Regular Article
Prophylactic Surgery Decisions and Surveillance Practices One Year Following BRCA1/2 Testing,☆☆

https://doi.org/10.1006/pmed.2000.0684Get rights and content
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Abstract

Background. Although genetic testing for breast cancer risk is clinically available, its impact on health-related behaviors is unknown. This study examined prophylactic surgery and surveillance behavior during the year following BRCA1/2 gene testing.

Methods. Participants were female members (n = 216) of hereditary breast–ovarian cancer families (84 mutation carriers, 83 noncarriers and 49 test decliners). In this prospective observational study, utilization of prophylactic surgery and surveillance behavior were assessed 1-year following BRCA1/2 testing.

Results. Only 3% of the unaffected carriers obtained prophylactic mastectomy during the 1-year follow-up period. Among the remaining females, carriers had significantly higher rates of mammography (68%) than noncarriers (44%); (OR = 7.1; C.I. = 1.36–37.1; P = 0.02). However, the adherence rate in carriers was unchanged from baseline, suggesting that this difference is attributable to a reduction in screening among noncarriers. Women ages 25–39 years were significantly less likely to obtain mammograms than those aged 40 years and older. Cancer-related distress had a positive but nonsignificant (P < 0.07) association with adherence in bivariate but not multivariate analysis. With regard to ovarian risk, only 13% of carriers obtained prophylactic oophorectomy; of the remaining female carriers, only 21% reported a CA125 and 15% reported a transvaginal ultrasound.

Conclusion. The vast majority of BRCA1/2 carriers may not opt for prophylactic surgery, and many do not adhere to surveillance recommendations. Greater attention to risk communication and medical decision-making is warranted.

Keywords

genetic testing
breast cancer
risk
screening.

Cited by (0)

We thank Cecil Fulmore and Juanita Bowman for assistance with data management and telephone interviewing and Susan Marx for her assistance with manuscript preparation. We also thank Dr. Patrice Watson for her efforts with study development and Beth Peshkin for her helpful feedback on the manuscript. We are also very grateful to all of the family members who participated in this study.

☆☆

Supported by the Department of Defense Grants DAMD17-94-J-4340 and DAD17-94-J-4299 and by a grant from the Nebraska State Cigarette Tax Cancer and Smoking-Related Disease Program LB595.

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To whom correspondence and reprint requests should be addressed at Lombardi Cancer Center, Georgetown University Medical Center, 2233 Wisconsin Avenue, NW, Suite 317, Washington, DC 20007. Fax: (202) 687-8444. E-mail: [email protected].