Guidelines for genetic testing in people diagnosed with prostate cancer
Up to 10% of men with prostate cancer have an inherited mutation that caused their cancer. There are national guidelines that outline which men with prostate cancer should have genetic counseling and testing for an inherited mutation. Men with prostate cancer, should speak with a genetics expert about genetic testing if they have any of the following:
- a tumor test result suggests an inherited mutation (for example, a BRCA1, BRCA2 or ATM mutation in the tumor that may indicate an inherited mutation in one of those genes).
- a blood relative who tested positive for an inherited mutation in a gene linked to prostate cancer.
- metastic prostate cancer diagnosed at any age.
- cancer that is considered very-high- or high-risk based on pathology.
- Eastern European (Ashkenazi) Jewish ancestry.
- one or more close relatives diagnosed with breast cancer at age 50 or younger, or ovarian, pancreatic or metastatic prostate cancer or high-grade prostate cancer at any age.
- two or more close relatives diagnosed with breast or prostate cancer at any age.
Men with the following are unlikely to have an inherited mutation:
- diagnosed with localized prostate cancer with a gleason score of <7 and:
- no prior history of breast or pancreatic cancer
- no first-,second-, or third-degree relative who was diagnosed with breast, ovarian, pancreatic or prostate cancer.
Other people who may benefit from genetic counseling and testing
You may benefit from additional genetic counseling and expanded genetic testing if you had genetic testing in the past, you tested negative, and the following applies to you:
- your situation matches any of the above, and
- you had a test that only looked for one or a few genes, or
- you had genetic testing before 2014. Genetic testing has improved, and laboratories can now find gene mutations that may have previously been missed.
Prostate cancer survivors and those in treatment should speak with a genetics expert to see if testing is right for them.
Guidelines for genetic testing for relatives of people who have been diagnosed with prostate cancer
Genetic counseling and testing is also recommended for anyone with a first-degree or second-degree relative who has been diagnosed with metastatic or high-grade prostate cancer.
See our sections Testing Guidelines by Cancer Type and Genetic Testing for People Who Have Never Been Diagnosed with Cancer for additional guideline information.
Healthcare providers who are specially trained in genetics can help people diagnosed with cancer learn if it was caused by an inherited mutation. There are several ways to find a genetics expert:
- 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.
- 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, can connect you with a volunteer board-certified genetic counselor who can answer general questions about genetic testing and hereditary cancer and help you find a genetic counselor 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.
If you have prostate cancer and are considering genetic testing, you can find peer support through the following resources:
- FORCE support:
- Register for the FORCE Message Boards to connect with others who share your situation. Once you register, you can post on the Diagnosed With Cancer board to connect with other people who have been diagnosed.
- FORCE's Peer Navigation Program will match you with a volunteer who shares your mutation and situation and provide you with a free resource guide.
- Contact the FORCE impact leaders in your area to link to local support groups and other resources.
- Attend a virtual support meeting in your area.
- Read the stories from members of our community.
- Other organizations that offer support:
- NCT03503097: GENTleMEN Study: Genetic Testing for Men with Metastatic Prostate Cancer. The goal is to determine if online genetic education and testing with telephone genetic counseling is an acceptable to men with metastatic prostate cancer.