LatinaSHARE: Helping Latinas with advanced breast cancer

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LatinaSHARE: Helping Latinas with advanced breast cancer

02/10/2015 08:27AM | 7575 views

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.

We wanted to make sure All the Latina voices were heard. This Novela which can be downloaded from our Spanish website or they can call our helpline to get it, threads various myths throughout the story of two sisters, one which gets diagnosed with breast cancer.

“The goal was to educate our communities and break the myths and barriers that many times can hold Latinas back from becoming pro-active in their health,” Sampayo told Saludify.
“We have a toll free helpline number which is 844-275-7427 which is managed by Latina survivors who have been trained to listen and provide emotional support and resources for our callers.
We are able to match the caller if they are interested with another woman who is a peer, for example if a young woman who is calling needs ideas on how to let her children know she has breast cancer, both our Co-director and I can take that call since we were diagnosed while raising small children.”

Sampayo stated some of the best success stories are those of LatinaSHARE members, the majority of which are breast or ovarian cancer survivors. “…We understand what it feels like to experience this journey and work daily to ensure women do not feel alone! We have countless volunteers who receive support and help from us then go on to advocate for others”.

Educating the general community so that they can understand that they do have options and that it’s quite important that they become part of their health team is an important step in improving Hispanic women’sbreast cancer prognosis, she explained. Many Latinas coming from other countries are taught to let the medical providers take the lead instead of advocating for themselves. LatinaSHARE can help bridge those gaps between communities and medical treatment.

“Most important: You are not alone and there is support and information for you. You must take charge of your life so that you can be there for your family and friends and most importantly for yourself! We know our bodies and if something doesn’t feel right we need to take charge and find out what is going on with our bodies,” Sampayo said in closing. “Another way of talking charge is by seeking help from organizations like LatinaSHARE and Count Us.”