Elucidating an Uncommon Disease: Inflammatory Breast Cancer

Valerie Fraser knew something was wrong when she woke up on New Year's Day in 2007. She felt a swelling in her left breast, but she thought she’d laid on it wrong. Over the next several days, the swelling increased. She’d always had dense breasts, but this was different: The density was not concentrated in one spot but rather was spread over her whole breast, like rubber.

Fraser went to a gynecologist and a radiologist, both of whom thought she had an infection. They thought the masses on the ultrasound were abscesses. But Fraser knew it was something else. She called the local breast clinic in her hometown of Royal Oak, Mich., for an appointment, but they couldn’t see her for another 2 months. So she asked the receptionist whether the clinic's director would take a look at the ultrasound results, and if the director felt she could wait another 2 months, she would wait. Fraser received a call back with an appointment the next day. That resulted in a biopsy a week later. Three weeks after her first symptom, Fraser was diagnosed with stage IIIb inflammatory breast cancer (IBC) and ductal carcinoma grade 2.

Fraser's story is like that of many women diagnosed with IBC. Women are often misdiagnosed with mastitis, an inflammation of the breast. Unlike most breast cancers, which are first detected as a lump, IBC usually starts out looking like a mosquito bite. It can then morph into a rash resembling an orange peel.

Fraser said her diagnosis “threw me into a tailspin.” She combed the Internet and found out that IBC is the rarest form of breast cancer, as well as the deadliest: IBC represents 2.5% of all breast cancer patients, and only 40% of patients are alive after 5 years, according to …