Joining FORCES is the FORCE newsletter with news, views and supportive information for individuals concerned about hereditary breast and ovarian cancer.
by Patrice Fleming, Susan Vadaparampil, PhD and Tuya Pal, MD
In 2002, we established the objective to study why more young black women than Caucasian women develop breast cancer. As a research team with a focus on hereditary cancer, we sought to understand the role of genetic factors in this difference. Since then, we have successfully launched initiatives to educate black women about hereditary breast cancer and have developed additional research studies to learn more about the genetics of breast cancer in black women. We have made a lot of progress in the last decade, but much more needs to be done!
Why are we interested in specifically studying breast cancer in black women? Although their overall rate of breast cancer is lower than white women, a higher number of black women develop breast cancer at earlier ages and tend to have more aggressive forms of the disease. When we began our research, little was known about why these differences exist, and we wanted to change that. An important component of our research was to gain a better understanding of how many black women who develop breast cancer before age 50 carry a BRCA mutation. However, we faced a major hurdle, since few black women utilize clinical genetic counseling and testing services. If we were going to be successful in gaining knowledge about the genetics of breast cancer in this population, we had to deliver these services to our participants as a part of our studies. We did just that, free of charge. As a result of our early efforts, we, along with other U.S. research teams, better understand that differences in breast cancer between black and white women are, in part, related to genetic risk factors.
Our most recent study examined the genes of 46 black women with breast cancer at age 50 or younger. Three of the women tested positive for a BRCA mutation (one had a BRCA1 mutation and two were found to have BRCA2 mutations). When we asked participants about their experience with genetic counseling and testing, 95% indicated they were pleased with their participation, and many felt empowered with the information they gathered. As researchers, we now have a better idea of the prevalence and penetrance of BRCA gene mutations in the black community, but we still have a long way to go.
Our community education and outreach efforts took flight in 2006 after receiving funding through Komen for the Cure. With this new financial support, we formed a partnership with community members and ultimately, a Community Advisory Panel (CAP) was born. This group consists of patient advocates, breast cancer survivors, and healthcare providers, many of whom are members of the black community. Our academic-community partnership played a key role in expanding our research efforts and educational initiatives. In 2007, we named our educational initiative B-GREAT (Breast Cancer Genetics Research and Education in African Americans Team) to symbolize this partnership.
In 2007, through our work with CAP members, we identified a need to increase awareness about hereditary breast and ovarian cancer in the black community. This need fueled the development of an educational brochure about hereditary breast cancer targeting the black community. Based on input from our CAP, as well as the larger community of black breast cancer survivors, we finalized a lay brochure in 2008 that is currently available for general dissemination. In two years, we have distributed over 4,500 of these brochures and look forward to getting many more out there in the coming years.
Patrice Fleming is a research coordinator for Moffitt Cancer Center. She is the education and outreach coordinator for the B-GREAT Initiative.
Tuya Pal is a board-certified clinical geneticist at Moffitt Cancer Center, with an interest in the genetics of breast cancer in African American women. Tuya co-directs the B-GREAT Initiative.
Susan Vadaparampil is a behavioral scientist with an interest in uptake and outcomes related to genetic counseling and testing for hereditary breast cancer in minority communities. She co-directs the B-GREAT Initiative.