General Info & Resources
Inherited Risk for Cancer and Genetic Testing
Cancers caused by an inherited mutation (also known as a “pathogenic variant”) are called hereditary cancers. The remaining cancers – those not caused by an inherited mutation – are called sporadic cancers. Most cancers are sporadic, but overall, about 10-20% of cancers are believed to be caused by an inherited mutation.
Genetic testing for an inherited mutation (also called “germline genetic testing”) looks at DNA found in blood or saliva samples to find mutations that can cause diseases such as cancer.
Genetic testing can help people understand their risk of cancer, better inform medical management decisions and allow them to take steps to lower their cancer risk or detect cancer early. For people already diagnosed with cancer, genetic testing may help inform treatment decisions.
Advocacy Groups and Resources for Additional Information
AliveAndKick’n – https://www.aliveandkickn.org
- Resource with the mission to improve the lives of people and families affected by Lynch syndrome, a hereditary syndrome that predisposes individuals to colorectal, gynecologic, and other cancers.
Facing Our Risk of Cancer Empowered (FORCE), Inc. – https://www.facingourrisk.org
- Organization aimed to improve the lives of individuals and their families facing hereditary cancer, including those with inherited variants in BRCA1/2, ATM, CHEK2, PALB2, Lynch syndrome, and other cancer predisposition genes.
Imerman Angels – https://imermanangels.org
- Organization dedicated to matching cancer patients, cancer survivors, cancer previvors (those at high risk of developing cancer due to an inherited predisposition), and caregivers to another person going through a similar circumstance.
LivingWithLynch – https://www.livingwithlynch.org
- Collaboration between AliveAndKick’n and Colon Cancer Coalition which provides the perspective of individuals living with Lynch syndrome, a hereditary syndrome that predisposes to colorectal, gynecologic, and other cancers.
PDQ Resources
- The Genetics of Cancer: https://www.cancer.gov/about-cancer/causes-prevention/genetics
- Genetic Testing for Inherited Cancer Susceptibility Syndromes: https://www.cancer.gov/about-cancer/causes-prevention/genetics/genetic-testing-fact-sheet
- Cancer Genetics Overview (Health Professionals Version) https://www.cancer.gov/about-cancer/causes-prevention/genetics/overview-pdq#_123
National Comprehensive Cancer Network (NCCN) – www.nccn.org
National Comprehensive Cancer Network (NCCN) Patient Resources – https://www.nccn.org/patientresources/patient-resources
- NCCN is a not-for-profit alliance of 31 leading cancer centers devoted to patient care, research, and education. In addition to addressing cancer surveillance and treatment for various cancer types, NCCN publishes guidelines on the identification and management of individuals with inherited cancer predisposition syndromes.