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Gaps in genetic testing and decision-making for women with early-stage breast cancer
https://www.facingourrisk.org/XRAY/genetic-testing-and-early-breast-cancer
Full article: http://ascopubs.org/doi/10.1200/JCO.2016.71.6480
Genetic testing for cancer risk is now more affordable and easier to obtain. As a result, many breast cancer patients are tested without ever seeing a genetic counselor. Genetic testing results affect treatment decision making, but they can be confusing, especially if patients do not receive genetic counseling. This study looks at breast cancer patients’ experiences following genetic testing and how testing results affect surgical decision making. (7/14/17)
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
- How will genetic testing affect my medical options?
- Do I meet the national guidelines for genetic counseling and testing?
- I would like to have genetic testing, can you refer me to a genetic counselor?
- I would like a copy of my genetic test results for my records, can you provide this to me?
- What do my genetic test results mean?
- Should I have a bilateral mastectomy or a lumpectomy?
- Which relatives should I share my genetic test results with?
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.