title: Decisions about prophylactic gynecologic surgery: a qualitative study of the experience of female Lynch syndrome mutation carriers.
abstract: BACKGROUND
  Women who carry a mutation for Lynch syndrome face complex decisions regarding strategies for managing their increased cancer risks. At present, there is limited understanding of the factors influencing women's prophylactic surgery decisions.
  
  
  METHODS
  As part of an exploratory pilot project, semi-structured interviews were conducted with 10 women who were Lynch syndrome mutation carriers and had made prophylactic surgery decisions. Nine of 10 women had chosen to undergo prophylactic hysterectomy and/or oophorectomy as a means of managing their increased gynecological cancer risks.
  
  
  RESULTS
  Study findings revealed that surgery decisions were influenced by multiple factors, including demographic variables such as age and parity, as well as psychosocial factors such as cancer worry, in addition to personal and social knowledge of gynecological cancer. While all women were satisfied with their surgery decision, some reported they were not fully informed about the negative impact on their quality of life post-surgery (e.g., complications of surgically-induced menopause), nor about the potential for, or risks and benefits of, hormone replacement therapy.
  
  
  CONCLUSIONS
  Study findings highlight some of the factors associated with prophylactic surgery decisions and women's perceptions about pre-surgical information provision and needs. Suggestions are made for improving the information and support provided to female carriers of a Lynch syndrome mutation.
authors: Division of Medicine, Clinical Epidemiology Unit, Memorial University Health Sciences Centre, Patient Research Centre, Room 1414 300 Prince Phillip Drive, St. John's, A1B 3V6 NL Canada.
authors: Holly
authors: H
authors: Etchegary
authors: Center for Health Informatics & Analytics (CHIA) Health Sciences Centre, Room 1756 300 Prince Philip Drive, St. John's, A1B 3V6 NL Canada.
authors: Elizabeth
authors: E
authors: Dicks
authors: Centre for Nursing Studies, Southcott Hall, 100 Forest Road, St. John's, A1A 1E5 NL Canada.
authors: Kathy
authors: K
authors: Watkins
authors: Department of Oncology, Memorial University, St. John's, A1B 3V6 NL Canada.
authors: Sabrina
authors: S
authors: Alani
authors: Obstetrics and Gynecology Division of Gynecologic Oncology, Memorial University, 300 Prince Phillip Drive, St. John's, A1B 3V6 NL Canada.
authors: Lesa
authors: L
authors: Dawson
keywords: Gynecological; HNPCC; Lynch syndrome; Prophylactic surgery