Inflammatory Breast Cancer (IBC)

Inflammatory Breast Cancer (IBC) is a rare, aggressive form of breast cancer that invades the lymphatic vessels (little tubes in the skin that carry fluid called lymph back to the blood vessels) in the skin of the breast. It is based on a clinical diagnosis (there are no known genetic markers of IBC) which can make it hard to diagnose. The clinical features may include the rapid development (less than 6 months onset) of at least a third of the breast having redness, dimpling with little pits like orange skin (hence the descriptive term Peau d'orange which is French for orange peel) of the breast and/or a swollen breast with or without a lump.

 

When diagnosed with IBC, it is either stage III or IV since by definition it has already invaded the skin lymphatics. Know that being diagnosed at a later stage is NOT your fault. It grows quickly (sometimes within weeks!), may be misdiagnosed as an infection or injury, and there are no early signs. It may not present as a lump, may be difficult to detect on screenings (it often doesn't show up on mammogram), or grows so quickly that it manifests between mammograms.  

 

IBC accounts for 1-5% of all breast cancer diagnoses but disproportionately is responsible for 5-10% of breast cancer related deaths because it is so aggressive. IBC has historically carried a poor prognosis (40%, 5-year survival rate), but those statistics are improving thanks to rapidly evolving breast cancer treatments. Women diagnosed with IBC are younger than women diagnosed with other breast cancers and it is more common and diagnosed at a younger age in African American women than white women. IBC is more frequently hormone receptor negative (also known as Triple Negative Breast Cancer or TNBC). Treatment for IBC can be unique in comparison to other breast cancers. Trimodal therapy is used which means first receiving neoadjuvant chemotherapy (giving chemotherapy before a primary cancer treatment like surgery in order to make surgery more successful), surgery, and then radiation. Having surgery first in IBC would be ineffective because the margins or borders of the cancer are not well defined. The standard treatment for stage III (and some stage IV) is to shrink it first with chemotherapy, cut it out and radiate it.  

 

There are 5 multi-disciplinary IBC clinics in the United States. Multidisciplinary means that the medical center has medical oncologists, breast cancer surgeons, radiation oncologists, pathologists, plastic surgeons, lymphedema specialists and researchers that are well versed on treating and studying IBC. It is very important to have an entire oncology care team working together for you because IBC treatment is unique and needs to be just as aggressive as the disease. The treatments need to be done in a particular order within a certain time frame based on clinical research. The five IBC multidisciplinary centers in the United States are MD Anderson (Houston, Texas), Dana Farber (Boston, MA), Duke Cancer Institute (Durham, NC), The James at The Ohio State University (Columbus, OH), and Memorial Sloan Kettering (New York, NY). I am a big fan of second opinions. If you are treated by a local oncology team, you can still get a second opinion (or a third!) at an IBC treatment center and the two teams can work together. When booking your appointments, make sure to be clear that you have Inflammatory Breast Cancer, because you need to be seen quicker and get treatment faster than other types of breast cancer. 

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Unfortunately, Inflammatory Breast Cancer is awful, scary, and life threatening, but thankfully there is a consensus treatment algorithm plan, treatment teams at multidisciplinary centers, and dedicated researchers working toward a cure. Know that while it is a rare disease, you are not alone. My hope is that you find the right treatment team for you to guide you through your active treatment and support you into survivorship.