Additional Resources

People who are affected by hereditary cancer risk may need some additional support. Below is a list of resources, which include websites, support groups/networks, books/reading materials, and more for many hereditary cancer syndromes. This is not a list of every resource available to the hereditary cancer risk community, so please contact our genetics team with any questions or to set up a consultation to discuss your risk and support options.

Basics of Genetics

Books

"A Cancer in the Family: Take Control of Your Genetic Inheritance" by Theodora Ross, M.D., Ph.D.

There are 13 million people with cancer in the United States, and it’s estimated that about 1.3 million of these cases are hereditary. Yet despite advanced training in cancer genetics and years of practicing medicine, Dr. Theo Ross was never certain whether the history of cancers in her family was simple bad luck or a sign that they were carriers of a cancer-causing genetic mutation. Then she was diagnosed with melanoma, and for someone with a dark complexion, melanoma made no sense. It turned out there was a genetic factor at work.
 
Using her own family’s story, the latest science of cancer genetics, and her experience as a practicing physician, Ross shows readers how to spot the patterns of inherited cancer, how to get tested for cancer-causing genes, and what to do if you have one. With a foreword by Siddartha Mukherjee, prize winning author of The Emperor of All Maladies, this will be the first authoritative, go-to for people facing inherited cancer, this book empowers readers to face their genetic heritage without fear and to make decisions that will keep them and their families healthy.

Ataxia Telangiectasia (ATM)

Birt Hogg Dube Syndrome (FLCN)

Cowden Syndrome/PTEN Hamartoma Syndrome (PTEN)

Familial Adenomatous Polyposis (APC)

Familial Atypical Mole and Malignant Melanoma (CDKN2A (p16)/CDK4)

Fanconi Anemia (BRCA2, BRIP1, PALB2, RAD51C, etc.-autosomal recessive)

Gorlin Syndrome/Nevoid Basal Cell Carcinoma syndrome (PTCH)

Hereditary Breast Cancer Syndromes (ATM, Chek2, PALB2, BRCA)

Hereditary Breast and Ovarian Cancer Syndrome (BRCA1/BRCA2)

  • Facing Our Risks Empowered (FORCE)
  • BRCA Positive Decision Guidance Tool
  • BRCA in the Media:
    • Apron Strings: Inheriting Courage, Wisdom, and Breast Cancer, by Diane Tropea Greene
    • In the Family, by Joanna Rudnick
    • Pretty is What Changes, by Jessica Queller
    • The Pink Magnolia Club, by Geralyn Dawson
    • Previvors, by Dina Roth Port
    • What We Have, by Amy Boesky
    • Confronting Hereditary Breast and Ovarian Cancer, by Sue Friedman, Rebecca Sutphen, Kathy Steligo and Mark H. Greene
    • Pink Moon Lovelies: Empowering Stories of Survival, by Nicki Boscia Durlester
    • Previving and Thriving Blog
    • Positive Results: Making the Best Decisions When You're at High Risk for Breast or Ovarian Cancer, by Joi Morris and Dr. Ora Gordon
    • Show & Tell Book. This book can be purchased at the FORCE store under FORCE publications.

Hereditary Diffuse Gastric Cancer (CDH1)

Hereditary Leiomyomatosis Renal Cell Cancer (FH)

Hereditary Papillary Renal Cell Carcinoma (MET)

Hereditary Pheochromocytoma/Paraganglioma (SDHD, SDHAF2, SDHC, SDHB, TMEM127)

Hereditary Retinoblastoma

Li-Fraumeni Syndrome (TP53)

Lynch Syndrome (MLH1, MSH2, MSH6, PMS2, EPCAM)

Multiple Endocrine Neoplasia Type 1 (MEN1)

Multiple Endocrine Neoplasia Type 2 (RET)

MYH Associated Polyposis Syndrome (MUTYH)

Neurofibromatosis Type 1 (NF1)

Peutz-Jeghers Syndrome (STK11)

Tuberous Sclerosis Complex (TSC1, TSC2)

Von Hippel Lindau Syndrome