Ultimately the diagnosis of IBC rests on a biopsy that shows cancer cells in the skin of the breast. If a patient suspects that she has IBC, she should contact her primary care doctor who can start the diagnostic process. If initial treatment doesn’t resolve her symptoms, she should ask for a referral to a breast surgeon who can do a biopsy.
Patients have an important role in the diagnostic process. Doctors are sometimes reluctant to suspect IBC because it is rare. Doctors who have seen IBC cases before may be thrown off track by a patient whose symptoms that don’t fit their previous experience. Unfortunately, some women with IBC still hear, “You are too young to have breast cancer,” or “The mammogram is clear, nothing to worry about,” from their doctors. It’s important to be persistent in getting an accurate diagnosis when IBC is a possibility.
In 2008 the National Comprehensive Cancer Network (NCCN) recognized that IBC is a distinct form of cancer that needs its own treatment guidelines.
The current best practice for treating IBC starts with chemotherapy. Because doctors know that the cancer is already in the lymphatic system, they worry that those cancer cells have spread to vital organs. Chemotherapy is a systemic treatment that can kill those wandering cells right away.
After chemotherapy, a mastectomy with lymph node removal is the preferred surgery. Unfortunately, since there isn’t usually a lump and since the cancer is in the skin, a lumpectomy is not possible.
Depending on the results of the pathology report, more chemo may be done after surgery. If the pathology looks good, the patient proceeds to radiation treatments.
The next steps depend on the characteristics of the cancer. If the patient’s tumor cells were Estrogen Receptor positive, then she will receive hormone therapy. If they were Her2neu positive, she will get Herceptin.
Because IBC has a high recurrence rate within the first three years, doctors follow their IBC patients very carefully with frequent physical exams and blood work. If any symptoms of possible metastasis appear, doctors will order further imaging tests or biopsies to check to see if the cancer has spread.
At one time IBC was considered a certain death sentence. However, treating it with chemo first, followed by surgery and radiation has dramatically increased survival rates. An individual woman's prognosis depends on the characteristics of her tumor and her stage at diagnosis, so each woman needs to discuss her situation with her own doctor.