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- Genetic testing for breast cancer: Psychological and social impact
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- Breast cancer prevention: Lifestyle factors that can reduce risk
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continued:
Genetic testing for breast cancer: Psychological and social impact
Variant or unknown test results
In some instances, testing identifies a gene alteration that hasn't been seen in prior families, and there isn't enough information about the alteration to know whether it causes an increased risk of breast or ovarian cancer. This is known as a variant of uncertain significance.
Learning that you have a genetic variant of unknown significance may lead to:
- Confusion and anxiety about your cancer risk
- Frustration over the lack of useful cancer risk information
- Difficulty making cancer screening, treatment and prevention decisions
Sadness, anxiety normal
Anyone would be anxious if they had the chance to find out whether their risk of a deadly disease is higher than average. In fact, you may decide that you'd rather not know, and just forgo testing altogether. That's certainly a valid choice.
Also normal is to experience sadness, anxiety or even anger if your test results are positive. You might be more likely to experience a more profoundly negative reaction if you didn't expect your results to be positive — for instance if your family history isn't that significant. However, research to date shows that, in the long run, most people cope well with the knowledge of an increased cancer risk and don't experience significant distress over the test results. For many, simply knowing their risk status eases psychological and emotional distress. They can be proactive and establish a plan to deal with their increased risk.
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- Berliner JL, et al. Risk assessment and genetic counseling for hereditary breast and ovarian cancer: Recommendations of the National Society of Genetic Counselors. Journal of Genetic Counseling. 2007;16:241.
- Peshkin BN, et al. Patient information: Genetic testing for breast and ovarian cancer. http://www.uptodate.com/patients/content/topic.do?topicKey=~BBUZ9AXkDRgDZ. Accessed Oct. 29, 2008.
- H.R.493: Genetic information nondiscrimination act of 2008. The Library of Congress. http://thomas.loc.gov/cgi-bin/bdquery/z?d110:HR00493:@@@L&summ2=m&. Accessed Oct. 31, 2008.
- Probability of breast cancer in American women. National Cancer Institute. http://www.cancer.gov/cancertopics/factsheet/Detection/probability-breast-cancer. Accessed Oct. 29, 2008.
- Geirdal AO, et al. Psychological distress in women at risk of hereditary breast/ovarian or HNPCC cancers in the absence of demonstrated mutations. Familial Cancer. 2005;4:121.
- Pasacreta JV. Psychosocial issues associated with genetic testing for breast and ovarian cancer risk: An integrative review. Cancer Investigation. 2003;21:588.
