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Recurrence after 12 years (even with BMX)

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I was diagnosed and treated for ILC Stage 2b 12 years ago. Had BMX and took Tamox and AI for about 6 years. I was told 1-2% chance of recurrence in chest wall, etc. Low and behold, a lump under my arm on original BC side. Biopsy confirmed not a lymph node but ILC tumor. Surgeon planning to remove tumor and potentially do axillary disection if any suspicious nodes. Awaiting PET on 7/21 to determine if spread elsewhere then no surgery. I haven’t found many stories of this type of recurrence and am wondering if anyone has feedback. Thank you.

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  • lw422
    lw422 Member Posts: 1,399
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    Hello. Sorry to hear of your recurrence and hopefully it is confined to that single tumor. I have not had a similar experience but recurrence is always a possibility with freakin' cancer. Take care and let us know what you learn from the PET. Here's hoping that you get the best possible outcome.

  • newfmamainoregon
    newfmamainoregon Member Posts: 5
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    PET scan didn’t pick up the tumor so hard to know if there is any distant spread. The PET 12 years ago was the same, didn’t even see the cancer in breast, same with MRI.

    Surgery scheduled for Aug 1st. Hopefully no lymph node involvement. MO & surgeon recommending radiation which I may decline. Will restart AI.

  • moderators
    moderators Posts: 7,929
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    We're so sorry to hear this, @newfmamainoregon. We're thinking of all and hope your surgery goes well and your recovery is swift.

    The Mods

  • agapewins
    agapewins Member Posts: 4
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    Initial ILC 2005, 2 areas in same breast. Needed mastectomy but opted for bilateral mastectomy with immediate reconstruction. No chemo or radiation. EASY recovery thankfully! 5 years of various AI’s.

    17 years later ( 2022) diagnosed with recurrence in skin/ chest wall. 2 surgeries to get clean margins. Completed 1 month of radiation.

    So far so good but I opted out of AI’s this time since they gave me osteoporosis the first time around. I am receiving high dose IV vitamin C now.