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PHILOSOPHY AND MEDICINE The Voice of Breast Cancer in Medicine and Bioethics Edited by Mary C. Rawlinson and Shannon Lundeen THE VOICE OF BREAST CANCER IN MEDICINE AND BIOETHICS Philosophy and Medicine VOLUME 88 Founding Co-Editor Stuart F. Spicker Editor H. Tristram Engelhardt, Jr.,Department of Philosophy, Rice University, and Baylor College of Medicine, Houston, Texas Assistant Editor Lisa Rasmussen, University of North Carolina, Charlotte, North Carolina Associate Editor Kevin Wm. Wildes, S.J.,Department ofPhilosophy and Kennedy Institute of Ethics, Georgetown University, Washington, D.C. Editorial Board George J. Agich, Department of Bioethics, The Cleveland Clinic Foundation, Cleveland, Ohio Nicholas Capaldi,Department of Philosophy, University of Tulsa, Tulsa, Oklahoma Edmund Erde, University of Medicine and Dentistry of New Jersey,Stratford, New Jersey Eric T. Juengst,Center for Biomedical Ethics, Case Western Reserve University, Cleveland, Ohio Christopher Tollefsen,Department of Philosophy, University of South Carolina, Columbia, South Carolina Becky White, Department of Philosophy, California State University, Chico, California The titles published in this series are listed at the end of this volume THE VOICE OF BREAST CANCER IN MEDICINE AND BIOETHICS Edited by MARYC. RAWLINSON Stony Brook University, Stony Brook, NY,U.S.A. and SHANNON LUNDEEN University of Pennsylvania, Philadelphia, PA, U.S.A. AC.I.P. Catalogue record for this book is available from the Library of Congress. ISBN-10 1-4020-4508-5 (HB) ISBN-13 978-1-4020-4508-0 (HB) ISBN-10 1-4020-4477-1 (e-book) ISBN-13 978-1-4020-4477-9 (e-book) Published by Springer, P.O. Box 17, 3300 AADordrecht, The Netherlands. www.springer.com Printed on acid-free paper All Rights Reserved © 2006 Springer No part of this work may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, microfilming, recording or otherwise, without written permission from the Publisher, with the exception of any material supplied specifically for the purpose of being entered and executed on a computer system, for exclusive use by the purchaser of the work. Printed in the Netherlands. TABLE OF CONTENTS ACKNOWLEDGEMENTS vii INTRODUCTION NegotiatingPersonal and Political Settlementswith Breast Cancer: Women Finding Their Own Ways to Live with Human Contingency Rosemarie Tong . . . . . . . . . . . . . . . ix DISCOURSES OF BREAST CANCER:WHOSPEAKS FOR BREASTCANCER? 1. Personalizing the Political: Negotiating the Feminist, Medical, Scientific, and Commercial Discourses Surrounding Breast Cancer Susan Sherwin . . . . . . . . . . . . . . . 3 2. Power, Gender, and Pizzazz: The Early Years of Breast Cancer Activism Barron Lerner . . . . . . . . . . . . . . . 21 3. Breast Cancer: Dueling Discourses and the Persistence of an Outmoded Paradigm Gwynne Gertz . . . . . . . . . . . . . . . 31 4. Doing Things with Ideas and Affects in the Illness Narratives Of Susan Sontag and Eve Kosofsky Sedgwick Lisa Diedrich . . . . . . . . . . . . . . . 53 NARRATIVES OF BREAST CANCER:LIVING WITH DISEASE 5. The Breast Cancer Diaries Anita Ho . . . . . . . . . . . . . . . . . 71 6. Breast Cancer: The Maternal Body Reflected in a Three-way Mirror Debra Gold . . . . . . . . . . . . . . . . 89 vi TABLE OF CONTENTS 7. Leatha Kendrick . . . . . . . . . . . . . . . 95 8. Death and the Other: Rethinking Authenticity Gail Weiss . . . . . . . . . . . . . . . . 103 BREASTCANCER AS A MODEL IN CLINICAL RESEARCH 9. Breast Cancer Research: A Political Cause and Paradigm for Scientific Inquiry John S. Kovach . . . . . . . . . . . . . . . 119 10. Clinical Trials for Breast Cancer and Informed Consent: How Women Helped Make Research a Cooperative Venture Loretta M. Kopelman . . . . . . . . . . . . . . 133 11. The Role of Psychosocial Research in Understanding and Improving the Experience of Breast Cancer and Breast Cancer Risk Anne Moyer and Marci Lobel . . . . . . . . . . . 163 BREASTCANCER IN THE CLASSROOM 12. Teaching about Breast Cancer and “Common Health” Helen Rodnite Lemay . . . . . . . . . . . . . . 185 13. Theoretical Considerations on “Reading” the Breast Tanfer Emin-Tunc . . . . . . . . . . . . . . 195 14. Recent Developments in Breast Cancer Research Sofya Maslyanskaya . . . . . . . . . . . . . . 203 ACKNOWLEDGEMENTS This book grew out of a conference on breast cancer sponsored by the Program in Women’s Studies at Stony Brook University in 2002. Professors Sherwin, Lerner, Kovach, Diedrich, and Lobel participated in the conference which was organized by Helen Rodnite Lemay and Mary C. Rawlinson. The editors would like to thank Lisa Rasmussen, the Managing Editor of the Philosophy and Medicine book series, for her generous support and assistance in bringing the volume to publication. INTRODUCTION ROSEMARIE TONG NEGOTIATING PERSONAL AND POLITICAL SETTLEMENTS WITH BREAST CANCER Women Finding Their Own Ways to Live with Human Contingency Yesterday as I was pushing my shopping cart up and down the aisles of the grocery store, my eyes glanced over to the tabloid rack. I immediately noticed that the feature story in the Globe was an exclusive interview entitled “Jacklyn Smith Wins Battle with Breast Cancer” (Globe 2003). Making sure no one I know saw me, I plunked my money down for the scandal sheet and took it home where my prurient interests got the best of me. I read the whole issue, although I had initially planned to read only the Jacklyn Smith story. Not surprisingly, Smith’s breast-cancer story had a familiar plot line. Her narrative began with her fears about disfigurement and even death; progressed to her “courageous” decision to consent to a lumpectomy with subsequent radiation; and ended with a radiant (and very sexy) Jacklyn Smith holding up her “clean bill of health” as she returned full force to her work and relationships. Why, I wondered, is the Globe making it sound as if Smith’s experience is somehow extraordinary and exceptional, when 220,000 new cases of breast cancer in the U.S. were reported in 2002 alone? Far from being unique, Jacklyn Smith’s story is increasingly the one many breast-cancer patients tell. And yet, despite the fact that more women are living well with breast cancer than dying badly from it, American women continue to fear breast cancer much more than the actual number one killer of American women: cardiac disease. In large measure, this anthology, skillfully assembled by philosophers Mary Rawlinson and Shannon Lundeen, explains the many reasons why breast cancer in particular continues to occupy U.S. women’s attention. In the lead essay, philosopher Susan Sherwin addresses the politics of cancer in her probing chapter entitled “Personalizing the Political: Negotiating Feminist, Medical, Scientific, and Commercial Discourses Surrounding Breast Cancer.” Sherwin begins by highlighting the “dualisms” that characterize breast-cancer debates; it’s largely ix x ROSEMARIE TONG genetically-determined…no, it’s mostly environmentally-produced; it’s being cured…no, it’s on the rise; be a cheerful cancer patient with a smiley face…no, be a realistic cancer patient with eyes wide open; and so on. Sherwin’s multiperspectival analysis of breast cancer is informed by her feminist sensitivities. In particular, her thoughts are guided by the omnipresent question, “Who benefits and who is harmed by the existing policies?” Is it women with breast cancer? Or is it researchers who want to be famous; pharmaceutical companies who want to increase profits; and/or politicians who want to be elected? Sherwin reminds us that in the 1970s women helped politicize the personal—in this instance, the very personal experience of breast cancer. Among others, Shirley Temple Black, Happy Rockefeller, and Betty Ford told their breast-cancer stories in public. They thereby encouraged women to bring the breast cancer they had hidden in their bedrooms and bathrooms out into the public domain. Soon thousands of women were talking to each other and to anyone else who would listen about their disease. Various segments of the public started to “racing” for the cure, participating in fundraising marathons and lobbying Congress for higher breast-cancer-research appropriations. Women were urged to self-exam their breasts and to get mammograms on an annual basis. Breast-cancer support groups multiplied, and, eventually, a whole month was devoted to increasing breast cancer awareness. But breast cancer’s acceptance into the public domain was not without its problems. Sherwin observes that cancer became so political that many women felt that their own breast cancer—their own personal worries and pains—had to be experienced in a certain way. Sherwin claims that two metaphors—that of breast cancer as an enemy against whom war must be waged, and that of women’s bodies as the terrain on which the enemy advances—created a framework of “danger, urgency, and fear” (p. 12). Women were expected to fight the enemy with the weapons in medicine’s arsenal. To fail to fight the enemy to the finish was to be viewed as either a crazy woman or a coward. While recognizing the role of biomedical tools in arresting breast cancer’s assault on women’s bodies, Sherwin notes that the breast-cancer establishment has focused on surgery, radiotherapy, chemotherapy, and pharmacotherapy without exploring in any real depth other ways to treat breast cancer, some of which may be found in the annals of alternative and complementary medicine, for example. Nor has the breast-cancer establishment, at least of late, focused enough attention on the possible environmental causes of breast cancer. Could it be that there is more money to be made and fame to be had in finding a spectacular cure for breast cancer than in quietly preventing its inception? In other words, could it be that it is more glamorous to wage war on an acute disease than to make peace with a chronic disease—to live as well as one can with it? Sherwin encourages each woman who has breast cancer to feel free to “depoliticize” her breast cancer and to come to terms with it in her own unique way. It is not irrational for a breast-cancer victim to refuse radiotherapy and/or chemotherapy; nor is it weird for her to refuse breast reconstruction subsequent to breast-cancer surgery. Different people have different priorities and values, and