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Jan 17, 2013 05:14PM
Jan 17, 2013 05:19PM
Hi Everyone, I am so glad that this thread has been started! I was diagnosed (had a biopsy) 11/12/12 and didn't find anyone else at the time that could share their experience. As you all know, there isn't very much information out there about Paget's.
My trouble started early last summer when my left breast and areola developed an ulcerated rash with serous drainage from the nipple. I work outside and thought it was from the heat and my sportsbra. (Never stopped to wonder why the other nipple wasn't affected!) The other thing was that my breast HURT, not just the nipple, it became uncomfortable and I found that I had to wear a bra all the time. The nipple was kind of clearing up when I went for my mammogram in October, but the tech told me that I should see my GYN as soon as possible to figure out what was going on. My GYN took one look at it and sent me to the surgeon for a biopsy. When I saw the surgeon, he said that it looked pretty suspect and so I was scheduled for a biopsy. The options presented to me were lumpectomy and radiation, or mastectomy.
I opted for mastectomy so I would not have to worry about whatever other cancer might be lurking. Plus, the lumpectomy was going to take a big hunk out of the center of my breast. I knew I wanted to start reconstruction at the time of the mastectomy, so I had to identify a plastic surgeon. Fortunately, for me anyway, I have a good friend who had BMX about a year ago. She has been incredible about providing information and support. She encouraged me to talk to a couple plastic surgeons to learn more about the process and my options, and to make sure I found someone I liked since I'd be seeing alot of them.
I interviewed three plastic surgeons. During the first interview I asked what would have to be done to the "healthy" breast to match the new one. Turns out, quite a bit, and there would probably be multiple times that it would have to be tweaked. Changes in my weight, age, tissue, etc over time would change it. I'm pretty OCD about things being symmetrical, so I quickly changed my mind to have both breasts removed. I also learned from another friend who had had one breast removed in her late 20's, that in the past 17 years she has had 8 proceedures on the healthy breast.
I had my BMX and TE expansion on 12/07/12. It turns out that my left breast also had DCIS. Two nodes were removed, and they were both negative. I developed seromas over Christmas, they were drained but the right breast continued to have problems so I went back to surgery on 01/02 to have the right side re-done.
I have not had a single regret about having both breasts removed, although it has been weird to look at my new shape. Of course, during the tissue expansion process the shape has continued to change...
I will see a medical oncologist at the end of the month. I do not expect that she will have anything else for me to do. Hormone therapy is contra-indicated for me due to a genetic thrombophilia, plus the pathology report said everything was ER- and PR -. I do not know the Her2 result yet.
There is no history of breast cancer in my family, and I never had a lump or mass. Nothing on mammogram, ultrasound and no lump on MRI. I have been conducting my own little public service annoucements about breast cancer not always being a lump!
My good news for today is that I had my last expansion session. I plan to wait until this summer to have the expanders swapped out for implants. I never, in my wildest dreams, ever thought I'd know so much about boob jobs
12/7/2012, DCIS, 0/2 nodes, ER-/PR-
12/7/2012 Mastectomy: Left; Prophylactic mastectomy: Right
12/7/2012 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
1/2/2013 Reconstruction (right): Tissue expander placement