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Nov 4, 2017 04:38PM
IBC hit me hard and fast. I started with a small rash along the top edge of my bra. We had an unusually humid summer, so I thought it was just a sweat rash. A few weeks later I woke up and my right breast was rock hard, swollen to twice it's normal size, my skin was so hot that it felt like it was on fire, orange peel bumps, lymph nodes under my arm and above my collar bone were swollen, and what looked like a large purple bruise covering almost the entire right side of my torso. It was the Friday of a long holiday weekend. I i wish I had gone to the emergency room. By the time I saw a doctor the following Tuesday, the bumps on my breast had started oozing and lumps were developing in my left breast. I was told to check myself into the hospital immediately.
The tumor continued to grow at an incredible rate while I was in the hospital and they were running tests, scans, biopsies, etc. to try to figure it out and how to treat it (and save my life because I went downhill fast). The open wound on my breast was the most terrifying because I could see it grow every day. Within days the tumor grew into the brachial nerves of my right arm. I started losing mobility in that arm, and any time I tried to use it, it would swell. I was told that I might never regain full use of it again if we couldn't prevent further nerve damage. I was also in incredible pain.
The second CAT scan done right before I was discharged showed suspicious spots on my liver. My MO recommended a PET scan to confirm. The spots were still too small to confirm (and too small to biopsy), but the PET scan showed mets throughout my bones, including my spine, even though a bone scan done a few days earlier showed nothing. I started chemo the next day.
IBC Stage IV de novo - presented in right breast, within days spread into left breast, skin, chest wall, metastasized into brachial plexus (lost complete use of right arm for several months), liver and throughout skeleton.
9/8/2017, IBC, Both breasts, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+
9/26/2017 Taxol (paclitaxel)
2/6/2018 Perjeta (pertuzumab)
2/6/2018 Herceptin (trastuzumab)