Guidelines for genetic testing in people diagnosed with endometrial cancer
About 5% of women diagnosed with endometrial cancer have an that caused their cancer. There are national guidelines that outline who should consider genetic counseling and testing for an linked to cancer.
Guidelines for endometrial cancer tumor testing followed by genetic testing
Experts recommend that all endometrial cancer tumors have testing to look for an abnormality known as "" () at the time of diagnosis. This abnormality is commonly found in the cancers of people with an inherited gene mutation linked to .
People with cancers are recommended to have genetic counseling and testing for an associated with .
Not all people with cancers will test positive for a mutation.
Additional guidelines for genetic testing in people diagnosed with endometrial cancer
Genetic counseling and testing for an is also recommended for people diagnosed with endometrial cancer who have any of the following:
Other people diagnosed with endometrial cancer who may benefit from genetic counseling and testing
People with endometrial cancer may benefit from additional genetic counseling and expanded genetic testing if they had genetic testing in the past, tested negative, and:
Endometrial cancer survivors and those in treatment should speak with a genetics expert to see if testing is right for them.
Genetic testing for relatives of people who have been diagnosed with endometrial cancer
Genetic counseling and testing is also recommended for anyone with a first-degree or second-degree relative who has been diagnosed with endometrial cancer before age 50.
See our sections Testing Guidelines by Cancer Type and Genetic Testing for People Who Have Never Been Diagnosed with Cancer for additional guideline information.
The following resources can help you locate a genetics expert near you or via telehealth.
Finding genetics experts
- The National Society of Genetic Counselor website has a search tool for finding a genetic counselor by specialty and location or via telehealth.
- InformedDNA is a network of board-certified genetic counselors providing this service by telephone. They can also help you find a qualified expert in your area for face-to-face genetic counseling if that is your preference.
- Gene-Screen is a third party genetic counseling group that can help educate, support and order testing for patients and their families.
- JScreen is a national program based out of Emory University that provides low-cost at-home genetic counseling and testing with financial assistance available.
- Grey Genetics provides access to genetic counselors who offer genetic counseling by telephone.
- The Genetic Support Foundation offers genetic counseling with board-certified genetic counselors.
- The American College of Medical Genetics website has a tool to find genetics clinics by location and specialty.
Other ways to find experts
- Register for the FORCE Message Boards and post on the Find a Specialist board to connect with other people who share your situation.
- The National Cancer Institute (NCI)-designated comprehensive cancer centers have genetic counselors who specialize in cancer.
- FORCE's toll-free helpline at: 866-288-RISK, ext. 704 will connect you with a volunteer board-certified genetic counselor who can help you find a genetics expert near you.
The following organizations offer peer support services for people with or at high risk for endometrial cancer:
- FORCE peer support
- Our Message Boards allow people to connect with others who share their situation. Once you register, you can post on the Diagnosed With Cancer board to connect with other people who have been diagnosed.
- Peer Navigation Program will match you with a volunteer who shares your mutation and situation.
- Private Facebook Group.
- Virtual and in-person support meetings.
- Join a Zoom community group meeting.
- SHARE is a nonprofit that provides support and information for women with breast, ovarian or endometrial cancer.
ECANA is an online resource for Black people with endometrial cancer.