Lynch syndrome is one of the most common inherited cancer syndromes, with an incidence of 1 in 279 in the United States. Significant progress has been made in identifying families who are at risk, yet it is estimated that 90% of individuals are still unaware that they have the condition. As colon and endometrial cancers are the most common cancers seen in Lynch syndrome, universal tumor screening, and genetic testing criteria have focused primarily on these two cancers.
Recently, the NCCN Guidelines made a significant change to the testing criteria for Lynch syndrome. Evaluation of Lynch syndrome is now recommended for individuals diagnosed with ANY Lynch-related cancer before the age of 50. These cancers include:
Colon cancer
Uterine cancer
Gastric cancer
Pancreatic cancer
Urothelial cancer
Brain cancer (often glioblastoma in Lynch)
Biliary tract cancer
Small intestinal cancer
Sebaceous adenomas, sebaceous carcinomas and keratoacanthomas
This change in NCCN Guidelines marks a huge and exciting shift to increase awareness of all Lynch syndrome-related cancers. We look forward to broadening our collaborations with other specialties, such as dermatology, neurology, and urology, who will play a key role in increasing the identification of Lynch syndrome families!
Click here to watch Heather Hampel, MS, CGC, discuss the importance of the new NCCN guideline!
You can learn more about Lynch syndrome by visiting the following sites:
Fight Colorectal Cancer shares the connection between Lynch Syndrome, Genetics, and Screenings: https://fightcolorectalcancer.org/blog/lynch-syndrome-genetics-and-screenings/
AliveAndKickn is a Lynch Syndrome Advocacy Organization https://www.aliveandkickn.org/
The GI Cancers Alliance is a collaboration between advocacy groups, industry, and institutional partners that aims to raise awareness and provide education about gastrointestinal cancers. https://www.gicancersalliance.org/
Centers for Disease Control and Prevention https://www.cdc.gov/genomics/disease/colorectal_cancer/lynch.htm
FORCE (Facing Hereditary Cancer Empowered): https://www.facingourrisk.org/
InSiGHT (International Society for Gastrointestinal Hereditary Tumours): https://www.insight-group.org/
To find an inherited GI Cancer Genetics Clinic near you, check out the “Find a Clinic” page on the CGA-IGC website: https://www.cgaigc.com/find-a-clinic
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If you enjoyed this blog post, you might also be interested in the following resources.
1. On-demand webinars FREE for CGA-IGC members. Not a member? Sign up here!
From 2022 with Swati G. Patel, MD, MS, discussing State of the Art in Colorectal Cancer Prevention for Lynch Syndrome Patients.
From 2023 with Peter P. Stanich, MD, and Heather Hampel, MS, CGC, discussing Historical and current approaches to identifying individuals with Lynch syndrome.
2. Podcasts OPEN ACCESS
From 2022, with Sir John Burns and Swati G. Patel, MD, MS, speaking about Cancer Prevention with Resistant Starch in Lynch Syndrome Patients in the CAPP2-
From 2023, with Alison Burton-Chase, Ph.D, and Sarah McGee, MS, discussing