Introduction: This systematic review group is comprised solely of consumers. This group was formed by a group of women who are graduates of Project LEAD, a science course to train breast cancer survivors as activists to influence policies regarding breast cancer, developed by the National Breast Cancer Coalition. This presentation will discuss the process and steps taken, as well as the obstacles encountered by this consumer group in carrying out this systematic review. Many women are considering prophylactic mastectomy because they have a family history of breast cancer, are considered at risk for the disease, and are seeking a way to prevent it. Also, some women who have been diagnosed with breast cancer in one breast and are at risk for developing the disease in the contralateral breast, are considering prophylactic mastectomy as a treatment option.

Objectives: The aim of this systematic review is to complete a comprehensive examination of the scientific information on whether and to what extent prophylactic mastectomy reduces incidence of breast cancer, and what are the affects on quality of life. The protocol for this review is currently under revision.

Methods: For the purpose of this study all types of mastectomy (e.g. subcutaneous, simple and radical) will be included. In addition to the clinical outcomes of survival and occurrence (or recurrence) of breast cancer, this review is interested in the outcomes of quality of life, impact on body image, and psychological well-being.

Results: Preliminary results will be presented at the Cochrane Colloquium in Rome.

Discussion: This review will also present recommendations to the scientific community on ways to involve advocates in their work and offer suggestions for making future research more patient-friendly. The analysis of research from this systematic review on prophylactic mastectomy will be made available in lay language to assist breast cancer patients to make informed treatment decisions.