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12 years new recurrence/ILC


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.


  • moderators
    moderators Posts: 8,068
    edited July 2023

    We're so sorry you find yourself in this situation @newfmamainoregon. You are not alone at all. You may find more people in this forum (see attached). We're here to help in any way as you navigate all the decisions.

    Warmly, Your Mods

  • lillyishere
    lillyishere Member Posts: 773

    newfmamainoregon, so sorry to hear this. As ILC myself, I know this devil hides very well for many years to come. Bevjen was a member of this forum who had cases like this, ILC showed up every several years that were detected accidentally. The first one was in her uterus. I think that was discovered from a yearly check-up from her PCP. She said that anytime she went through a very stressful time, ILC got activated somewhere.

    Did you have any stressful event? The good thing is that once it is removed, one of the AI treatments can work great! Please let us know what you learn from your MO.

  • newfmamainoregon
    newfmamainoregon Member Posts: 5

    lilyishere, thank you. I did correlate stress with this recurrence. My husband was diagnosed with stage 4 melanoma almost 2 years ago. Long haul, plus the crazy pandemic which I’m sure stressed most of the population. I’m have surgery 8/1, then see MO 2 weeks later. I know he’ll push radiation which I’m not in favor of. I do plan on restarting AI. Take care.