Guidelines for Testing
Review expert guidelines regarding who should consider genetic testing, how to find a genetics expert and how to move forward with testing.Stay up to date on research and information
Sign Up for FORCE NewslettersGenetic Testing for People Who Have Been Diagnosed with Breast Cancer
Up to 10% of people diagnosed with breast 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.
Experts recommend that people diagnosed with breast cancer who have any of the following should speak to an expert about genetic testing.
A person diagnosed with breast cancer, who has any of the following:
- .
- diagnosed with breast cancer more than once.
- breast cancer diagnosed at age 50 or younger.
- male breast cancer or assigned male at birth.
- advanced or breast cancer.
- early breast cancer and at high risk for recurrence to learn if there would be benefit to treatment with a .
- a close blood relative (first-, second- or third-degree) who tested positive for an in a gene linked to cancer risk.
- a close blood relative diagnosed with male breast cancer.
- ancestry.
- lobular carcinoma and a personal or family history of diffuse gastric cancer.
OR
A person diagnosed with breast cancer at age 51 or older, who has any of the following:
- a close relative with breast cancer at age 50 or younger.
- a close relative with male breast, ovarian or pancreatic cancer.
- a close relative with cancer that is or high-risk or very high-risk group.
- three or more close relatives on the same side of the family with either breast or cancer (including the patient).
Also see our section Genetic Testing for People Who Have Never Been Diagnosed with Cancer for additional guideline information. This is not a complete list of hereditary cancers. A genetics expert can help you learn if the cancer in your family is hereditary.
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 breast 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.
- Our Peer Navigation Program will match you with a volunteer who shares your mutation and situation.
- Connect online with our Private Facebook Group.
- Join our virtual and in-person support meetings.
- Other organizations that offer breast cancer support:
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 .