went on I have this area on the side of my tongue that feels...

  7. 2 “We Saved Your Life. Now Leave Us the Hell Alone”
    (pp. 39-64)

    PAT GARLAND HAS little good to say about any of the doctors she saw either during or after cancer. When we interviewed her in her small studio apartment, eleven years had elapsed since she learned that a breast lump was malignant. Nevertheless, she vividly recalled that moment:

    To start out, it’s not routine, but they treat it as routine. I remember when I was diagnosed, and the doctor told me that I had breast cancer that afternoon. And when I stood up my legs went out from under me; they were wobbly. He said, “Oh, you’re having a terrible reaction.”...

  8. 3 Remedying, Managing, and Making Do
    (pp. 65-80)

    LEANNE THOMAS NEVER expected doctors to resolve the many health problems she faced after breast cancer treatment. “I’m not one for taking a lot of medications,” she told us. “I’m one for holistic. My family didn’t go to doctors. They had things that you took that you didn’t have to go to doctors for, natural things.” Physicians were able to use her family history, which included the deaths of her mother and three aunts from breast cancer, to convince Leanne to undergo five months of chemotherapy and six weeks of radiation. Once her treatment was over, she relied on self-help...

  9. 4 “Like Talking to a Wall”
    (pp. 81-96)

    THREE AFRICAN AMERICAN women met during a focus group to discuss the ways breast cancer affects social relationships both during and after therapy. Ida Jaffe began:

    My family was very supportive in helping me. My husband was very supportive, and I have two daughters, and they were just right there for me. But I did have an experience with a so-called friend. I’ll say a so-called friend because she was there through all of the initial part of the treatment, right at the beginning and everything. Then after all the chemo and radiation and everything was over, and I was...

  10. 5 Narrowed Lives
    (pp. 97-118)

    ALTHOUGH ROSE JENSEN used to work as an engineer, she is now an office manager. Interviewed during two successive lunch hours, she began by explaining why she has a job far beneath her ambitions and qualifications:

    I went from someone who kept phenomenal amounts of very sophisticated, concrete data in my head to someone who can’t get out of the house in the morning without making a list. When I was diagnosed I was the project manager for a twenty-four-million-dollar government project retrofitting military aircraft. I had thousands of engineering drawings and concepts in my head. I had names and...

  11. 6 “Turning a Bad Experience into Something Good”
    (pp. 119-138)

    BECAUSE MARGE BAR LOW was writing a Ph.D. dissertation while undergoing breast cancer therapy, her memory loss was especially troubling. But during our long conversation in her tiny Craftsman-style house, we realized that she is more likely to be derailed by an expanded sense of self than by a diminished one. Following many other women, she emphasized the impact of a breast cancer diagnosis. In her case, it had not been all bad. “Let me backtrack,” she began:

    The six months preceding my diagnosis were the worst period of my life emotionally. I had the dissertation I was working on,...

  12. Conclusion
    (pp. 139-142)

    “THE HEALING PROCESS begins,” according to physician Rita Charon, “when patients tell of symptoms or even fears of illness—first to themselves, then to loved ones, and finally to health professionals.”¹ In the stories we heard, that process was badly flawed. The primary response of “loved ones” was to urge the women to ignore their symptoms and move on with their lives. Many survivors went from doctor to doctor, seeking one who would validate their experiences and offer relief.

    Even problems that severely constrained central life activities were dismissed as trivial or nonexistent. The absence of medical certification impeded efforts...

  13. Epilogue
    (pp. 143-148)

    BECAUSE POST TREATMENT SYMPTOMS are long-term, we wanted to know how they change over time. In the spring of 2007, approximately five years after the initial interviews, we spoke again to ten of the eleven women who figure most prominently in this book. (The remaining woman could not be contacted.) Only one survivor had experienced a recurrence of breast cancer. We also were happy to learn that in some cases the symptoms had improved. Several women, however, continue to struggle with serious health problems.

    Marge Barlow’s career dilemma resolved “accidentally.” The year after we first spoke with her, a large...

  14. Appendix
    (pp. 149-152)
  15. Notes
    (pp. 153-168)
  16. Index
    (pp. 169-182)
  17. About the Authors
    (pp. 183-184)