The most comprehensive guide available on hereditary cancers, from understanding risk, prevention, and genetic counseling and testing to treatment, quality of life, and more.
Up to 10 percent of cancers are caused by inherited mutations in specific genes. Finding out that you or your loved ones may be at increased risk of developing cancer because of a genetic mutation raises a lot of questions: Is cancer inevitable? Is there anything I should do differently in my life? Will my children also be at higher risk of cancer? Should I have preemptive treatments or surgery? This comprehensive guide provides answers to these questions and more.
Written by three passionate patient advocates, this book is a compilation of the trusted information and support provided for more than two decades by Facing Our Risk of Cancer Empowered (FORCE), the de facto voice of the hereditary cancer community. Combining the latest scientific research with national guidelines, expert advice, and compelling patient stories, the book offers previvors (those who have a mutation but have never been diagnosed), survivors, and their families the guidance they need to face the unique physical and emotional challenges of living in a high-risk body.
An ideal resource for genetic counselors, physicians, nurses, advocates, and others who support and care for the hereditary cancer community, Living with Hereditary Cancer Risk also provides coverage of
• signs of inherited cancer risk in a family; • the value of genetic counseling and testing; • mutations in BRCA, Lynch Syndrome, and other genes that elevate cancer risk;
• risk-reducing strategies;
• traditional treatments and newer personalized approaches, including immunotherapies and PARP inhibitors;
• nationally recommended guidelines for prevention, early detection, and treatment;
• insurance coverage and discrimination protections; and • coping with sexual health, fertility, menopause, and other quality of life issues.
List of Tables Foreword, by Matthew Boland Yurgelun, MD Introduction Part I. Understanding Cancer and Inherited Risk 1. The Link between Genetics and Cancer The Basics of Genetics Gene Wear and Tear and Repair How Cancers Develop and Grow Most Cancers Aren't Caused by Inherited Mutations 2. What's Swimming in Your Gene Pool? Hidden Risk in the Family Tree Plotting Your Genetic Pedigree 3. Signs of Hereditary Cancer The Value of Genetic Counseling Making Decisions about Testing Insurance Coverage Privacy and Protection 4. What Your Test Results Tell You Positive, Negative, Maybe Making Sense of Statistics You Have a Mutation; Now What? Part II. Inherited Gene Mutations and the Cancers They Cause 5. Introducing BRCA1 and BRCA2 Who Inherits a BRCA Mutation? Signs of a BRCA Mutation Levels of Risk 6. Lynch Syndrome: Five Genes, One Hereditary Syndrome Signs of Lynch Syndrome in Families Levels of Risk 7. Other Genes That Are Linked to Inherited Cancer Risk Less Known, Less Studied Genes 8. Breast Cancer Basics Signs and Symptoms What Affects Breast Cancer Risk? Types of Breast Cancer 9. Gynecologic Cancers Ovarian, Fallopian Tube, and Primary Peritoneal Cancers Endometrial Cancers 10. Gastrointestinal Cancers Colorectal Cancer Small Bowel Cancer Pancreatic Cancer Stomach Cancer Anal Cancer 11. Genitourinary Cancers Prostate Cancer Bladder, Ureter, and Renal Pelvis Cancers 12. Melanoma Melanoma of the Skin Ocular Melanoma Part III. Strategies for Risk Reduction and Early Detection 13. Risk Management Guidelines Guidelines for BRCA1 or BRCA2 Gene Mutations Guidelines for Lynch Syndrome Gene Mutations Guidelines for Mutations in Other Genes 14. Early Detection Strategies for High-Risk People The Vocabulary of Screening Surveillance for Breast Cancer Surveillance for Gynecologic Cancers Surveillance for Gastrointestinal Cancers Surveillance for Prostate and Other Genitourinary Cancers Surveillance for Melanoma Screening for Other Hereditary Cancers 15. Medications That Reduce Cancer Risk Risk-Reducing Medications for Breast Cancer Risk-Reducing Medications for Gynecologic Cancers Risk-Reducing Medications for Colorectal Cancers 16. Surgeries That Reduce Breast Cancer Risk Mastectomy Procedures Breast Reconstruction Choices Side Effects, Risks, and Recovery 17. Surgeries That Reduce the Risk of Gynecologic Cancers Salpingo-Oophorectomy to Reduce the Risk of Ovarian Cancer Hysterectomy to Reduce the Risk of Endometrial Cancer 18. Surgeries That Reduce the Risk of Gastrointestinal Cancers Total and Segmental Colectomy to Reduce the Risk of Colon Cancer Total Gastrectomy to Reduce the Risk of Stomach Cancer 19. Factors That Affect Cancer Risk Nutrition, Weight, and Physical Activity Alcohol: An Unwise Choice Smoking and Tobacco Products Other Lifestyle and Behavioral Risk Factors Part IV. Treatment Choices for Hereditary Cancers 20. Identifying Tumor Characteristics That Inform Treatment Choices Staging and Grading Cancer Targeted Approaches to Treatment DNA Damage Repair Genes 21. Treating Breast Cancer Cancer Type, Subtype, and Stage Biomarker Testing Genetic Testing Options for Treatment Follow-Up Care 22. Treating Gynecologic Cancers Options for Ovarian, Fallopian Tube, and Primary Peritoneal Cancers Options for Endometrial Cancer 23. Treating Gastrointestinal Cancers Options for Colorectal Cancer Options for Pancreatic Cancer Options for Gastric Cancer 24. Treating Genitourinary Cancers Options for Prostate Cancer Options for Bladder, Renal Pelvis, and Ureter Cancers 25. Treating Melanoma Options for Melanoma in the Skin Options for Ocular Melanoma Part V. Living with Inherited High Risk 26. Regaining Sexual Health and Intimacy Body Image Coping with Pain Reduced Sexual Desire Erectile Dysfunction Rebuilding Intimacy 27. Effects of Prevention and Treatment on Fertility Preserving Fertility in Women Preserving Fertility in Men Other Parenting Alternatives 28. Managing Menopause Symptoms of Early Menopause Replacement Hormones Long-Term Side Effects 29. Side Effects and Other Quality-of-Life Issues Summarizing Side Effects by Treatment Managing Immediate Side Effects Long-Term Effects of Prevention and Treatment Previvorship, Survivorship, and Follow-Up Care End-of-Life Issues 30. Making Difficult Decisions Start at the Beginning: Should You Be Tested? Decisions about Your Cancer Risk Decisions about Treatment Prevention and Treatment Clinical Trials Decision-Making in 15 Steps 31. You Are Not Alone Create a Support System Find Emotional Strength Pursue Financial Resources Look to the Horizon Acknowledgments Glossary Notes Resources Index
Kathy Steligo (SAN CARLOS, CA) is the author of The Breast Reconstruction Guidebook and the coauthor of Confronting Chronic Pain and The Breast Cancer Book. She is a two-time breast cancer survivor. Sue Friedman, DVM (GULFPORT, FL), the founder and executive director of Facing Our Risk of Cancer Empowered (FORCE), is a breast cancer survivor with a BRCA2 mutation. Allison W. Kurian, MD, MSc (STANFORD, CA) is a clinical oncologist and the director of the Stanford Women's Clinical Cancer Genetics Program.
