By: Marni Amsellem, Ph.D., Clinical Psychologist and Research Consultant to CSC
Breast Cancer Awareness Month also includes raising awareness of some of the challenges those with breast cancer routinely face. Receiving a diagnosis of breast cancer is a lot for anyone to process, emotionally and medically. On top of this, many women undergoing a mastectomy must make decisions about breast reconstruction. For women and their loved ones facing these decisions, obtaining information about reconstruction procedures and outcomes and knowing what the best choices are for themselves is not easy. Many considerations may influence the decisions women ultimately make.
The Cancer Support Community wanted to better understand the experience of women facing these decisions in order to better meet their needs. With this knowledge, they would develop and deliver a unique psychoeducational program focused on breast reconstruction. This program, Frankly Speaking about Cancer: Breast Reconstruction, has now been running since 2011, with workshops held nationwide at CSC affiliates, a comprehensive booklet and online resources.
This large-scale survey that was designed to understand the needs and experience of women facing breast reconstruction drew 840 women with breast cancer as participants. Some findings from this survey are highlighted below. These findings were used to then create the psychoeducational workshop. Since the program began, every year workshop participants also answer similar questions about their diagnostic and treatment history, their decision regarding reconstruction, their experience searching for and receiving information and their expectations about reconstruction. What is presented below is a brief summary of results from the 840 original survey respondents combined with 345 breast reconstruction workshop participants in the first year of the program:
Most women (57.3%) had either undergone or had decided to undergo breast reconstruction (and were in the process of going through reconstruction). 18.4% decided not to undergo reconstruction. 8.9% were not eligible. Additionally, 15.5% of respondents were currently considering or planning to consider their options for reconstruction at a later time.
In this blog post, we only have room to highlight some of the findings, so we will focus here on findings from women who were currently considering or planning to consider breast reconstruction. Aside from their health care team, these women sought additional information about reconstruction from other women with breast cancer (40.9%), medical literature (46.0%), patient support groups (35.6%), friends and family (41.3%) and the Internet (57.2%). Over one-third of respondents considering reconstruction (34.5%) would have liked to have had more information about the risks and benefits of reconstruction at the time of mastectomy versus at a later time. A number of factors influenced their current point in the decision-making process, including: concerns about implant safety (83.3%); concerns about additional treatment and recovery (85.5%); concerns about failed procedures (91.5%) and confusion about the reconstruction decision-making process (72.2%). From these results, we see that women considering breast reconstruction have a variety of informational needs, some of which are not being met, and that there is still work to be done with regard to establishing realistic expectations about the procedures and outcomes, providing comprehensive information at various stages throughout the process, and across the various choices.
Interested in seeing more results of the survey?
Below, we provide links to other presentations we have made at scientific conferences across the country over the past several years highlighting results from this survey and from the FSAC: Breast Reconstruction Workshop. Many of these findings highlight factors playing a role in decision-making processes.
2011 APOS Decisional Factors Influencing Breast Reconstruction Post-Mastectomy: Results from a National Survey
APHA 2012 EMPOWERING WOMEN WITH BREAST CANCER DURING THE DECISIONMAKING PROCESS ABOUT BREAST RECONSTRUCTION OPTIONS: RESULTS FROM NATIONWIDE PATIENT EDUCATION WORKSHOPS
2012 ASCO Breast PATIENT INFORMATIONAL NEEDS ABOUT BREAST RECONSTRUCTION POST-MASTECTOMY
SBM 2013 Decisional factors influencing breast reconstruction post-mastectomy
For more information on the FSAC Breast Reconstruction Workshop or to order products: