HER2 LOW --Anyone else classified as this??

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klcnp1
klcnp1 Member Posts: 12
edited December 2016 in HER2+ (Positive) Breast Cancer

I have been recently diagnosed with a perplexing case of breast cancer, I am stage 1A, Mucinous Colloid Cancer that is Grade II, invasive ductal cancer, ER+/PR+, HER2 LOW (that's the real issues...some of the tumor was negative and some low + but not enough to call me HER2+), tumor was 1.7 cm in left breast only, and Oncotype Reoccurrence score 25 and Mammoprint High Risk (-0.132) with blueprint Luminal type.

My HER2 testing on biopsy was equivocal. My HER2 testing on tumor was equivocal via ICH and FISH thus sent Hi Resolution HER 2 in which pathologist called it HER2 low (not enough to call me a HER+) so we sent Oncotype and it showed me again in the middle zone with score of 25, after much discussion we sent Mammoprint which shows barely in high risk zone.

So as not to wait anylonger with confusing lab results, they are starting radiation. They don't want me to wait anylonger to start some type of treatment.

With the Mammoprint coming back as high risk yesterday, they want to add chemo but they aren't sure how to treat with me being Stage 1. They don't think I need the entire ACT tx, and don't know whether or not to treat me with Herceptin. Chemo may reduce absolute risk by 2% so I am not sure if the benefits of chemo will out weight the risks for only a 2% reduction rate as I am sitting at 11-12% reoccurrence rate now.

Has anyone else been diagnosed as HER2 LOW...if so, what was your situation and treatment plan if you care to share.

Thanks.

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited December 2016

    Hi klcnp1:

    This seems like a relatively uncommon situation, the type which may warrant a second opinion review, including a review of all pathology and HER2-test results to date, as well as all imaging results and treatment recommendations.

    If feasible, an NCI-designated cancer center (confirm insurance coverage and in-network) may be a good option:

    https://www.cancer.gov/research/nci-role/cancer-centers/find

    Best,

    BarredOwl

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  • bevin
    bevin Member Posts: 1,902
    edited December 2016

    HI there , I had a her2, Low, or Her2 +1

    I was offered chemo, not offered Herceptin and ultimately went w no chemo only rads + hormone suppression after lumpectomy given my low oncotype. So far I am fine.  Its hard to decide what to do. If you are uncertain with your doctors advice its also  possible to get a second opinion if you're uncertain. I received 3.

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  • klcnp1
    klcnp1 Member Posts: 12
    edited December 2016

    Thanks @bevin. I initially was offered radiation + hormone or chemo (taxol only) + herceptin + hormone...chose radiation then mammoprint came back that muddied the water....! I am seeking another opinion, but it will be just that....an opinion because, science doesn't know how to treat me as I fall in the middle waters on all except mammoprint. Mammoprint such a new test, not sure I want to put all my eggs in that basket knowing all the rest of my results

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  • Mabs
    Mabs Member Posts: 36
    edited December 2016

    Hello,

    the oncotype test also came with the results of her2 status. Do you have your report or only the score? What does it says?

    Mine was equivocal, then fish came back negative and oncotype confirmed negative..

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  • klcnp1
    klcnp1 Member Posts: 12
    edited December 2016

    @mabs Yes I have the report and score...It shows Oncotype Score 25 and it shows Her2 10.4 = negative...Because it put me in the middle for Oncotype score, we sent Mammoprint came back High risk with blueprint showing Luminal Type +0.672, Her2 type -0.436 and Basal-type -0.619.

    So basically a HER2-low.


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