Members of six Los Angeles-area grassroots support groups for women of color with breast cancer have united with City of Hope researchers to push for better cancer education and care among ethnic communities.

Members of grassroots breast cancer support groups discuss their struggles and victories at a luncheon hosted by City of Hope.
(Photo by Alicia Di Rado)

Members of grassroots breast cancer support groups discuss their struggles and victories at a luncheon hosted by City of Hope. (Photo by Alicia Di Rado)

About a dozen breast cancer survivors came together in Duarte, Calif., on Feb. 24 for the “Sisters of Color, Essence and Grace: Celebrate Life Luncheon” organized by City of Hope’s Center of Community Alliance for Research & Education (CCARE). These survivors represent established and growing support groups networks throughout Southern California that serve the primary educational, informational and psychosocial resource for African-American women with breast cancer.

Though the survivors share similar concerns and, at times, even the same medical challenges, the luncheon marked the first time that members of all six groups joined together as one. The groups included Women of Color, Sisters Incorporated, Women of Essence, Support Sisters, Celebrate Life and The Wellness Community. Survivors met in City of Hope’s Population Sciences Building to talk about partnerships and future collaboration.

“I feel very blessed and privileged to be in your presence,” CCARE Director Kimlin Tam Ashing-Giwa, Ph.D., told the women.

Support group leaders shared personal stories, unique observations and, in some cases, a few tears. They discussed the challenges they faced when they were pursuing their own care. Some said they heard contradictory advice from physicians; others felt ignored by theirs. Still others praised oncologists who took the time to listen to them, and they pointed out what made them good physicians.

The women talked about practical matters important to daily life: their fears during and after treatment, rehabilitation and getting back to a “normal” life after treatment, their appearance, healing and pain after surgery and reconstruction, and becoming breast cancer advocates — how to give back. They also discussed broader issues, such as how to help other women find the right physicians and make informed health-care decisions, as well as ways to teach more women about preventive care.

Coalition members hope that by coming together, the women can better spread the word among doctors and nurses that support groups can provide vital peer education and resources for newly diagnosed patients. Ashing-Giwa and colleagues also will work with members of the coalition to apply for grants supporting community-based, culturally relevant health education efforts, as well as perform research to understand the needs of cancer patients and survivors.

Ashing-Giwa has extensive experience in hands-on prevention and education programs specific to the cultural, linguistic and socioecological needs of those within local communities. While at UCLA, she was co-investigator for “Kitchen Divas,” a practical intervention funded by the California Breast Cancer Research Program that addressed diet and breast cancer prevention in the African-American community.

At City of Hope, CCARE was developed to further collaborative cancer education and control programs with diverse communities. The center aims to turn research on health care and survivorship into practical, public interventions. CCARE is part of the Division of Population Sciences.