Surviving cancer is difficult at any age, but a diagnosis of breast cancer brings unique concerns for a young woman. She might be a student intent on finishing her college education, or a recent graduate embarking on a new career, or perhaps she is a new mother raising active young children. One young woman with breast cancer might even fit into all three categories. In addition to the fact that the disease and its treatment can be painful, difficult, and time consuming, the breast cancer that targets younger people is often an aggressive disease. How do these young women cope?
Dealing with breast cancer will soon be easier for the young survivor with this disease thanks to the Center for Disease Control and Prevention (CDC), which recently authorized funding of $2.2 million for the creation of the Gulf States Young Breast Cancer Survivors Network. The Gulf States Young Breast Cancer Survivors Network, a new coalition comprised of health facilities in Alabama, Louisiana, and Mississippi, will provide the support these patients need. Its partners include the University of Alabama at Birmingham School of Nursing, the Louisiana Cancer Prevention and Control Programs at the Louisiana State University (LSU) Health New Orleans School of Public Health, and the University of Mississippi Medical Center. A fourth center, the Mary Bird Perkins Cancer Center of Louisiana, which developed the successful SurviveDat program 3 years ago, will be part of the coalition as well.1
A MULTIMEDIA PROGRAM
Working together, the three medical centers will create a web site and social media presence designed to provide online support and resources to young breast cancer survivors. The Mary Bird Perkins Cancer Center will provide expertise and technical support for this multistate and multimedia initiative.
Donna Williams, DrPH, who is the director of LSU Health New Orleans School of Public Health’s Cancer Prevention and Control Programs, will lead the coalition. Williams explains that the goal of this program is to enable the young breast cancer survivor to identify what she needs to improve her quality of life, whether it is medical care or supportive services. After the young survivor has identified what will help her progress, the next step is to be her own best advocate. To that end, the coalition will teach these women how to use social media. “Messages on social media will address family history and genetic risks, psychosocial health and support, reproductive health and fertility, family support, health monitoring, and evidence-based preventive lifestyle behaviors such as maintaining a healthy weight, reducing tobacco use, and excessive alcohol use,” explained Williams.1
A large number of young women with breast cancer live in the three states served by the coalition facilities. Among states with breast cancer deaths for women younger than 50 years, Mississippi ranks second, Alabama is fourth, and Louisiana ranks fifth. 1 Furthermore, although the incidence of breast cancer among black women is lower overall than among white women, it is higher in black women younger than 45 years. Black women comprised 40% of the cases of breast cancer in young women diagnosed in Louisiana, Mississippi, and Alabama from 2007 to 2011.1 This population will derive great benefit from the program.
Although they live in parts of Louisiana, Mississippi, and Alabama that are rural and have a low-income demographic that discourages traveling to in-person support groups, the women who live in those areas are able to take advantage of these resources when they are made available online. This is because a large number of them have smartphones. According to the Pew Research Center, almost 60% of black women have smartphones, a number that is significantly higher than the number of white women who do. Pew notes that smartphone use among all young women is high.1,2
The new project’s web site and social media will list a variety of national, state, and local resources for young breast cancer survivors. These will range from educational and technical information on breast cancer to more mundane yet practical advice on matters such as what are the best local sources for wigs, or who offers lessons on the technique of applying makeup to compensate for the effects of chemotherapy. There will also be videos and plenty of opportunities for these survivors to share their stories and offer personalized advice. Family members, caregivers, and even providers will have their own resources in the Network as well.4
Bette Weinstein Kaplan is a medical writer based in Tenafly, New Jersey.
1. SurviveDat. http://www.survivedat.org. Accessed December 16, 2014.
2. Cell phone and smartphone ownership demographics. Pew Research Internet Project Web site. http://www.pewinternet.org/data-trend/mobile/cell-phone-and-smartphone-ownership-demographics/. Accessed December 16, 2014.
3. The Mobile Consumer: A global snapshot February 2013. Slideshare Web site. http://www.slideshare.net/duckofdoom/mobile-consumerreport2013-17748641?related=1. Accessed December 16, 2014.