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Hereditary Cancer and Genetic Testing

Genetic testing for people who have been diagnosed with breast cancer

Up to 10% of people diagnosed with breast 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.

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:

  • .
  • breast cancer diagnosed at age 45 or younger.
  • male breast cancer.
  • advanced or breast cancer.
  • early breast cancer at high risk for recurrence to determine eligibility for with the Lynparza.
  • a close blood relative (first-, second- or third-degree) who tested positive for an inherited mutation in a gene linked to cancer risk.
  • a close blood relative who tested positive for 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 46-50, who has any of the following: 

  • unknown or limited family medical history. 
  • two or more separate breast cancer diagnoses.
  • one or more close relatives with breast, ovarian, pancreatic or cancer at any age. 


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 intraductal/cribriform type or high-/very high-risk group. 
  • a personal history of three separate breast cancer diagnoses or a total of three separate breast cancer diagnoses in close relatives.
  • two or more close relatives with either breast or cancer. 

 

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.  

finding-experts finding-experts

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. 

updated: 03/16/2022

find-support find-support

The following organizations offer peer support services for people with, or at high risk for breast cancer:

updated: 02/25/2022

paying-for-service paying-for-service

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

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 .   

updated: 02/15/2022

Last updated January 31, 2022