Guidelines for genetic testing in people diagnosed with endometrial cancer
About 5% of women diagnosed with endometrial cancer have an inherited mutation that caused their cancer. There are national guidelines that outline who should consider genetic counseling and testing for an inherited mutation 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 inherited mutation associated with .
Not all people with cancers will test positive for a mutation.
Additional guidelines for genetic testing in people diagnosed with colorectal cancer
Genetic counseling and testing for an inherited mutation is also recommended for people diagnosed with endometrial cancer who have any of the following:
Other people diagnosed with colorectal 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.
Health care providers who are specially trained in genetics can help you more clearly understand your risk for . The following resources can help you locate a genetics expert in your area.
- The National Society of Genetic Counselor website offers a searchable directory for finding a genetic counselor by state and specialty. To find a genetic counselor who specializes in cancer genetics, choose "cancer" under the options "Area of Practice/Specialization."
- 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.
- 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.
- FORCE's toll-free helpline at: 866-288-RISK, ext. 704 will connect you with a volunteer board-certified genetic counselor who can answer general questions about genetic testing and cancer and help you find a genetics expert near you.
- FORCE Peer Navigator Program will match you with a volunteer who has undergone genetic counseling and can help you navigate resources to find a genetic counselor near you.
- Ask your doctor for a referral to a genetics expert.
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.
- American Sign Language
- People of Color
- SHARE is a nonprofit that provides support and information for women with breast, ovarian or endometrial cancer.