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Sign Up for FORCE NewslettersGuidelines 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
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Experts recommend tumor testing endometrial cancers at the time of diagnosis to look for biomarkers known as "" () or microsatellite instability-High (). These two related abnormalities are commonly found in the cancers of people with .
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Additional guidelines for genetic testing in people diagnosed with endometrial cancer
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Genetic counseling and testing for an is also recommended for people diagnosed with endometrial cancer who have any of the following:
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Other people diagnosed with endometrial cancer who may benefit from genetic counseling and testing
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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:
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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 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.
Find Experts
The following resources can help you locate a genetics expert near you or via telehealth.
Finding genetics experts
- The National Society of Genetic Counselors 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 from 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.
Related experts
Genetics clinics
- 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 (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.
Get Support
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.
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ECANA is an online resource for Black people with endometrial cancer.
Paying For Care
Insurance coverage for genetic counseling and testing
Most health plans cover genetic counseling and testing for inherited gene mutations linked to cancer in people who meet the national guidelines. The cost of testing and your out-of-pocket charges may vary based on several factors.
People who are denied coverage for genetic testing can file an appeal (FORCE has sample appeal letters). Your healthcare provider can work with your insurance company and help you file an appeal if needed. Low cost testing may be available for $250 or less. Learn more about coverage for genetic counseling and testing here.
If you need information about finding an insurance plan, watch our video: Choosing Wisely: How to Pick Insurance Plans.
testing under the Affordable Care Act
Under the Affordable Care Act (ACA), insurance companies must pay for both genetic counseling and testing with no out-of-pocket costs for women who meet certain criteria. The ACA regulations are limited to testing for and only and do not cover genetic counseling or testing in all situations. You can learn more about testing under the ACA here.
Medicare and Medicaid coverage of genetic testing
Genetic counseling and testing is typically covered by Medicare for people already diagnosed with cancer who are in treatment or for whom test results may affect their care. Most state Medicaid programs cover genetic testing for and mutations for people who meet requirements, which vary by state. You can read more about Medicare and Medicaid coverage of genetic testing here.
Financial assistance or low cost genetic testing
JScreen is a national program based out of Emory University that provides low-cost at-home genetic counseling and testing with financial assistance available. Many laboratories offer low-cost genetic testing or financial assistance programs. Programs vary, so if you are not eligible for assistance through one lab, consider contacting other labs to see if you qualify .