Her2+ at bioposy, Her2- at surgery - IDC/ DCIS combo?

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Admo
Admo Member Posts: 7
edited October 2016 in HER2+ (Positive) Breast Cancer

I was diagnosed in August 2016 with triple positive IDC.  The first HER2 test was equivocal but with FISH, I was determined to be HER2+.  I had lumpectomy and breast reduction (oncoplasty) on September 19th.  The tumor was about 1cm with clean margins and no lymph node involvement.  Post-surgery pathology showed me to be ER+/PR+ and HER2 equivocal.  Post surgery FISH test came back a few days ago and showed me to be HER2 negative.  My oncologist suggested I should still have chemo and Herceptin to be safe but yesterday, we got a new wrinkle that the pathologist thinks the HER2+ portion of my tumor is a non-invasive cancer and the HER2- portion is invasive.  Apparently, Her2+ is more common and not a concern if it's in non-invasive cancers. They are testing more of my tumor right now but I'm now filled with hope that I may not need chemo.  I'm wondering if anyone here has had a similar experience?   Thanks!

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  • meg2016
    meg2016 Member Posts: 287
    edited October 2016

    Not quite the same, but some similarities. In my case, I already had lymph node involvement at diagnosis and so I had chemo before surgery. But I did have Her2+ with FISH from my biopsy, then I had a second opinion on my pathology and it came back Her 2- (from a different sample). My oncologist said multi-expressive tumors are quite common, since they take a small sample for testing, they might get one or the other when you have both. she said if its multi-expressive, she recommended we err on the side of doing the herceptin (and I was getting chemo anyway, so I just got it with my chemo.) You can get a second opinion on pathology (and you typically don't have to go there- just send your samples somewhere) if you have any doubt after they look at it further. After surgery, my remaining tumor was Her2 neutral, she thinks its probably that the her2+ parts were wiped out with the chemo/herceptin treatment. Mine was all IDC, though, at least after surgery.

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  • Admo
    Admo Member Posts: 7
    edited October 2016

    Thanks so much meg2016. It will be a welcomed miracle if I don't need chemo -- but I'm afraid to skip chemo unless they are 100% sure I'm not Her2+. A nurse emailed me on Friday that they are now doing oncotype testing, but I don't know if that means I'm no longer considered her2+, I think I'll need to wait for my next appointment with my oncologist to find that out.

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