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Patient experiences with genetic testing
https://www.facingourrisk.org/XRAY/genetic-testing-experiences
Full article: https://jamanetwork.com/journals/jama/article-abstract/2600457
Patients can now find out if they have a mutation in more than 20 different genes that are associated with cancer risk, thanks to research advances and the decreasing cost of genetic testing. However, patients’ experiences and use of genetic counseling and testing with these changes are unknown. Do patients want genetic testing? Are they getting tested? (3/7/17)
Expert Guidelines
The National Comprehensive Cancer Network has guidelines on who should undergo genetic counseling and testing. If you have been diagnosed with breast cancer, you should speak with a genetics expert about genetic testing if any of the following apply to you:
- You have a blood relative who has tested positive for an inherited mutation
- You have any of the following:
- Breast cancer at age 50 or younger
- Male breast cancer at any age
- Ovarian cancer at any age
- Triple-negative breast cancer at any age
- Two separate breast cancer diagnoses
- Eastern European Jewish ancestry and breast cancer at any age
- Metastatic breast cancer
- Testing of your tumor shows a mutation in a gene that is associated with hereditary cancer
- HER2-negative breast cancer and high risk for recurrence
- Lobular breast cancer and a family history of diffuse gastric cancer
OR
- You have one or more close family members who have had:
- Young-onset or rare cancers
- Breast cancer at age 50 or younger
- Triple-negative breast cancer
- Male breast cancer, ovarian cancer, pancreatic cancer, or metastatic prostate cancer at any age
- Two separate cancer diagnoses
- Prostate cancer at age 55 or younger or metastatic prostate cancer
The American Society of Breast Cancer Surgeons (ASBrS) released guidelines in 2019 that recommend all women diagnosed with breast cancer have access to genetic testing for inherited mutations in breast cancer genes.
If you are uncertain whether you meet the guidelines above and you are interested in or considering genetic testing, you should speak with a cancer genetics expert.
Questions To Ask Your Health Care Provider
- Should I have genetic testing?
- How can I tell if cancer runs in my family?
- I had breast cancer before age 50 and I have a strong family history of cancer, but I tested negative for a BRCA mutation. Should I consider expanded panel testing?
- Can you refer me to a genetic counselor?
Open Clinical Trials
Below are clinical trials that include genetic counseling and testing.
Other genetic counseling or testing studies may be found here.
About FORCE
FORCE is a national nonprofit organization, established in 1999. Our mission is to improve the lives of individuals and families affected by adult hereditary cancers.