title: Initial experiences of women from hereditary breast cancer families after bilateral prophylactic mastectomy: a retrospective study.
abstract: BACKGROUND
  Women from families with breast and/or ovarian cancers seek advice and counselling for risk assessment, but they also want information about preventive measures that might reduce their risk of developing these neoplasms.
  
  
  METHODS
  This study was undertaken in order to assess 15 women's experience with the decision-making process prior to undergoing prophylactic bilateral mastectomy (PM) and immediate breast reconstruction (IBR). It was also designed to determine the degree of the women's satisfaction with the information delivered by the different caregivers, and whether the women felt that their need for psychosocial support was appropriately met. An additional goal was to learn about the patients>> satisfaction with the operations.
  
  
  RESULTS
  The women found it difficult to translate the genetic information transmitted to them, although they were satisfied by the way it was given. At some stage during the pre-operative and post-operative period nearly all women stated that they lacked psychological support from the different caregivers. No woman regretted her choice to undergo PM and IBR. By far, the most important issue was the actual risk reduction. However, the result exceeded all patients' initial expectations. When performing PM and IBR, a multidisciplinary team approach, including a psychologist, seems mandatory. It will facilitate the overall management of this group of women.
authors.affiliation: Department of Humanities, Informatics and Social Sciences, Karolinska Institute, Stockholm, 171 77, Sweden.
authors.forename: U
authors.initials: U
authors.lastname: Josephson
authors.forename: M
authors.initials: M
authors.lastname: Wickman
authors.forename: K
authors.initials: K
authors.lastname: Sandelin
mesh_terms: D000328:Adult; D001828:Body Image; D001943:Breast Neoplasms / Q000235:genetics / Q000517:prevention & control* / Q000523:psychology / Q000601:surgery*; D003657:Decision Making; D005195:Family Relations; D005260:Female; D005817:Genetic Counseling; D006801:Humans; D016462:Mammaplasty; D008408:Mastectomy; D008875:Middle Aged; D012189:Retrospective Studies; D012959:Socioeconomic Factors