BOSTON -- Inflammatory breast cancer is a rare, but deadly disease. Doctors say it is often difficult to diagnose because the symptoms are quite different from typical breast cancer.

Incidents of IBC rose 25 percent in the last decade, and Priscilla DiBlasi, of Everett, is among the 1 percent of women who get this disease.

"This little thing here says 'survivor' and it's a pendant that I, that I wear," said DiBlasi, whose artwork provides an escape from the loneliness of surviving a cancer most people know little about.

"We went out on the deck and had a glass of wine," she told NewsCenter 5's Kelley Tuthill.

That's when DiBlasi's breast started hurting. "I went in after that, got ready for bed, my breast was red, hot, swollen. It was immediate. I went to the emergency room. They thought it was an infection, maybe lyme disease, poison ivy."

One month later, DiBlasi discovered a lump, a more typical sign that a woman has breast cancer. At that point, further tests were ordered, and the doctor confirmed that Priscilla had inflammatory breast cancer.

The doctor "gave me a book on breast cancer, like a 300-page breast cancer book, and I looked through it and there were three lines on inflammatory breast cancer in this entire book." DiBlasi said, "I thought I was going to die; there's nothing they can do."

Breast surgeon Sue Troyan, who works at Boston's Beth Israel Deaconess Medical Center, said that historically, the outlook for women diagnosed with IBC was dismal. "But what we have learned," Troyan said, "is that if you use of combination of chemotherapy and radiation therapy and surgery, we get much better results. Now many of us have 20-year, even 30-year survivors in our practices."

Troyan said inflammatory breast cancer is aggressive, but rare. Warning signs include redness, warmth and swelling, as well as breast skin that appears discolored or dimpled. Heaviness or pain in the breast can also be symptoms.

It's named after the appearance of the breast in women who develop this disease. Troyan said, "These cancer cells are incredibly good at getting into the lymphatic vessels. Those are the vessels that drain the fluid from the breast, and they will get in and plug up the lymphatic vessels that are draining the breast and in doing so, fluid backs up, and as the fluid backs up into the skin and the breast tissue it becomes swollen skin."

On average, only 25 to 50 percent of women with IBC will survive at least five years. But those numbers are improving with more aggressive treatment and more awareness. Priscilla has been living with this disease for two years and she has every intention of surviving.

"It's not a death sentence," DiBlasi said. "Every single day there are new things coming online. The whole thing is finding it early, getting in there. And even if you don't, there's still hope. I'm feeling great and ready to move on. I think there's absolutely hope and it's not a death sentence. It absolutely is not a death sentence. It's a sentence to wake up and smell the roses and live today."

Also rare is men developing breast cancer. Men account for about 1 percent of all breast cancer cases. Signs to look for include abnormal lumps or swelling as well as skin changes.

Resources:

Inflammatory Breast Cancer Research Foundation