Waiting for Cancer to Come: Women’s Experiences with Genetic Testing and Medical Decision Making for Breast and Ovarian Cancer

227 Pages·2014·5.118 MB·English

by  Sharlene Hesse-Biber

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Waiting for Cancer to Come
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Waiting for Cancer to Come
Women’s Experiences with
Genetic Testing and Medical Decision Making
for Breast and Ovarian Cancer
Sharlene Hesse- Biber
The University of Michigan Press
Ann Arbor
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Copyright © by the University of Michigan 2014
All rights reserved
This book may not be reproduced, in whole or in part, including illustrations,
in any form (beyond that copying permitted by Sections 107 and 108 of the
U.S. Copyright Law and except by reviewers for the public press), without
written permission from the publisher.
Published in the United States of America by
The University of Michigan Press
Manufactured in the United States of America
c Printed on acid- free paper
2017 2016 2015 2014 4 3 2 1
A CIP catalog record for this book is available from the British Library.
Library of Congress Cataloging- in- Publication Data
Hesse- Biber, Sharlene Nagy
Waiting for cancer to come : women’s experiences with genetic testing &
medical decision making for breast and ovarian cancer / Sharlene Hesse- Biber.
p. cm.
Includes bibliographical references and index.
ISBN 978- 0- 472- 07219- 4 (hardcover : alk. paper)— ISBN 978- 0- 472-
05219- 6 (pbk. : alk. paper)— ISBN 978- 0- 472- 12035- 2 (e- book)
I. Title.
[DNLM: 1. Genetic Testing— Personal Narratives. 2. Hereditary
Breast and Ovarian Cancer Syndrome— genetics— Personal Narratives.
3. Decision Making— Personal Narratives. 4. Women’s Health— Personal
Narratives. WP 870]
RC280.B8 2014
616.99'449042— dc23
2014005568
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To my incredible and courageous sister,
Janet Green Fischer,
with love and remembrance.
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Contents
Prologue 1
1 The Genetic Testing Industry:
Capitalizing on Fear, Selling Empowerment 15
2 Ready for the Test 43
3 “You’re BRCA Positive” 63
4 Waiting and Watching 85
5 The Surgical Fix 106
6 Finding a New Normal 126
7 Toward Empowerment 149
E pilogue: Through Their Eyes:
Studying Women’s Health 173
Bibliography 193
Index 207
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Acknowledgments
First, my thanks go to the inspirational women who participated in the
interviews for my study, who bravely agreed to share their experiences of
genetic testing and the myriad of medical decision making they confronted
on their BRCA journey. Their courage, wisdom, and willingness to share
their stories with me—a nd my readers— is tremendously appreciated. I am
extremely honored by their presence in this research project.
Many thanks to the Boston College community that contributed gener-
ously to this project. I want to especially thank Dr. David Karp, Professor
of Sociology, Boston College, for his expert advice throughout the various
stages of this research project. I also want to extend my gratitude to Boston
College’s Office of Research Administration for providing research grants to
support this project. In particular, I wish to thank Dean William Petri for his
support and encouragement as I continued forward on my research journey.
I am grateful to Karen Taylor’s careful reading of the manuscript and her
insightful editorial suggestions. Special thanks also go to Boston College
undergraduates, Alicia Johnson, class of 2010; Elizabeth Jekanowski, class of
2013; and Mary Downer, class of 2011. They each brought unique intuition
and inspiration to the project. Their excellent research skills and editorial
assistance with chapter revisions and data analysis provided me with insights
and consensual validation of my research findings.
Along the way, many others supported and assisted in this project and I
am particularly grateful to the enthusiastic support and dedicated efforts of
Boston College undergraduate Hilary Flowers, class of 2009; and Jennifer
Hotaling, graduate student in the School of Education at Boston College,
class of 2013.
I am grateful to my daughters, Sarah Alexandra and Julia Ariel, for their
patience, humor, love, kindness, and enthusiastic support for my combining