Anyone here Her2 positive change to triple negative?

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Roro711
Roro711 Member Posts: 4
edited July 2021 in Just Diagnosed With a Recurrence or Metastasis

I was originally Her2 positive and treated with AC and Taxol, plus Herceptin and Perjeta. I had a left mastectomy and direct to implant in December 2020 and then started on Kadcyla. My postop biopsy of the remaining tumor showed I did not have PCR and it had changed to Triple Negative (TNBC). I had clear margins.

In March 2021, I noticed several lumps in my reconstructed breast. The cancer returned. My oncologist is not sure if it’s recurrence or residual. Biopsy showed IDC and it was TNBC.

My question is - did anyone have her2+ which changed to TNBC after chemo? If so, did your treatment plan change after surgery (I.e. more chemo or radiation)?

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  • Docy
    Docy Member Posts: 42
    edited June 2021

    Hi Roro,

    Sorry to hear your story.I have not seen any reply for your post.

    How are you doing. What did your doctors decided to treat you with.

    I have very weakly positive HER2 and get worried.

    Good luck. Stay brave

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  • naps
    naps Member Posts: 61
    edited June 2021

    Hi,

    I was initially HER2+/hormone receptor neg. After neoadjuvant chemo with TCHP, the residual was TN. After a 2nd and 3rd opinion, I ended up getting 4 more cycles of adjuvant chemo with AC (not part of the original plan) and then proceeded to get radiation (which was planned from the beginning). Also finished up the full course of Herceptin.

    Best wishes. Take care.

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  • Roro711
    Roro711 Member Posts: 4
    edited June 2021

    Thank you Warrior! I also initially had weakly positive her2, confirmed with FISH test. My treatment plan changed to Carboplatin/Gemzar. Took me off Kadcyla. Taking it day by day and adjusting to my new diagnosis. Likely will have to be on some treatment long term with TNBC.

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  • Roro711
    Roro711 Member Posts: 4
    edited June 2021

    thank you for replying! My oncologist decided to put me on Carboplatin/Gemzar because I initially was on AC/Taxol before surgery. They stopped Kadcyla.

    TNBC is scary. Hope all is well with you now!

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  • AmyQ
    AmyQ Member Posts: 2,182
    edited June 2021

    Roro711

    Although I was originally HER2 - I did change to TNBC sometime in the past few years, from ER/PR + That's not the scary part...I had an anaphylactic response to Carboplatin. Now THAT'S scary. Required a weekend stay in the hospital.

    Obviously no more Carboplatin. Everyone is different and I'm finding there to be new treatments that weren't available before so that's good.

    Good luck -

    AmyQ

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  • Hahlyn
    Hahlyn Member Posts: 179
    edited June 2021

    Hello

    2016 I was HER 2 + after TCHP no PCR I had residual cancer left a small tumor that was found hiding after my lumpectomy in Feb 2017 and it tested and came back as TN. I then had to have additona chemo AC 4 cycles completed in June 2017.

    In 2020 I had recurrence calcification 5mm just finished TC 4 cycles yesterday June 17. The calcification was TN too.

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  • faroutstar
    faroutstar Member Posts: 12
    edited June 2021

    Does anyone know how common this is to originally be HER2+ and return as TN?

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  • KBeee
    KBeee Member Posts: 5,109
    edited July 2021

    I don't know how common it is, but do know if it happening. A local gal that had it happen, said her doctor explained it that the first time around, the targeted therapies killed 100% of the HER2+ cancer cells, but a couple that were not HER2+ remained (Usually cancer is a mix of different types). The remaining ones multiplied and became the new tumor. I hope that makes sense.

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  • moth
    moth Member Posts: 4,800
    edited July 2021

    There have been several studies investigating changes in hormone markers. They found slightly different resutls:

    " (6.56%) patients had HER2-negative primary tumors but HER2-positive metastases, and 22 of 503 (4.37%) had HER2-positive primary tumors but HER2-negative metastases" (Meng et al 2016 Receptor conversion in metastatic breast cancer: a prognosticator of survival https://www.ncbi.nlm.nih.gov/pmc/articles/PMC53421... )

    This study looked specifically at progressions & reports from a meta analysis: "Schrijver et al. [] reported in their meta-analysis that the pooled percentage of positive to negative conversion in ER, PR, and HER2 was 22.5%, 49.4%, and 21.3%, respectively. Conversely, the percentage of negative to positive conversion was 21.5%, 15.9%, and 9.5%." (Woo et all 2019 Changes in biomarker status in breast cancer and their prognostic value https://www.ncbi.nlm.nih.gov/pmc/articles/PMC67693... )

    It seems it's not the majority of cases but it is not completely unusual. Loss of markers seems more common than gain of markers.

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