title: Prophylactic surgery decisions and surveillance practices one year following BRCA1/2 testing.
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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Lombardi Cancer Center, Georgetown University Medical Center, Washington, DC, 20007, USA. Lermanc@gunet.georgetown.edu
authors.forename: C
authors.initials: C
authors.lastname: Lerman
authors.forename: C
authors.initials: C
authors.lastname: Hughes
authors.forename: R T
authors.initials: RT
authors.lastname: Croyle
authors.forename: D
authors.initials: D
authors.lastname: Main
authors.forename: C
authors.initials: C
authors.lastname: Durham
authors.forename: C
authors.initials: C
authors.lastname: Snyder
authors.forename: A
authors.initials: A
authors.lastname: Bonney
authors.forename: J F
authors.initials: JF
authors.lastname: Lynch
authors.forename: S A
authors.initials: SA
authors.lastname: Narod
authors.forename: H T
authors.initials: HT
authors.lastname: Lynch
mesh_terms: D000328:Adult; D001294:Attitude to Health; D001943:Breast Neoplasms / Q000235:genetics* / Q000517:prevention & control / Q000601:surgery*; D016001:Confidence Intervals; D005260:Female; D005500:Follow-Up Studies; D019398:Genes, BRCA1 / Q000235:genetics*; D005820:Genetic Testing / Q000379:methods / Q000523:psychology; D006579:Heterozygote; D006801:Humans; D016015:Logistic Models; D008408:Mastectomy / Q000706:statistics & numerical data*; D008875:Middle Aged; D016017:Odds Ratio; D010051:Ovarian Neoplasms / Q000235:genetics* / Q000517:prevention & control / Q000601:surgery*; D010052:Ovariectomy / Q000706:statistics & numerical data*; D011159:Population Surveillance; D011322:Primary Prevention; D011336:Probability; D011446:Prospective Studies