NEW ORLEANS –Three years ago, the Centers for Disease Control and Prevention (CDC) awarded the Louisiana Cancer Prevention and Control Programs (LCP) at the LSU Health New Orleans School of Public Health almost $1 million for a project to raise awareness and develop support for young breast cancer survivors in south Louisiana. Called SurviveDAT, its success recently helped lead the CDC to award $2,242,000 for a five-year project expanding similar online resources to north Louisiana, Mississippi and Alabama.

The new project, which will be tagged as the Gulf States Young Breast Cancer Survivors Network, is a collaborative effort of LCP at the LSU Health New Orleans School of Public Health, the University of Mississippi Medical Center and the School of Nursing at the University of Alabama at Birmingham (UAB), which already has a highly regarded local initiative in place. The three, led by LCP Director Dr. Donna Williams at the LSU School of Public Health, will work together to create a website and social media presence that will provide online support and resources to young breast cancer survivors, with Mary Bird Perkins Cancer Center, an original partner in SurviveDAT, providing additional support in the form of resource gathering and graphics creation.

There are several reasons why the CDC is funding such an online support project and why these partners have come together:

  • Young breast cancer survivors face unique issues when dealing with the disease, including more serious strains of the disease, fertility questions and barriers, partner/child concerns, career implications, sometimes severe financial ramifications and more.
  • The three states feature a preponderance of breast cancer among young women, and rank second (Mississippi), fourth (Alabama) and fifth (Louisiana) in breast cancer deaths for women under 50. In addition, though black women have an overall lower breast cancer incidence rate than white women, they have a higher incidence of the disease under age 45. From 2007 to 2011, 40 percent of the young breast cancer cases diagnosed in Louisiana, Mississippi and Alabama were in black women.
  • Much of Louisiana, Mississippi and Alabama is rural and/or low-income, which limits people being able to meet at or travel to in-person support groups; however, they are able to tap into online resources. The Nielson company says that 92 percent of people 18-29 use social media and 73 percent of people 30-49 do. The Pew Research Center says that women use social networking sites at higher rates than men, while young black women use them at significantly higher rates. Pew also says that almost 60 percent of black women have a smartphone, which is significantly higher than the number of white women who do; while almost half of all blacks with an income under $30,000 do as well. And smartphone use among young women, in general, is very high. All of these facts point to online resources and social media as being an effective way to reach young breast cancer patients.

“I didn’t want to deal with what was going on. Or I couldn’t deal. Because I didn’t have a really a group to talk to. None of my friends understood what I was going through,” said Shana Barr, a SurviveDAT member.  “Everyone copes with tragedy in their own way. And I can’t tell you how to cope. I can tell people that they’ll regret it if they don’t find a group to talk to. ‘Cause you feel like you’re alone when you’re going through that. My best advice to anyone is … find a group. It helps.”

It’s that need that propelled SurviveDAT’s creation and the CDC to reach out to young breast cancer survivors across the gulf states.

“The CDC has long recognized the benefit that support can provide cancer patients when it comes to quality of life. However, there are a lot of people who suffer from cancer, but who live too far from an in-person support group or can’t afford to get there.” said Helen McMillan, SurviveDAT program manager. “Now, thanks to this grant, young breast cancer survivors in the three states with the most need can go online to find the advice, help and support they need. It’s a great example of how social media can help people.” 

Expanding on the current Louisiana and Alabama offerings, the project’s website and social media will contain a variety of national, state and local resources from each state for young breast cancer survivors ranging from educational and technical information on breast cancer to more day-today practical advice on matters such as to where to buy wigs locally or listing makeup artists skilled in creating eyebrows for women who have lost them to chemotherapy. There will also be videos and interactive opportunities for these women to share their stories, provide advice and more. In addition, there will be helpful information for the people surrounding young breast cancer survivors, including providers, family members and caretakers.

To find out more about the Gulf States Young Breast Cancer Survivors Network, call Helen McMillan at 504-568-5858 or email her at hmcmi1@lsuhsc.edu

 

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AuthorLaura Ricks