Health News / October 2006
IBC, The Ugly Stepchild
Despite the high profile of breast cancer, many women are unfamiliar with the rapid-onset, particularly aggressive form known as IBC. The symptoms of Inflammatory Breast Cancer can be painful and confusing and the prognosis is often poor. Treatment is intense, usually lasting 12 to 18 months and requires a full mastectomy. “IBC is known as the ugly stepchild of breast cancer,” says Ginny Mason, executive director of the IBC Research Foundation and a 12-year survivor of the cancer.
Since the disease doesn’t usually present as a large tumor, it is hard to get tissue to study and define. Plus, IBC symptoms vary, with pain or no pain, swelling, or intense itching, warmth or rapid changes in breast size. They can include a bruise that doesn’t fade or nipple inversion or changes in breast appearance. Patients with IBC don’t have all the signs and symptoms of the disease at once.
Consequently, IBC has been widely misdiagnosed. Many of the symptoms don’t resemble those of other cancers, and were mistaken for everything from mastitis, a breast infection also marked by redness and swelling, to spider bites, food allergies or shingles. In some cases, women with IBC were advised to stop wearing underwire bras, change detergents, stop drinking caffeine and stay away from carbs while their untreated cancers progressed. The stigma lingers still. “Most people don’t want to know anything about IBC,” says Mason. “Doctors often ask us not to put our brochures in their office, because they believe they will frighten women with any form of breast cancer.”
Recently, however, IBC is getting more attention. Scientists are beginning to believe that all breast cancers, at end stage, model the diffuse, aggressive behavior of IBC. They think if breast cancer is to be cured, research must focus on the disease at its most aggressive.
Cells in most cancers start in formation, moving in an organized fashion behind a wall. While half of patients with IBC see or feel a lump, the disease is never confined to a solid tumor. Instead, it spreads through the circulatory system, growing in nests or sheets that extend diffusely over large areas of the breast.
An IBC lump that is later detected on a mammogram, feels similar to a lump from noninflammatory breast cancer, but patients with IBC have a guerrilla-style disease, characterized by cancer cells that spread diffusely and swell the breast.
IBC eventually invades the skin’s lymphatic system, causing swollen lymph nodes, red or purple discoloration and skin thickening or pitting. Signs can appear gradually–or overnight. But by the time IBC symptoms appear, the cancer is almost always at a late stage.
Everyone agrees IBC is complex. It has no known cause and no one knows what factors increase risk for the disease. There seems to be no familial disposition and no dietary factors associated with it. IBC does tend to strike younger women-the median age at diagnosis is 52 compared to 62 for breast cancer diagnosis, according to the IBC Research Foundation.
Researchers don’t know if IBC is related to more common forms of breast cancer or if it’s a different type altogether. Current estimates suggest it accounts for 2 to 10 percent of all breast cancer diagnoses in the United States but as many as 25 per cent of breast cancer fatalities. IBC appears to be on the rise–it has doubled in the past 10 years, but whether the increase is due to better diagnosis, no one is certain.
Despite the unanswered questions, new treatments and better methods for diagnosis mean more patients survive. “According to the latest studies, 20 percent of patients will be alive 15 years after being diagnosed,” says Sandra M. Swain, M.D., a senior principal investigator at the National Cancer Institute.
Early diagnosis is the first, most important step. Patients begin chemotherapy immediately, before their mastectomy and subsequent radiation, to target cancer cells in the rest of the body and shrink the nested cancer so surgery is more successful. After surgery, patients are usually treated with additional chemotherapy, followed by radiation therapy. But, with no reliable method for detecting IBC early, a prompt diagnosis can be elusive. Dr. Swain says, “IBC is one end of the spectrum of breast cancer. If we can find the targets that are responsible for the biology of IBC, we can develop therapeutic strategies for this entity. I think that these strategies can also be used for treating other forms of breast cancer that do not present clinically as IBC but have just as poor a prognosis.”
Using chemotherapy, mastectomy and radiation, the average IBC five-year survival rate is currently 40%. Earlier detected increases the five-year survival rate. The best news is that ongoing advances in treatments and therapies continue to improve the prognosis.
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