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A small update on my IBC diagnosis journey & questions

aflowerfield Member Posts: 11
edited April 2023 in Not Diagnosed But Worried

Hi everyone. I am 36F with IBC symptoms in my left breast (skin thickening and widespread discoloration following popping what looked like a cyst). My punch biopsy results read “chronic granulamtous inflammation.” The IBC Network and MD Anderson both say that because the disease tends to spread like nests/webbing throughout the breast, biopsies often miss it, and a negative biopsy does not rule it out. I saw a breast oncology APRN told me that because my skin thickening was very focal a single pinpointed punch biopsy was appropriate but I’m not sure, as I still have an enlarged left breast & swelling. (The nurse told me this makes sense for what she and the breast surgeon I saw both believe is an infection.)

Now I am also scared because I have a single dark red spot on my nipple—the bottom part of my nipple— on my other breast, the right one. It’s flat so it’s not a pimple, almost looks dimple due to the discoloration, and the skin feels taut/shiny/thickened. I am aware that IBC can start with something that just looks like a little pimple and I am scared I am presenting with IBC in my other breast. Unsure of what to make of all this, I hope it is okay to post here again— I know my anxiety is palpable, I just don’t know how to navigate all of this.