Early April, 1998. The surgeon told me that I needed a biopsy for a form of cancer because the antibiotic he prescribed didn’t work on the red/purple, streaky circle covering a quarter of my right breast. He explained a bunch more, but once he said cancer and lymphatic system, I didn’t really hear much else.

I did make a note of the kind of breast cancer the surgeon suspected—inflammatory breast cancer. Like everyone else I know diagnosed in the 1990’s, I had never heard of it. My dial-up internet didn’t have much information.

The biopsy was scheduled for April 12.

April 20. My 50th birthday. I verbally accepted a job offer even though I still didn’t know the biopsy results. Late that afternoon, the doctor called to say the local pathologists weren’t sure about the diagnosis, so they were sending the slides out to a specialist. However, I knew the news was bad because the doctor spent 45 minutes with me on the phone answering questions and discussing the “what ifs” of an IBC diagnosis. By the end of the week the answer came. A pathologist at Memorial Sloan Kettering Cancer Center looked at my slides and wrote a letter to my doctors which said in part, “. . . I do not think that there is much doubt that this patient has lymphangitic spread of an adenocarcinoma in the dermal lymph vessels, , , ,” Cancer in the dermal lymph vessels of the breast is the definition of inflammatory breast cancer.

Early May. I started treatment and was surprised to see the diagnosis at the bottom of the discharge sheet said “CA BREAST; Other specified.” Sometimes nausea was mentioned, but never inflammatory breast cancer. Why not? I asked. “There isn’t a specific diagnostic code for inflammatory breast cancer.”

For 27 years that letter, dated April 22, 1998, buried somewhere deep in my files has been the only official acknowledgment that I had IBC. I’m not counted in any official statistical data about the prevalence of IBC. My long-term survival is not part of a statistic that might give newly diagnosed patients hope.

For 27 years there has been no box on the family history list for me. I’ve had to write in “inflammatory breast cancer,” and those tiny boxes don’t have much space for long words! I can’t know for sure, but maybe some of the insurance claim denials I had to appeal wouldn’t have happened if my medical chart said inflammatory breast cancer.

Among the many reasons I am proud to be working with the Inflammatory Breast Cancer Research Foundation is the lobbying we have done to get us this code, or as it turns out out 3 codes—right, left, unspecified!

Now we will count and be counted!

by Phyllis Johnson