SurviveMiss aims to help young breast cancer survivors thrive
By Cynthia Wall
When younger women find they have breast cancer, they may face hurdles older breast cancer survivors don't encounter.
Helping younger Mississippians battling breast cancer and its effects is the primary goal behind SurviveMiss, Mississippi's Young Breast Cancer Survivor Network, a website, Facebook and Twitter account launched recently.
"Social media is important to young people, and we're seeing patients younger and younger," said Dr. Barbara Craft, who chairs the University of Mississippi Medical Center's University Cancer Care breast team and leads the Mississippi website effort. "It's important for them to have reliable information."
When younger women have breast cancer, they may be raising children, starting careers, or dealing with other hurdles those in their 20s, 30s and early 40s often face, including fertility and body image issues.
The problems are very real to Freda Johnson, 44. The Gulfport resident was 41 when diagnosed with Stage 4 breast cancer. She'd just returned to the Mississippi Gulf Coast and gotten a retail job she loved.
"As a young person, you are still working. At my age, I was in my prime. My main focus was getting on up the ladder," Johnson said. "Once I was diagnosed, all that changed. Everyone was like, 'You'll just have to take off a little.' But my immune system was so low, I couldn't be around that many people. I had to leave my job."
She said she found information on several online breast cancer forums, keeping in mind Craft's admonition to view others' results without automatically thinking that would apply to her.
"I found solace in the questions and answers and in helping others there," she said. Today, she hopes SurviveMiss will help other young women forced to deal with breast cancer, and she's serving on the SurviveMiss advisory board.
The website includes information on genetic testing, reproductive health and fertility, family support, dating and many other topics. It also will include links to state and national medical and support resources. Craft said the site is still growing, and her staff is working to expand links to resources throughout the state.
A $2.2 million grant funds the idea and expands work begun four years ago at the Louisiana State University Health Sciences Center in New Orleans and the Mary Bird Perkins Cancer Center in Baton Rouge. The federal Centers for Disease Control and Prevention grant, Increasing Awareness and Support for Young Women with Breast Cancer in the Gulf South, provides a type of online lounge where young breast cancer patients and survivors can communicate with others walking the same path.
The grant helped create the Gulf States Young Breast Cancer Survivor Network in Louisiana, Mississippi and Alabama. Funding helps each state provide websites and social media outlets devoted to offering information and a place for younger breast cancer patients and survivors to meet, exchange ideas and gain information.
Craft said she hopes that young patients and survivors can find support and solutions to everyday problems they encounter because of breast cancer.
"Ideally, this will be a good source for education. Maybe it will trigger them to come up with questions they can bring back to us. Sometimes, people don't know what to ask," she said. "It's important to remember all breast cancer patients are not the same. What applies to one may not apply to others."
Dr. Srinivasan Vijayakumar, director of UMMC's Cancer Institute, agrees. "We know patients need more than to talk to and see their doctors and nurses," he said. "This type support can be very reassuring, and in a rural state, an online meeting place may resolve issues of traveling long distances to find a support group."
Statistically, breast cancer strikes one in eight women, and some men, usually when they're older, after they've raised families, retired or established themselves in jobs and careers, said Craft, associate professor in the Division of Hematology/Oncology. About 11 percent of those women will be 45 or younger, and a disproportionate share are African-American and live in the Gulf States.
The SurviveMiss site will include updates on new advances in breast cancer therapy, resources throughout the state and forums for breast cancer survivors. Users also can follow SurviveMiss on Facebook and Twitter.
The Gulf States groups also are working with the Young Survival Coalition, an international organization that focuses on women 40 and younger with breast cancer. The coalition will sponsor a symposium Jan. 23 in Jackson for young breast cancer survivors. The coalition will host a meet and great for young survivors from 6:30-8 p.m. Oct. 29 at Underground 119 in Jackson. To attend, sign up at http://evite.me/u73FEJtY4k
The Gulf State Young Breast Cancer Survivor Network
Mississippi: www.SurviveMiss.org; www.facebook.com/survivemiss; @surviveMISS on Twitter