Inflammatory Breast Cancer

It is called “the silent killer” because this type of breast cancer slips by mammograms undetected, and it even evades ultrasounds and some biopsies. It is often diagnosed too late, when the cancer has already spread throughout the body. Usually, new patients are categorized as Stage 4’s—plopped right into the final stretch of breast cancer’s four-part progression. For years, inflammatory breast cancer (or IBC) has flown under the medical community’s radar. Ask an X-ray tech, a nurse or a family care physician about it, and more often than not, you’ll get a dumbfounded stare or a surprised “Huh?” in return.

Richard Smith has seen IBC at work first hand, and he prefers to label it “the loneliest disease.” Six years ago, he was living with his wife of nearly 30 years in the intimate lake community of Hopatcong, N.J. Now, 60 and a retired project coordinator for an engineering company, Smith lives alone.

But what makes IBC really lonely is that it is so misunderstood, he says. Doctors are very positive about treating common breast cancer, and people carry that same hope for IBC. During his wife’s treatment, Smith says he constantly fielded the same two questions: Why wasn’t Doracina cured already and when was her mastectomy? “People just don’t understand,” says Smith. “You feel alone, as if you have some kind of rare exotic disease, and you’re the only one out there to ever deal with it.”

Smith’s wife, Doracina, was a stout, black-haired Brazilian woman, fluent in Portuguese and Spanish but who stumbled a bit with her English. When her left arm started swelling in the late summer of 2000, Smith scheduled a doctor’s appointment and made sure the physician spoke Spanish.

“I wanted Doracina to be comfortable,” he says. But the doctor immediately diagnosed cancer and ordered her patient to get an ultrasound and a mammogram. Smith was floored; he did not understand what these tests had to do with a swollen arm.

But biopsies and a bone scan would later confirm that Doracina, at age 61, had Stage 4 inflammatory breast cancer. The tumors had already metastasized into her bones.

Within two weeks, Doracina was in chemotherapy, and after two months of aggressive treatment, Smith says he realized that his wife was going to die.

Like many Americans still today, the Smiths had never heard of IBC. They had no idea that different types of breast cancer even existed, or that IBC strikes women at an average age of 52—10 years younger than common breast cancer. What information Richard Smith could find while surfing the Internet was that IBC was fairly rare, spread quickly and carried a relatively short life expectancy after diagnosis (the disease-free survival rate for IBC, as reported in research funded by the National Institutes of Health, is less than two and half years).

According to Dr. Massimo Cristofanilli, one of a handful of IBC experts in America: “There has been an increase in the incidence of IBC in recent years, but its exact prevalence is unknown.” The first-ever medical clinic devoted to diagnosing and treating IBC will open at the end of October in association with the MD Anderson Cancer Center in Houston, Texas. Dr. Cristofanilli is slotted to direct this clinic. Based on his estimates, about 4,000 American women have been diagnosed with IBC. Consequently, clinical research on IBC is limited to small trials and many doctors are unfamiliar with the cancer and how to treat it.

Today, the first-line of treatment for IBC patients is a stringent chemotherapy regime that is often administered weekly and can involve up to three drug combinations. The secondary treatment for IBC is radiation therapy and/or surgery (typically a mastectomy). If a woman responds well to treatment and her cancer seems to disappear, she is labeled NED, for “No evidence of disease.” But for most, the NED label isn’t for life. IBC sufferers are rarely fully “cured,” because the tumors can—and often do—return. To try and prevent this recurrence, many doctors prescribe hormone therapy and further radiation.