What I wish I had known: Young breast cancer survivors reflect on their experiences after breast cancer surgery.

180 Background: Breast cancer (BC) surgery can have a profound impact on aspects of quality of life (QOL) particularly for young breast cancer survivors, given their life stage. Using a series of focus groups (FG), we explored post-surgical experiences of young survivors who had elected lumpectomy, unilateral or bilateral mastectomy. Methods: Women who had surgery for their stage 0-3 BC and who were 1-3 years from their diagnosis (dx) at age ≤ 40 were recruited to participate. We conducted 4 FG: 2 with women who had bilateral mastectomy, 2 with women who kept their contralateral breast. FG were recorded and transcribed with identifiers removed. FG transcripts were coded using NVivo, and emergent themes were identified by thematic content analysis. At the end of the FG, participants completed a demographic/medical history survey. Results: Of 20 participants (4-6 per FG), median age at dx was 37 yrs; 10% (2/20) identified as Hispanic; most (19/20) were married/partnered; 70% had Stage 1 (4/20) or 2 (10/20) disease. Almost all women who had mastectomies also had reconstruction. Emergent themes included: the unexpectedness of certain physical experiences post-surgery (e.g., surgical drains, pain, numbness), psychological impact of surgery (e.g., vulnerability, self image changes), and short and long-term adjustment to a “new normal”, irrespective of which surgery they had. While participants generally felt their doctors communicated key information about surgery and recovery, some expressed dissatisfaction with how this information was communicated, including feeling pressured to choose a particular surgical option. Conclusions: Young BC survivors have many physical and emotional concerns after BC surgery for which they may not feel prepared. Communicating balanced and relevant information prior to surgery about what to expect afterwards is essential and can potentially help survivors with their transition to a “new normal,” as they move from active treatment to survivorship. Informational resources and decision aids may enhance patient-doctor communication in this setting and help young survivors manage expectations surrounding short and longer-term physical and emotional effects after surgery.