Women who were diagnosed with inflammatory breast cancer between 2008 and 2012 can expect to live about twice as long as women diagnosed between 1973 and 1977—that is, if they are white, according to the results of a study conducted by researchers at the University of Michigan’s Rogel Cancer Center.

Inflammatory breast cancer (IBC) is a rare form of breast cancer that manifests as one or more changes in the skin of the breast. These changes commonly include redness and a type of dimpling known as peau d’orange—French for “orange peel skin.”

 

The University of Michigan study found that women diagnosed between 2008 and 2012 lived 100 months, or roughly eight years, after diagnosis on average, while women diagnosed between 1973 and 1977 lived an average of 50 months, or roughly four years, after diagnosis, according to the university’s website.

First study author Hannah Abraham attributed the spike in survival duration to increased awareness of the disease as well as advances in treatment. Chemotherapy, (followed by surgery and radiation) is now widely recognized as the most effective method of treating IBC. Study coauthor Sofia Merajver, MD, PHD, specifically cites the work of patient advocates such as Terry Arnold, the founder of the IBC Network Foundation, as having raised the disease’s profile.

“This is a rare, orphan disease,” Merajver said. (An orphan disease is a malady that affects fewer than 200,000 people.) “We owe a lot to the long-term survivors and tireless advocates who have raised awareness about IBC within the general public as well as the medical community.”

Troublingly, however, although racial disparities between Black and white women’s survival are subsiding somewhat, the study’ authors found that white women with IBC live about two years longer than their Black counterparts. The disease is also more common among Black women—4.5 Black women out of 100,000 will develop it in their lifetime, for example, compared with just 2.6 white women.

“Our findings make it clear that more research is needed to understand factors behind these racial disparities,” Abraham said. “These factors might include awareness about the signs and symptoms of IBC among Black patients, biological and genetic differences, delays in diagnosis and treatment, the standard of care patients receive, including follow-up and survivorship care, and environmental factors.”

The study was published in the journal Breast Cancer Research and Treatment.

Unlike many other types of breast cancer, IBC is fast-moving and typically affects younger women. Because of its rarity, IBC has been somewhat neglected by cancer researchers; as a result, no targeted therapies are currently available to treat it.

To read about the latest research on IBC, click here. Or, for a more comprehensive overview of IBC, click here.

To learn more about racial disparities in cancer, click here.