Strategies for preventing cancer in people with a genetic predisposition.
Edith Joyner, 61, won’t personally benefit from participating in the Sister Study, but it was important for her to join, she says, not only to honor her two sisters who battled the disease, but to help the next generation of females in her family avoid the same fate.
Joyner also wanted to spread the word to other African-American women about the importance of enrolling in cancer prevention trials, especially for a disease that claims the lives of about 6,000 African-American women each year. When Joyner heard that the number of African-American women in the Sister Study was so low—just 4,150 of the more than 46,000 women enrolled so far—she decided to take action.
“First of all, I wanted to make African-American women aware of the study, and then I wanted to make them feel comfortable and secure enough to participate in the study. My job is to give them that personal touch,” says Joyner, of Nashville.
Despite a diagnosis in 2003 of sarcoidosis, an inflammatory disease that affects her breathing and limits her mobility, Joyner works tirelessly to reach as many women as she can, both one-on-one and in large group settings.
“[African-American women] are unique as far as breast cancer is concerned. There’s a uniqueness about us [in incidence and survival rates] that hasn’t been discovered yet because not enough of us have participated in research. But it’s all how you present the [message] to African-American women, and sticking a brochure in our hands isn’t going to do it,” says Joyner.
Instead, Joyner calls on church leaders for an invitation to speak to their congregations and addresses groups attending conferences of the African-American United Methodist churches and other black organizations. Next on her list is handing out Sister Study brochures to women in hair salons.
“I get a great response when I speak to women one-on-one. There are times when women say I don’t have a sister or I don’t know anyone with breast cancer, but I don’t let them leave me without giving them a brochure because I know that once they [walk away] they’ll come up with somebody they know and I don’t want them to be empty-handed,” says Joyner.
Joyner says being involved in the Sister Study, both as a participant and advocate, has helped ease the pain of losing her sister, Carrie Noland, to breast cancer four years ago, and given her the satisfaction of knowing her efforts may help prevent future generations of women from getting the disease.