What is Lynch Syndrome?
Lynch syndrome is a hereditary condition that increases an individual’s risk of several cancers. These cancers can be passed from parent to child and across generations, these include colorectal, endometrial, ovarian and gastric cancers.
About 1 in 279 people have Lynch syndrome. Per that estimate, there are approximately 28,000 people with undiagnosed Lynch syndrome in Washington.
Not everyone with Lynch syndrome will develop cancer, but about 3% of all colorectal and endometrial diagnoses are linked to it. Regular cancer screenings or preventive surgery may reduce the risk of some cancers.
Testing is Important
A full diagnosis, including genetic testing, helps individuals understand their cancer risk and take the appropriate preventive steps. It also helps identify other relatives who may also be at an increased risk. This process is called cascade screening, where relatives can be tested and take action to prevent future Lynch syndrome-related cancers.
- Find a genetic clinic near you.
- Learn about insurance coverage for genetic testing and counseling testing.
Information and Resources
For Providers
- Cancer Genetic Clinic Locations
- Cascade Screening: A Critical Step in Diagnosing Lynch Syndrome (PDF)
A guide for diagnosing asymptomatic family members. - Colorectal Cancer Risk Calculator
- Lynch Syndrome Prediction Model (PREMM5)
A clinical prediction algorithm that estimates the cumulative probability of an individual carrying a germline mutation of Lynch Syndrome-related genes: MLH1, MSH2, MSH6, PMS2, or EPCAM genes. - Cancer Family History Questionnaires
Forms to assist patients with family history information and assess risk for colorectal cancer - Pre-Procedural Colorectal Cancer Risk Assessment Tool (PDF)
A ‘yes’ response to any of the questions indicates an increased risk for Lynch syndrome (LS) and requires further evaluation. - Cancer Genetic Clinic Locations and Hereditary Cancer Case Burden by County in Washington State (PDF)
Data from the Washington State Cancer Registry to help identify possible gaps in access to services.
Clinical Guidelines and Management
- Hereditary Cancer Management Guidelines
The Jackson Laboratory offers professional organizations and societies guidance on managing individuals at increased and high risk for cancer. - National Comprehensive Cancer Network Guidelines (PDF) - Free account needed to access PDF
- Lynch Syndrome Genereviews
Individuals and Their Families
- Genetic clinic locations
- Cancer screening information
- Cancer Can Run in the Family: Lynch Syndrome (PDF)
- Cascade Screening information and resources
- Collecting Your Family History
- Genetic Testing & Cancer Prevention for Lynch Syndrome (PDF) | Spanish (PDF)
- Facing Hereditary Cancer Empowered
Provides information and resources for individuals who have hereditary cancer syndromes. - Fight Colorectal Cancer
Offer information, research opportunities, and advocate for policies change. - Lynch Syndrome International
Support for individuals with Lynch syndrome, public awareness, education information for the public and health care professionals, and supporting Lynch syndrome research. - Lynch Syndrome International (LSI)
Support for individuals with lynch syndrome, public awareness, education information for the general public and health care professionals and supporting Lynch syndrome research. - Lynch Syndrome (PDF) | Spanish (PDF)
- Talking to Family About Lynch Syndrome (PDF) | Spanish (PDF)
Questions?
Please contact the Screening and Genetics Unit for questions about Lynch syndrome or for more information.