Download PDF Waiting for Cancer to Come: Women’s Experiences with Genetic Testing and Medical Decision Making for Breast and Ovarian Cancer
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Waiting for Cancer to Come: Women’s Experiences with Genetic Testing and Medical Decision Making for Breast and Ovarian Cancer
Download PDF Waiting for Cancer to Come: Women’s Experiences with Genetic Testing and Medical Decision Making for Breast and Ovarian Cancer
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Review
"This is a remarkable and vitally-important book...[Hesse-Biber's] review of relevant literature is comprehensive, thoughtful, and gracefully integrated into the overall narrative of the book. Women who are considering genetic testing for breast or ovarian cancer ought to read this book, and of course so should professionals, psychotherapists, and family members, and friends--it is a genuinely helpful and informative." --International Human Science Research Newsletter"From the beginning poem and compelling anecdote to the conclusion, Sharlene Hesse-Biber tells an absorbing story of issues and events leading to or avoiding testing for the BRCA genetic mutation in her interviewees' lives. She gives the reader an intimate view of women's (and several men's) lives, offers a sensitive analysis of their situations, and explains the implications of their choices. Professor Hesse-Biber dispels any notion that women with the BRCA mutation or those with other types of breast cancer face the same questions. Instead, their specific situations, goals, and relationships shape how they respond to the test and to waiting for and having cancer. This book reveals the ambiguities and ambivalent choices that testing positive causes and confirms that testing negative does not necessarily put an end to ominous questions. Waiting for Cancer to Come shows how hard it is to choose between treatment alternatives. No treatment choice ends uncertainty for these women, even though some women try to view their treatment, such as seeking a prophylactic mastectomy, as symbolizing an end to uncertainty. However, Professor Hesse-Biber portrays how uncertainty persists with haunting consequences."" —Kathy Charmaz, Sonoma State University (Kathy Charmaz, Sonoma State University)"The book is a testament to the value of avoiding the fragmentation of women's stories and depicting the rich complexity of the fabric of their lives that emerges through their own words; it not only draws out this diversity and complexity but also contextualises it in its social, political and economic context." ---Sociology of Health and Illness (Sophie Rees Sociology of Health and Illness 2015-04-16)"Sharlene Hesse-Biber’s new book Waiting for Cancer to Come offers insight into the complexity of living in a genomic age... Waiting for Cancer to Come is a must read for those interested in women’s health, science and technology studies, medical sociology, and feminist and qualitative methods." ---Breast Cancer Consortium (Gayle Sulik Breast Cancer Consortium 2015-01-08)"Sociologist Hesse-Biber is well regarded for her work on research methodologies ... Her most recent book, Waiting for Cancer to Come, presents qualitative analysis of over 60 in-depth interviews with women who have tested positive for genetic mutations that increase their risk of developing breast or ovarian cancer, and effectively demonstrates feminist, mixed-methods research. ... Throughout the rest of the book, Hesse-Biber prioritizes the voices and experiences of women as they calculate their cancer risk, make decisions to undergo major surgery or opt for increased surveillance, and negotiate the new normal of their lives after a positive test." ---CHOICE (A. M. Baldwin, Indiana University, Bloomington CHOICE)"I highly recommend this book to doctors, genetic counselors, advocates, and anyone else interested in truly understanding the complexity behind the variables of genetic testing." ---Georgia Hurst, Beyond Risk (Georgia Hurst Beyond Risk)"Waiting for Cancer to Come is an outstanding accomplishment. Sharlene Hesse-Biber innovatively weaves the interviews with research on the genetic testing industry and new ways in which one can think about breast cancer and the pharmaceutical/BRCA testing industries that accompany this epidemic. She is very well versed in interviewing techniques, as well as in conducting archival and related research. The documentation of the research and how it was conducted makes it possible for readers to know exactly what was done, when, and how the analysis has been pursued, and to be able to put together these disparate sources is a real tour de force!" —Kum-Kum Bhavnani, University of California, Santa Barbara (Kum-Kum Bhavnani, University of California, Santa Barbara)
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About the Author
Sharlene Hesse-Biber is Professor of Sociology and the Director of Women’s Studies & Gender Studies Program at Boston College.
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Product details
Hardcover: 226 pages
Publisher: University of Michigan Press; 1 edition (July 28, 2014)
Language: English
ISBN-10: 0472072196
ISBN-13: 978-0472072194
Product Dimensions:
6.2 x 1 x 9 inches
Shipping Weight: 1.2 pounds (View shipping rates and policies)
Average Customer Review:
4.0 out of 5 stars
1 customer review
Amazon Best Sellers Rank:
#2,796,740 in Books (See Top 100 in Books)
Waiting for Cancer to Come is a very brave and thoughtful book that explores the experiences of women who have tested positive for a gene that is associated with a high risk of developing breast and/or cervical cancer. The issue got a lot of visibility when Angeline Jolie made public that she had carried the BRCA gene and that she subsequently made a decision to have a radical mastectomy. Hesse-Biber does not get into the celebrity and sensationalizing of this condition. Rather, she approaches it from a caring researchers' perspective, bringing the voices of these women to us so that we can understand their histories with cancer, their experiences with diagnosis, and their decisions regarding next steps. The author also takes on the medical industrial complex that has made huge profits by scaring women into getting tested and making false promises that getting this test will empower women to be cured of cancer. Testing is expensive, requires appropriate psychological support when getting the results, and is not alwasy definitive. One crucial fact is that testing does not cure cancer. Women who do test positive for the BRCA gene need to process the meaning of the results and make decisions about appropriate next steps.One path of decision making is to decide to wait for cancer to come; that is to establish a surveillance strategy that allows a woman to keep her breasts, cervix, and ovaries - for whatever period of time she decided. Younger women who have not yet had families are more inclined to adopt a surveillance strategy that combines MRIs and mammographies. The decision is complicated by many factors - such as if the woman is not yet in a relationship that would support having children. If she is dating, when does she tell her partner that she is BRCA positive?Older women (and some younger women who have watched as other family members died of cancer) are more inclined to have their breasts, uterus, and ovaries removed - especially if they have already had children. Yet, again it is not a simple decision. Women struggle with the emotional impact of removing a part of themselves that is associated with being a woman.People who should read this book include women with the BRCA gene, their families, doctors, genetic counselors, gynecologists, oncologists, and any one who has a friend who is facing this crisis.The book is very well written and opens with a very powerful poem that weaves together the stories of the women who were interviewed for the book. The women come alive in their words and their expressions of emotions about their own conditions and their experiences with their families, friends, and medical personnel.A limitation of the book which Hesse-Biber does recognize is that it does not include women from racial/ethnic minority groups. It also does not address the BRCA gene in men. Both of these omissions deserve attention. An issue that was not discussed in the book but that I think has merit is the ethical decision making of the women, once they know they are BRCA positive to have children to whom they might pass on the gene. This would have been an interesting topic to pursue.
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