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My reports all said IBC, pathology, core biopsies, Oncs report, etc,.I was on a UCLA study and got Herceptin from the beginning, I was stage 3b/4 because of skin mets. After I went off the study (a new tumour
emerged above the scar line from my left MRM in 6 weeks) and then I was definitely a stage 4 so I could continue Herceptin. My Onc said IBC is the misdiagnosed breast cancer, It speads like wildfire and mamos done as little as 1 or 2 months before can show nothing, especially if it is diffused. I had an itchy breast, sweeling, warmth at site. My primary care doc put me on antibiotics for a breast infection...that went on for a month until I was hospalized with pneumonia and insisted on a CAT scan which showed my lymph nodes light up. I don't know how much longer that could have gone on (at the hospital, they also said it was a breast infection and were treating it with warm compresses) I had to insist on that CAT scan that probably saved my life. I had a 7-9cm tumour and 6 of 19 lymphs removed were positive at surgery. I was NED, clean margins, etc. But as I said there was a new tumour just weeks later. I have learned to do alot of pro active work on my own and suggest that everyone get 2 or more opinions everytime they star chemo or their chemo is being changed. It can make a huge difference. Love, Vickie
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