Breast cancer is the most commonly diagnosed cancer among Hispanic women, according to the American Cancer Society, and while rates of breast cancer in Latinas are lower than those of non-Hispanic whites, Latinas are more likely to have breast cancer diagnosed in its later stages.
To help the Latina community understand breast cancer and what it means to live with the advanced disease, the advocacy organization, LatinaSHARE, has developed Count Us, Know Us, Join Us, a program created to amplify the voice of people living with advanced breast cancer. Through this program, Latinas and their families are able to gain access to support, education, awareness and advocacy opportunities.
“Count Us, Know Us, Join Us was started by SHARE and other cancer organizations and Novartis to fill the void for people living with advanced breast cancer, their caregivers, supporters, friends, and family members,” Ivis Sampayo, director of LatinaSHAR, told Saludify.
“Together we provide various important resources for the Latino community dealing with advanced breast cancer. LatinaSHARE is listed on their site so women and their family and friends can call us and receive emotional support, educational tools and information about various resources including advocacy opportunities. When a woman had advanced cancer it’s quite different from an early stage diagnosis. These woman usually feel alone and isolated, especially in October when “Pinktober” (breast cancer awareness campaigns) takes over!”
Sampayo indicated any Latinas are still afraid of the word “cancer” and are not willing to take care of themselves because of this fear. As Latinas we are brought up culturally to take care of our families first, then ourselves, she explained, but it is important to understand that if women don’t take preventive measures and become part of their own health team, they can set themselves up for a worse prognosis.
“Many Latinas think they will lose their breasts if they are diagnosed with cancer or that it’s an automatic death sentence,” she added. “Although women can die from metastatic breast cancer not all women do. Other beliefs are that they will always have to get chemo and lose their hair, that their partners will leave them, etc.”
Despite breast cancer being one of the most visible and supported diseases in the world, many women with advanced breast cancer (metastatic) have very different needs and face unique challenges compared to those who have earlier stages of the disease. To help Latinas overcome cultural and traditional barriers, as well as understand the importance of actively paying attention to their health, LatinaSHARE designed and developed a comic book style Novela which breaks many of the barriers heard within Spanish support groups.
The organization held focus groups with various Latino ethnicities and spoke both with breast cancer survivors and non survivors from Spain, DR, PR, Mexico, Ecuador, Guatamala and Colombia.