Abstract P2-12-23: Social networks and the decision to undergo contralateral prophylactic mastectomy
Authors: Baptiste D , Venetis MK , MacGeorge EL , Lagoon J , Mouton A , Pastor R , Friley LB , Clare SE , Bowling MW 
Published: May 2016

Abstract
Background: Multiple studies indicate that the choice of contralateral prophylactic mastectomy (CPM) is increasing, predominantly in women younger than 50. This is despite the lack of demonstrated survival advantage for removing the non-cancerous breast, and contradicts expert medical recommendations, such as those of The National Comprehensive Cancer Network, that discourage CPM unless the patient is at elevated risk for breast cancer (e.g., BRCA1/2 mutation).
An underexplored area with regard to selection of CPM is the influence of patients' social and support networks. Breast cancer patients typically involve one or more intimates in their treatment decisions. Further, breast cancer is rarely stigmatized, making it acceptable to disclose the condition, even to non-intimates. Thus, others, in person or using social media, are likely to know when patients are making treatment choices, and may provide information, opinions, or advice that affects these choices. The scope and strength of social network influence on CPM decision-making remains unexplored to date.
Methods: Potential participants for this study were identified from Indiana University and Wishard Health Services billing records using the procedure code for bilateral mastectomy during the years 2007-2012. The lists were then curated to identify patients who had undergone CPM. These patients were mailed an introductory letter and study information sheet, after which they were contacted by telephone and the questionnaire administered to those who agreed. Questions focused on the people with whom participants discussed the CPM decision.
Results: 117 women of 326 invited agreed to participate. 88% of participants were Caucasian and 11% African-American. The mean age at diagnosis was 50. Most respondents (97%) discussed their surgical options with at least one person other than their surgeons (median = 3, mean = 6.7). The individuals most frequently consulted were spouses/partners, and friends or relatives who had experienced breast cancer. Children, relatives and friends who had not experienced breast cancer, and health care providers or counseling professionals were also engaged in discussion. Most respondents (92%) reported that at least one of the people they talked with (median = 2, mean = 2.6) had some degree of influence on the CPM decision. The average influence of these individuals was 3.2 on a 5-point scale (5 = played a strong role in the decision). Children had the strongest average influence (3.7/5), followed by spouses, and friends or relatives who had experienced breast cancer. Consistent with the sample (all respondents had elected CPM), most people who influenced the respondents were reported to be positive or neutral toward CPM. In the few instances in which the advisor was negative with regard to CPM, respondents reported that this person did not influence their decision.
Conclusion: The current study corroborates prior research indicating that breast cancer patients discuss their treatment options with others, and underscores the potential for social and support networks to influence CPM decisions. To reduce the incidence of CPM, it may be necessary for health care professionals to educate and inform large segments of the lay public about the actual benefits and risks of CPM.
Citation Format: Baptiste D, Venetis MK, MacGeorge EL, Lagoon J, Mouton A, Pastor R, Friley LB, Clare SE, Bowling MW. Social networks and the decision to undergo contralateral prophylactic mastectomy. [abstract]. In: Proceedings of the Thirty-Eighth Annual CTRC-AACR San Antonio Breast Cancer Symposium: 2015 Dec 8-12; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2016;76(4 Suppl):Abstract nr P2-12-23.