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HER2- BT and HER2+ LN: Anomaly. Who knows anything about this?

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stellamara
stellamara Member Posts: 1

How can I have both a HER- BT (breast tumor) rated “Equivocal” and a HER2+ LN (lymph node) at 50% positive?

If the assumption in current cancer medicine (2023) is that breast cancer begins in the breast and spreads to the lymph node as I’m told is the case; how is it possible to have the above diagnosis? I’ve been told that it very rarely happens and the cause is unknown.

I want to find out all I can and feel frustrated at the lack of information out there for me and even my two highly-respected Oncologists with major research connections! There must be someone looking into and or experienced with patients like me!

Who are you and how do I find you?

A recent repeat testing as part of a consult confirmed the unexpected diagnosis. I went from Stage 1a Grade 1 BC Dx to a Grade 2, 6 months after an initial biopsy report from both areas and from a no Chemo recommendation to Taxol Chemo with Phesgo Antibody treatments.

A laboratory failed to send my surgical biopsy slides to the Consult until a month later than requested. Having been told my cancer was easily curable without having to undergo chemo since January 2023 and relying on that information, even after speaking with the consulting Oncologist in late April 2023 who assured me it was likely an “over-read” of staining on the cells, was shocking to say the least.

I began chemo and antibody treatment today, May 10, 2023.

Please let me know any information you have regarding this strange and confusing anomaly which has caused me to be need to have chemotherapy.

Gratefully,
Stella

5/10/23

Comments

  • moderators
    moderators Posts: 7,915
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    Welcome, stellamara. We're so sorry you find yourself here! We understand how shocking this is, and we're here to support you.

    We found a paper on NIH/PUBMED that discusses the prevalence of internodal hetereogeneity that we wanted to share with you, and perhaps you'd want to discuss with your doctor. It appears to be quite rare, but is an important consideration in determining targeted therapies for the patient.

    The Mods

  • maggie15
    maggie15 Member Posts: 859
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    stellamara, With a breast tumor that is HER2 equivocal a FISH test is usually done to see whether it is actually positive or negative. It might not have been ordered in your case since the lymph node showed Her2+ and you would need chemo for that anyhow. This is a good question to ask your doctor.

    It's a shock when your treatment changes. The small hospital where my biopsy was done missed some things on my slide when a reread was ordered by my oncologist at the large hospital after my surgery. It's not surprising since a pathologist who only looks at breast cancer cells is going to be more of an expert than one who does everything.

    I've been thrown a few curve balls during my treatment; sometimes things are not straightforward or you just happen to be one of the "lucky" few who experience something that hardly ever happens. When I ended up with a rare treatment side effect the doctor whom I was referred to told me (a math teacher) a story. His 10 year old daughter came home from school and told him, "Math is magic! You can use it to solve all kinds of problems!" I laughed and he then said, "Math is magic, medicine is not." That's my mantra now whenever I have a setback.

    I hope you get through chemo OK and don't get any more surprises along the way.

  • moderators
    moderators Posts: 7,915
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    @stellamara We are thinking of you! Do you have any updates?

    Also, you may want to start the May 2023 chemo discussion (similar to April 2023) to gain some support from others during treatment. In addition, we offer an In Treatment Zoom Meetup you might be interested in to talk to others about what's going on.

    We hope this helps!

    —The Mods