Those who have it say inflammatory breast cancer is the breast cancer nobody wants to talk about.
IBC is the most aggressive form, but it's also rare, only accounting up to five percent of breast cancer cases.
After being diagnosed with the disease two years ago, one woman is determined to raise awareness about IBC.
She says it's absolutely crucial for women to know what to look for, because this form of the disease is often misdiagnosed.
"You do live each day, knowing," says Gaynell Ash who has IBC.
Gaynell Ash is one of the other five percent, one of 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," says Gaynell.
Gaynell had never even heard of IBC before 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,” says Gaynell. “You could be told it’s a cat scratch or a bug bite, delayed diagnosis is not good."
IBC is more like cotton candy, web like; it doesn't show up on a mammogram like a lump would. So by the time it's found its stage three or four.
"Prognosis is within the first five years 60 percent will not make it," says Gaynell.
Gaynell has a large team of supporters behind her for the making strides against breast cancer walk.
"We are going to try to promote awareness about IBC and get the word out there, so many are misdiagnosed by their doctors as having a rash, or they RAE giving antibiotics and there is no time, it can appear overnight," explains Gaynell.
Gaynell's sense of humor and determined spirit are helping her defy the odds.
"There is hope, there is always hope," says Gaynell.