IBC is not a common diagnosis for women, but almost unheard of in men. Five years ago, after feeling a lump, I was diagnosed with Invasive Ductal Carcinoma with dermal lymphatic invasion, Stage IIIB, Grade 2, ER+/PR+, HER2-, and referred to a breast surgeon. On examining my inflamed and enlarged left breast, with its inverted nipple, the surgeon determined an IBC diagnosis and an inability to operated on the left breast in that condition. She sent me to the oncologist to start neo-adjuvant treatment, where chemo precedes surgery.
The oncologist was keen to get my chemotherapy started immediately. Chemo lasted 18 weeks, and was one day each three weeks. There were three lots of FEC (Fluorouracil, Ellence, and Cytoxan) and three of Docetaxol. I have to say, that chemo went very well for me and I tolerated the drugs without the various dreaded side effects.
The Surgery that followed was extensive, since 2/23 lymph nodes tested positive, all those under my arm were removed along with the breast tissue. Pathology following surgery showed the tumors to be still active, so pCR was not achieved. I was lucky to have a very skillful surgeon, and she was amused when I asked if there was any reconstruction? While it is possible to rebuild a facsimile of a guy’s breast, she explained, the lack of extra material makes it harder and actually inhibits the surgeon who really has to work hard to round up the affected tissue, since cancer often travels further in male breasts.
Following chemo, I started 25 radiation treatments, five a week for five weeks. Again, this was more of an inconvenience than a bad experience, and I understood that this treatment was “insurance” in that it was aimed at rounding up cancer cells in my skin and in the chest wall.
I have been taking the hormone blocker Tamoxifen for the past five years, with little apparent side effects. Three years ago I has diagnosed with prostate cancer and the treatment, much simpler than for breast cancer, consisted of a robotic prostatectomy.
I have tested positive for the BRCA1 mutation, but the result was a variation of unknown significance. Breast cancer and prostate cancer often go together in men, like breast and ovarian cancer in women.
I’ve been fortunate to have my patient advocacy efforts recognized and last year was invited to the Project LEAD course in San Diego. In December this year I gained a patient advocate scholarship to attend SABCS, the world’s premier breast cancer conference, in San Antonio.
I’ve yet to meet a man with an IBC diagnosis, and figure that, since it’s a clinical diagnosis, and since men are very often misdiagnosed anyway, it’s likely more men have this type of breast cancer but it’s unrecorded. I’m certainly grateful that I received such timely and appropriate treatment. As my oncologist once quipped, we threw the kitchen sink at it.