October 04, 2006

What Every Woman Needs To Know

It all started with an email forward. The subject line said "Important: Every Woman Should Read This." A wave film opened on a news report from a Seattle, Washington TV station. Graphic and gut wrenching, it told the story of a little known, highly aggressive and often fatal form of a disease most women think they know plenty about — breast cancer. Shocked, Indy staffers forwarded the 411 to friends. None of us had ever heard of Inflammatory Breast Cancer.

In honor of Breast Cancer Awareness Month, The Independent provides information on the disease below, because as advocates say, "ignorance is death."

Inflammatory Breast Cancer might be this decade's Lyme Disease. Like Lyme back in the '80s, the fatal infection is often misdiagnosed and rarely caught until the victim's body has been ravaged. According to statistics from the medical text Clinical Oncology some 35 % of patients have obvious metastases at diagnosis. That means that by the time it's caught, it's already spread to other parts of the body.

Mammographies may not help. IBC is marked by a lack of tumors or the breast lumps women are taught to look for. Instead, sheets of cancer cells form which are not normally visible by traditional examination strategies. (See sidebar for symptom information.)

According to the National Cancer Institute, Inflammatory Breast Cancer affects between one and four percent of the over 200,000 patients diagnosed with breast cancer each year. It's rare, but could simply be rarely diagnosed. Clinical Oncology notes that a history of treatment with antibiotics for presumed mastitis is common before a biopsy establishes a true diagnosis. Victims are given topical creams for rashes and critical time passes.

Even more harrowing? Clinical Oncology reports that, depending on treatment, disease-free survival rates at a five-year period fall between 25% and 30%, meaning 70 to 75% of victims don't survive. If a patient makes it to the five-year mark, the chances are better, but not much. Forty percent survive.

Susie Roden, a cancer survivor, long-time breast care advocate, and key founder of the South Fork Breast Health Coalition, was one of very few women interviewed by The Independent who had even heard of Inflammatory Breast Cancer. She told the story of a South Fork woman stricken and eventually killed by the aggressive illness. The woman "self-medicated," Roden recalled. When her own ministrations failed to eradicate symptoms, she showed up in the ER. Luckily, the surgeon there recognized the disease. It bought her another year, Roden said.

Roden supported The Independent's effort to increase awareness of the little known killer. It meshes well with efforts to raise awareness of breast cancer this month. On Sunday night, The Coalition, Southampton Hospital's Breast Health Center, The Southampton Chamber of Commerce, town and village embarked on painting Southampton Village pink to kick off awareness month. With bright pink pumpkins at its base, a tree sporting pink bulbs was lit on the grounds of the Chamber of Commerce. Pink lights could be seen in a variety of locales this month, including the Dennison Tower in Hauppauge and the Empire State Building in Manhattan.

Millie Fellinghan of the chamber noted the support of local merchants and municipalities that provided the tree, bulbs and light refreshments.

Roden was credited with prompting the local pinking. "If they can light up the Empire State building, " she said, "we can do something in Southampton."

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