Resources for Patients and Families

Hereditary Syndromes, Genetics, and Cancer:

• UCSF Center for BRCA Workshops - The UCSF Center for BRCA Research and UCSF Hereditary Cancer Clinic are offering a series of educational workshops to provide more information for mutation carriers and family members. 
• FORCE: Facing Our Risk of Cancer Empowered - FORCE community includes people with a BRCA, ATM, PALB2, CHEK2, PTEN or other inherited gene mutation and those diagnosed with Lynch syndrome. We accomplish this through our education, support, advocacy and research efforts.
• American Cancer Society 
• National Cancer Institute/Cancer Information Service  
• UCSF Psycho-Oncology - Connect with psychologists and psychiatrists who care deeply about the emotional needs of patients and their families as they cope with cancer and treatment.
• UCSF Art for Recovery - Individuals coping with life-threatening illness are given an opportunity to express their feelings and experiences through art and writing workshops, visits at the bedside, and individual attention. Artistic ability is not necessary to participate.
• UCSF Support Groups - Sponsored or facilitated by the UCSF Patient & Family Cancer Support Center, these support groups foster a sense of community among people affected by cancer.
• Virtual Support Group for Individuals with Inherited Mutations - The Answer Cancer (AnCan) Foundation has designed a support group for individuals who understand the unique challenges of living with—or caring for someone with—an inherited cancer risk. The Group is 100% peer-led for Survivors, Previvors, and Family Members and open to all inherited mutations.

BRCA1 and BRCA2, Breast Cancer, Ovarian Cancer:

• Bright Pink
• Basser - Penn Medicine’s Basser Center for BRCA 
• American Cancer Society: Breast Reconstruction Surgery
• Pink Ribbon Program at the Peninsula JCC - The Peninsula JCC offers the Pink Ribbon Program, a postoperative workout designed to enhance recovery for breast cancer patients. It’s the only program of its kind on the Peninsula!
• In the Family (2008) - The first-person story of director Joanna Rudnick as she tries to decide on a course of action after testing positive for the BRCA1 pathogenic variant
• PINK AND BLUE: Colors of Hereditary Cancer (2015) - PINK AND BLUE takes a profound look into the BRCA world examining what it is and how this pathogenic variant puts both women and men at a higher risk of developing numerous cancers.
• Considering BRCA Genes: Knowledge Improves Outcomes: Watch this video to hear from UCSF BRCA experts Alan Ashworth, PhD, FRS, Pamela Munster, MD and Mindy Goldman, MD.
• Why genetic testing is important for ovarian cancer: "We know that about 20%, and the numbers may be even higher, that our patients with ovarian cancer have a hereditary predisposition,” says Dr. Jocelyn Chapman, a gynecologic oncologist at UCSF Medical Center. Watch this video to learn more.

Li Fraumeni Syndrome:

• Li Fraumeni Syndrome Association
• Living LFS
• The George Pantziarka TP53 Trust

Lynch Syndrome:

• Lynch Syndrome International

Pancreatic Cancer:

• National Pancreas Foundation
• Pancreatica: Confronting Pancreatic Cancer
• European Registry of Hereditary Pancreatitis and Familial Pancreatic Cancer

Prostate Cancer:

• Family communication around prostate cancer: Watch this recording of a panel discussion hosted by AnCan.org and UsTOO to hear from parents and their children about how they communicated around prostate cancer in the family, facilitated by Dr. Alicia Morgans of Northwestern.

Stomach Cancer:

• No Stomach for Cancer

Clinical Trials:

• FORCE - Research Clinical Trials
• Population Health and Cancer Testing (PHACT) Study Cohort 1: Mallika Dhawan, MD discusses the feasibility of cancer risk screening in large multiethnic populations. With costs coming down, it’s becoming more feasible.
• Understanding Clinical Trials: Hear from Mallika Dhawan, MD, UCSF Medical Director for Cancer Risk and Hereditary Cancers.
• Understanding Translational Genetics: Hear from David Quigley, PhD about how scientific discoveries in the lab are advancing precision care for our patients.

• A Cancer in the Family: Take Control of Your Genetic Inheritance [Amazon | WorldCat]
• The Gene: An Intimate Story [Amazon | WorldCat]
• One in a Billion: The Story of Nic Volker and the Dawn of Genomic Medicine [Amazon | WorldCat]
• The Age of Genomes: A Tale of the Front Lines in Genetic Medicine [Amazon | WorldCat]
• Your Genes, Your Health: A Critical Family Guide That Could Save Your Life [Amazon | WorldCat]
• The Philadelphia Chromosome: A Mutant Gene and the Quest to Cure Cancer at a Genetic Level [Amazon | WorldCat]
• Positive Results: Making the Best Decisions When You're at High Risk for Breast or Ovarian Cancer [Amazon | WorldCat]
• Confronting Hereditary Breast and Ovarian Cancer: Identify Your Risk, Understand Your Options, Change Your Destiny [Amazon | WorldCat]

BRCA Specific:

• Twisting Fate: My Journey with BRCA―from Breast Cancer Doctor to Patient and Back [Amazon]
• Resurrection Lily: The BRCA Gene, Hereditary Cancer & Lifesaving Whispers from the Grandmother I never Knew [Amazon | WorldCat]
• Understanding BRCA: Living with the breast cancer gene [Amazon]
• Previvors: Facing the Breast Cancer Gene and Making Life Changing Decisions [Amazon]
• Beyond the Pink Moon: A Memoir of Legacy, Loss and Survival [Amazon | WorldCat]
• The Pink Moon Lovelies: Empowering Stories of Survival [Amazon | WorldCat]
• Trying to be Positive [Amazon]
• Letters to Doctors: Patients Educating Medical Professionals through Practice True-Life Experiences [Amazon | WorldCat]
• Waiting for Cancer To Come: Women’s Experiences with Genetic Testing and Medical Decisions Making for Breast and Ovarian Cancer [Amazon | WorldCat]
• Pretty Is What Changes: Impossible Choices, The Breast Cancer Gene and How I Defied My Destiny [Amazon | WorldCat]
• Annie Parker Decoded: The Story that Inspired the Film [Amazon | WorldCat]
• Hopefully Ever After: Breast Cancer, Life and Me [Amazon]
• Pandora’s DNA: Tracing the Breast Cancer Genes Through History, Science and One Family Tree [Amazon | WorldCat]
• Risky Genes: Genetics, Breast Cancer and Jewish Identity [Amazon | WorldCat]
• It Ain’t Over…Till It’s Over: Reinventing Your Life and Realizing Your Dreams-Anytime, at Any Age [Amazon | WorldCat]
• I am Still Standing: My Fight Against Hereditary Breast Cancer [Amazon | WorldCat]
• A Part of Me [Amazon]

Hereditary Cancer Syndromes:

• A Kick-Ass Fairy (Li Fraumeni Syndrome) [Amazon | WorldCat]
• p53: The Gene that Cracked the Cancer Code [Amazon | WorldCat]
• Am I My Genes?: Confronting Fate and Family Secretes in Age of Genetic Testing [Amazon | WorldCat]
• Lynch Syndrome: Tests, Causes and Treatments [Amazon]
   

Children Who Have Family Members with Cancer:

• This Much I Know [Amazon]
• Cancer Starts With C [Amazon | WorldCat]
• Talking with Children About a Loved One’s Cancer (by the University of Michigan) [PDF]

Male Specific:

• Male Breast Cancer: Taking Control [Amazon | WorldCat]
• Sir, You have Breast Cancer!: My Life and the Story of a Man with a Woman’s Disease [Amazon | WorldCat]
• Prostate Cancer Breakthroughs 2014: New Tests, New Treatments, Better Options: A Step-by-Step Guide to Cutting-Edge Diagnostic Tests and 12 Medically-Proven Treatments [Amazon | WorldCat]

Breast Cancer Books in Spanish:

• El libro de la Mama de la Dra. Susan Love [Amazon | WorldCat]