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Feb 27, 2019 10:53AM
Feb 27, 2019 11:02AM
Paget's can only be diagnosed with a biopsy. Clear mammos and ultrasounds don't mean anything.
An MRI was the only diagnostic that showed it - it lighted up in that area. They'll usually start you with a biopsy - it's cheaper, easier to do, and more conclusive.
My Paget's started with some light crusting at the center of the nip - almost like dry skin cells. I'd scrape them away. Then I noticed a little injury to the side with oozing (I thought I must have scraped it on my watch or something). That healed, and I thought it must have been nothing. Then I thought I noticed the nip receeding, but couldn't be sure. Then there was a red itchy spot. All this happened over the course of a few years. Then it sped up - the red spot grew, over the course of several months, to double the size (about the size of a dime). The skin was pink-to-reddish, had a distinctive edge. I went to the dermatologist and was visually diagnosed with eczema and given creams. Over the course of the next year, the spot doubled in size again, now covering almost the entire areola. Seemed like nip was receeding even more. I went back to the dermatologist who did a punch biopsy. Paget's. Even the cancer doctors that looked at it said it "didn't look bad" - it was just a pinkish-to-red itchy patch, slightly shinier than my normal skin; but the pathology said there was extensive Paget's disease. So there was no bleeding or pus, as you see in some cases, just an eczema-like rash. It wasn't peeling or scaly (as my dermatologist said she usually sees these cases), it was more shiny pink with a defined edge, and occasionally looked reddish at times. In my case, all the symptoms appeared only on one side. Cortisone did not make it feel better - any creams or lotions just made it more itchy. Itchiness, pin-prick sensations, pink/red skin with defined borders, and nip receeding more were my main clues.
Diagnosed at 42. Had symptoms of Paget's for years prior to positive biopsy. No Tamox because low% ER.
11/2/2018, Paget's, Right, Stage 0, Grade 3, ER-/PR-, HER2+ (IHC)
11/10/2018 Lumpectomy: Right
11/29/2018, DCIS/Paget's, Right, 1cm, Stage 0, Grade 3, ER-/PR-
12/18/2018 Lumpectomy: Right; Lymph node removal: Sentinel
12/21/2018, DCIS, Right, 2cm, Stage 0, Grade 3, 0/2 nodes, ER-/PR-
1/15/2019 Mastectomy: Right