Peer-support in coping with medical uncertainty: Discussion of oophorectomy and hormone replacement therapy on a web-based message board Regina H. Kenen 1 , Pamela J. Shapiro 2 , Susan Friedman 3 and James C. Coyne 2 * 1 The College of New Jersey, NJ, USA 2 University of Pennsylvania School of Medicine, PA, USA 3 Facing Our Risk of Cancer Empowered, FL, USA * Correspondence to: Department of Psychiatry, University of Pennsylvania School of Medicine, 3535 Market St., Rm 676, Philadelphia, PA 19104 USA. Email: jcoyne@mail.med. upenn.edu Abstract The Facing Our Risk of Cancer Empowered (FORCE) website is devoted to women at risk for hereditary breast and ovarian cancers (HBOC). To understand the unique health concerns and emotional support needs of these women, we examined threads on the FORCE archived message boards with relevance to the broader HBOC community. We report on a thread discussing the controversial decision to use hormone replacement therapy (HRT) following prophylactic oophorectomy (PO). We used a qualitative research inductive process involving close reading, coding and identification of recurrent patterns, relationships and processes in the data. Twenty-nine women posted 177 messages over 7 months. Two main groups of women posted: (1) Women who were BRCA+, had completed PO, and were debating or adjusting their HRT options in terms of optimizing both quality and quantity of life. (2) Women who were BRCA+, were contemplating PO, but wanted to better understand the potential physical and psychological consequences of surgical menopause before deciding. Frustrated by physicians’ lack of knowledge and contradictory media articles about the long-term consequences of HRT in BRCA+ women, they sought resources, emotional support and specific experiential knowledge from each other and generated a unique sense of community and a high level of trust. Copyright # 2007 John Wiley & Sons, Ltd. Keywords: internet; prophylactic surgery; BRCA; hereditary risk of cancer; quality of life Introduction Approximately 5–10% of the estimated 213 000 women who will be diagnosed with breast cancer and the 20 000 who will be diagnosed with ovarian cancer in 2006 [1] will have an identifiable genetic mutation predisposing them to hereditary breast and ovarian cancers (HBOC). For women carrying a BRCA1/2 mutation, the lifetime risk of breast cancer is approximately 50–85% and the risk of ovarian cancer is approximately 15–40% [2,3]. Although there are a number of strategies for managing HBOC risk, including surveillance, chemoprevention, and prophylactic surgeries [1,4], each can have negative consequences for both immediate and long-term health and quality of life. Thus, women seeking to reduce their cancer risk face complex medical decisions. Emerging data describing the risk-reduction benefits of various measures can provide a basis for decision-making [5–9]. Unfortunately, many women in the commu- nity do not have access to specialized genetic services where such information can be individua- lized and discussed in educational and counseling sessions. For these women, the internet can provide a lifeline to support and information. Although there are a number of internet sites for women with breast or ovarian cancer, Facing Our Risk of Cancer Empowered (FORCE) is the only website exclusively serving the needs of women at high-risk for HBOC. FORCE receives approxi- mately 1 000 000 hits per month from all over the world and has been described as the best site in the world for HBOC patients to be directed by their physicians [10]. The website provides links to informational resources, a 24 hour message board, and a chat-group. Since FORCE was started in 1999, more than 50 000 messages have been posted. The archives include posts covering a wide range of HBOC related issues from the initial decisions to undergo genetic testing to discussions of the long- term physical and quality of life consequences of various risk management and preventive strategies. As participation on the FORCE message board likely reflects unmet needs, the limitations of community resources, and the ambiguity Received: 14 March 2006 Revised: 28 November 2006 Accepted: 9 December 2006 Copyright # 2007 John Wiley & Sons, Ltd. Psycho-Oncology Psycho-Oncology 16: 763–771 (2007) Published online 17 January 2007 in Wiley InterScience (www.interscience.wiley.com). DOI: 10.1002/pon.1152