PORTLAND, Ore. – Most people equate the words "breast cancer" with finding a lump.

But there is a rare form in which that tell-tale sign is simply not there.

It's called inflammatory breast cancer or IBC, and it is a more aggressive form of breast cancer that tends to strike younger women. The biggest problem is that few know about it so it's not being caught until very late.

Up until a few months ago, the only breast cancer Carre Elliott knew about involved a lump.

So when she walked into the doctor's office thinking she had mastitis - a common infection in the breast and a common misdiagnosis of IBC - she was blown away by what she heard.

"She said, 'Carre, you have stage three breast cancer,' " Elliott said. "I'm like 'Oh my god.' "

Inflammatory breast cancer accounts for just 1 percent to 5 percent of all breast cancer cases in the U.S. But by the time it's detected, it is usually at stage 3 or 4.

Maurisa Gates has been IBC-free for three years now, but it took a while for doctors to make the diagnosis. A mammogram and ultrasound didn't turn up anything, but she knew something was not right.

"I did know my body, and I knew that something was going on, and I continued to check," she said. "I just didn't blow it off after the clean mammogram," Gates said.

When her doctor delivered the news, Gates said it was a shock. She had never even heard of IBC.

"You get the news you have breast cancer and then you find out it's this ... rare form of aggressive type of breast cancer, and it was overwhelming," she said.
       
Symptoms of IBC may include:

• Redness
• Swelling
• Warmth
• Increase in breast size
• The skin may also have ridges or appear pitted, like the skin of an orange
• The nipple may also become inverted.

These symptoms usually develop in a matter of weeks or months - all without the presence of a lump.

"We are trying to understand the biology of inflammatory breast cancer and what makes it so aggressive," said Dr. Alison Conlin, a researcher at Providence Cancer Center.

The center is participating in a clinical trial focused on finding treatments for breast cancer, including IBC. Elliott is part of the trial.

Treatments for IBC include chemotherapy, surgery and radiation. Patients in the clinical trial receive an additional round of drugs called anti-angiogenesis drugs. They target blood vessel growth to try to choke off cancer cells. The commercial name for the drug is Avastin, and the research is promising.

As for detection, both Elliott and Gates say you should do your self-breast exams and know your body - be aware when something changes and don't be afraid to find out what that change is.

Both women admit they hadn't heard of IBC before their diagnoses, and they want to get the word out about the signs and symptoms of IBC.