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)
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.
- NCT02665195: Prospective Registry Of MultiPlex Testing (PROMPT). PROMPT is an online research registry. The goal of PROMPT is to help researchers to better understand the risks that are linked to mutations in less well-studied genes.
- NCT02620852: WISDOM Study: Women Informed to Screen Depending on Measures of Risk offers women age 40-74 the opportunity to undergo risk assessment and genetic testing in order to determine the best breast screening options based on their situation.
- NCT04476654: Improving Uptake of Genetic Cancer Risk Assessment in African American Women-Video. This study looks at the usefulness of intervention with a culturally-tailored video to improve uptake of genetic counseling in Black women who are at increased risk of HBOC.
- NCT05694559: Connecting Black Families in Houston, Texas to Hereditary Cancer Genetic Counseling, Genetic Testing, and Cascade Testing by Using a Simple Genetic Risk Screening Tool and Telegenetics. This study will provide genetic testing to 150 Black individuals and families and provide genetic counseling and risk reduction resources to individuals with a mutation linked to increased cancer risk.
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.