Waiting for Cancer to Come
Women’s Experiences with Genetic Testing and Medical Decision Making for Breast and Ovarian Cancer
A narrative-driven exploration of the effects of BRCA genetic testing on the lives of at-risk women
Waiting for Cancer to Come tells the stories of women who are struggling with their high risk for cancer. Based on interviews and surveys of dozens of women, this book pieces together the diverse yet interlocking experiences of women who have tested positive for the BRCA 1/2 gene mutations, which indicate a higher risk of developing breast and ovarian cancer. Sharlene Hesse-Biber brings these narratives to light and follows women’s journeys from deciding to get screened for BRCA, to learning the test has come back positive, to dealing with their risk. Many women already know the challenges of a family history riddled with cancer and now find themselves with the devastating knowledge of their own genetic risk. Using the voices of the women themselves to describe the under-explored BRCA experience, Waiting for Cancer to Come looks at the varied emotional, social, economic, and psychological factors at play in women’s decisions about testing and cancer prevention.
Praise / Awards
"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
"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
"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
"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
"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."
"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
"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
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