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Recurrence after Mastectomy, then positive margins

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Hello,

I am hoping to connect with people who might have a similar situation to mine, although I think (?) my situation might be on the rare side. Six years ago I was diagnosed with Stage 1B IDC. I am BRCA2. I did a double mastectomy with reconstruction (implants) and was told chemo/radiation not needed since my tumor was so small (5mm). Then this summer I felt a lump, same side on the underside of my foob (inframmatory fold). After scans, biopsy, etc. they said it was a local recurrence of IDC. Pet scan was clear. I had surgery last week to remove the tumor. Just found out that I have positive margins from that surgery. While typically this would require further surgery, the surgeon is saying he would not recommend surgery because it would be "incredibly dangerous" - a full chest wall resection where they would have to remove ribs, muscle and implant. He said I would be in the ICU and on a ventilator. Yikes! I still have not met with my oncologist yet but am very anxious about what the recommended treatment will be. Has anyone been in this situation or might have any experiences to share? I am ER+, PR (mildly pos), HER-. Grade 3, they are saying cancer is Stage 2. Margins involved are "Superior Multifocal, greatest continuous involvement in one focus 6mm).

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  • round2letsgo
    round2letsgo Member Posts: 2
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    Hi. My situation is similar with recurrence after mastectomy. DCIS in 2017 with double mastectomy. I found a lump on same side this past January and had lumpectomy on 2/21. Margins and lymph nodes were clear. HR+ & HER2-. I am waiting on oncotype test to see if I'll do chemo before radiation & tamoxifen. So not exactly like your situation — but just wanted to send support because this 2nd diagnosis has really thrown me. I thought with the mastectomy I was done with this.

  • starbridge
    starbridge Member Posts: 6
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    If you read Liz O'Riordan's blog, there are some similarities with your story. Her initial tumour was large with poor margins. Think they used radiation to treat the margins. She has had local recurrence x2 but these have also been successfully treated. She is a British breast surgeon (now retired) who got breast cancer. She is super sporty - triathlete, Iron man contests and now an inspiring speaker. She is also active on X/Twitter

  • cowgirl13
    cowgirl13 Member Posts: 778
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    I would definitely get a second opinion.