Woman raising awareness for a deadly form of breast cancer nobody talks about

NBC33 Staff

POSTED: Tuesday, October 29, 2013 - 12:30pm

UPDATED: Monday, November 4, 2013 - 3:48pm

Those who have it say Inflammatory Breast Cancer is the breast cancer nobody wants to talk about. IBC is the most aggressive form of breast cancer. It's also rare, accounting for only 5% of breast cancer cases. 

After being diagnosed, a Louisiana woman who's now living in Floriday is working to raise awareness about IBC. Meredith TerHarr from WJHG in Panama City Beach, Florida, has Gaynell Ash's story. 

Gaynell Ash says, "You do live each day, knowing." Ash is one of the 'Other Five Percent," a small percentage of women fighting breast cancer who are diagnosed with the rare, most aggressive form - Inflammatory Breast Cancer. 

"Normally, IBC does not present with a lump, but I did feel one and immediately went and had it checked out. It was actually two years ago, today," explains Ash.  Gaynell Ash had never even heard of IBC before, and now she wants all women to know what to look for. "It  presents with redness, swelling of the breast, itching and pain and most people think breast cancer doesn't hurt, but it can. you could be told its a cat scratch or a bug bite, delayed diagnosis is not good," Ash explains.

IBC is more like cotton candy - it's weblike. It doesn't show up on a mammogram like a normal lump would. So, by the time it's found, it's Stage 3 or Stage 4.  Ash says, "Prognosis is - within the first five years, 60% will not make it."

Gaynell has a large team of supporters behind her for the "Making Strides Against Breast Cancer Walk." Ash says, "We are going to try to promote awareness about IBC and get the word out there. So many are misdaignosed by their doctors as having a rash, or they are giving antibiotics. And there is no time. It can appear overnight!"

Gaynell's sense of humore and determined spirit are helping her defy the odds. She says, "there is hope, there is always hope."  Just this past weekend, Ash and nearly 50 of her friends and family walked in Panama City Beach, Florida, to make a difference and raise awareness. 

For more information on Inflammatory Breast Cancer, click here. 

If you or someone you know has recently been diagnosed with IBC, and you are looking for information. Click here for the IBC Netork Foundation. 

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Thank you the great IBC story. I met Gaynell as I do was dx with Triple Negative Inflammatory Breast Cancer. As my kids say, "when I didn't die" I started the IBC Network because this 200 year old disease was not getting the attention needed. What was started using social media to network women has turned into a foundation, funding research. The lack of education, even for the medical community is shocking. We can make an impact here.
Thank you, Terry Lynn Arnold
www.theibcnetwork.org

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