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Confronting HBOC

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Book coverConfronting Hereditary Breast and Ovarian Cancer: Identify Your Risk, Understand Your Options, Change Your Destiny

By Sue Friedman, D.V.M., Rebecca Sutphen, M.D., and Kathy Steligo


Foreword

It is both fitting and instructive that Confronting Hereditary Breast and Ovarian Cancer should come to us now, some seventeen years after the identification of the BRCA1 and BRCA2 cancer-susceptibility genes: fitting in that it meets an urgent need for a trusted source of authoritative information, and instructive in demonstrating how far the hereditary breast and ovarian cancer (HBOC) field has progressed since those paradigm-altering observations were made. This important guide can direct our research focus in the years ahead, as we strive to optimize quality of life, management, and survival among persons at increased genetic risk of breast and ovarian cancer.

A glance at the table of contents reveals a comprehensive list of the challenges faced by all carriers of rare cancer-susceptibility genes, ranging from an introduction to genetic principles, through risk assessment and genetic testing, to surgical and medical management, with each topic beautifully illustrated using the specific example of HBOC. The substance of each chapter is impeccably accurate, and the authors honestly acknowledge the limits of our current understanding of this incredibly complex disorder. Where all the facts are not yet known, they present the carefully considered best medical judgment of investigators and providers who have devoted their careers to the study of HBOC, informed and shaped by those carrying BRCA mutations as well as the important people in their lives.

The voices of these women are heard loud and clear throughout the text; they give the information presented here a genuine and legitimate quality that will surely resonate with readers as they struggle to come to terms with what it means to carry a BRCA1/2 mutation. Consequently, Readers will know that, without a doubt, they are hearing from people who have been there and survived, people who now share their hard-won wisdom and insight in an effort to ease the path for those who follow in their footsteps.

The authors employ several novel organizational strategies in an effort to convey their message as clearly as possible. “Expert View” sections give voice to leaders in HBOC research and care; “My Story” sections share the heartfelt words of women who have direct experience with the topic under discussion; and “The FORCE Perspective” sections describe the current positions of the organization that have led the effort to give women from HBOC families a voice in their own fate. All three add greatly to the effectiveness of the educational effort embodied by this book. It is filled with pearls of wisdom that can only come from those who speak from firsthand experience. Examples include the unassailable assertion that genetic counseling must be seen as an ongoing, open-ended process rather than a one-time event, and the discussion of the pros and cons of various surgical approaches to risk-reducing mastectomy.

As a clinician and investigator who has been involved in evaluating HBOC families for the past 35 years, since long before the identification of BRCA1/2, I remember all too well the frustrations we faced due to the lack of data upon which to base management recommendations for the pioneering women who participated in our research studies in the 1970s and 1980s. I also remember the anguish of women from multiple-case families who all regarded themselves as destined to develop breast and/or ovarian cancer, because of our inability to identify the specific family members who were at genetic risk. It was heartbreaking to realize that many of the women from that era who elected risk-reducing breast and ovarian surgery likely did not carry the mutated gene that formed the basis for their family’s cancer risk. Perhaps the single greatest difficulty faced by BRCA mutation carriers as they struggled to manage their risk was the lack of reliable, consistent, authoritative information from their healthcare providers, with contradictory recommendations being distressingly common.

This book should go a long way toward making that unacceptable status quo a thing of the past. And for that, future generations of BRCA mutation carriers can thank the indomitable and tireless FORCE organization for insisting that women have the information they need to maximize their long-term survival.

Mark H. Greene, M.D.
Chief, Clinical Genetics Branch
National Cancer Institute
Bethesda, Maryland


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