It's called Inflammatory Breast Cancer and it is often fatal. But there is a unique, locally-based effort to fight this disease.

"It was tough," says Owen Johnson of Bainbridge Island, remembering one of the hardest periods of his life.

Today, he is a man with a mission. Johnson's not a doctor, or a researcher, but he's doing what he can to find a cause, a diagnosis, and a cure for inflammatory breast cancer.

"Neither Marilyn nor I had any idea what IBC was," he said.

Johnson's mission began more than seven years ago when his wife Marilyn got sick. After months of wondering what was wrong, she was finally diagnosed with inflammatory breast cancer.

"After what we call every treatment known to man, she died at age 51, 15 months later," he said.

IBC usually does not show up in mammograms and does not develop as lumps in the breast. University of Washington Breast Cancer specialist Dr. Julie Graylow says early symptoms include rapid, overnight swelling of the breast.

"The bulk of the breast is very red, it's swollen," she said.

You may also see a red, blotchy rash, experience intense itching and stabbing pain. But by the time those symptoms have appeared, Dr. Graylow says the disease has already traveled through the body, and that's what makes it so deadly.

Even with those early symptoms, the disease is often misdiagnosed as a breast infection or early signs of menopause.

Now, researchers with the National Cancer Institute believe the rates of IBC are actually rising. In 1988, two out of 100,000 women got the disease. By 1999, that number increased to 2.5 per 100,000 women. At the same time, the more common forms of breast cancer were decreasing.

"We decided the answer was in research," Johnson said.

So Johnson founded the IBC Research Foundation. Job number one: figure out how to find this aggressive cancer sooner.

"There may turn out to be such a thing as early diagnosis," says Johnson, "today there isn't." Early diagnosis means saving lives.

For More Information:

If you want more information about Inflammatory Breast Cancer or the IBC Research Foundation, you can contact them at 1-877-STOP-IBC or go to their Web site at www.ibcresearch.org.