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Sep 25, 2021 12:37PM
I'm sorry you are here, but as you can see, you have a lot of company. I was diagnosed with DCIS in my left breast, grade 3, comedo necrosis, ER-/PR-. MRI showed possible lymph node involvement as well as possibly something else in the left breast. My surgeon recommended mastectomy and left the decision about the right breast to me. The surgeon I saw for a second opinion recommended lumpectomy at first, but after seeing my MRI, also recommended mastectomy. The first surgeon I saw (who did my surgery) said that with ER-/PR-, there aren't as many tools in the toolbox if there is a recurrence.
I followed the recommendations and elected to have both breasts removed with immediate reconstruction. There was no lymph node involvement. I do not recall anyone telling me that there was a possibility they could remove my entire breast for a relatively small area of DCIS and still not have good margins. (If I had done more reading, I would have discovered this myself, so I'm not blaming anyone). I had a close margin near the skin, and elected to have a re-excision rather than radiation. My reconstruction went very well and I am quite pleased with the way it looks.
Because of my close margin, I am having annual mammograms for five years. We are hopeful that if there is a recurrence, we will be able to catch it earlier this way. My understanding is that because of my ER-/PR- status, a recurrence, if it happens, is most likely within that time frame. Although most people with mastectomies do not have mammograms, there is no reason why they can't. At my last mammogram, the surgeon noticed something she is watching and I will have a four-month follow-up.
The only thing I might do differently is consider radiation rather than re-excision for the close margin. I did not want radiation and although I think that the slight healing issues I had on the re-excised breast would have been exacerbated by radiation, I think radiation may have given me more protection from recurrence.
Re-excision for close anterior margin 10 days after BMX.
10/31/2018, DCIS, Left, Stage 0, Grade 3, ER-/PR-
12/10/2018, DCIS, Left, 2cm, Stage 0, Grade 3, 0/3 nodes, ER-/PR-
12/10/2018 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Latissimus dorsi flap; Reconstruction (right): Latissimus dorsi flap
9/13/2019 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant