HER-2 status

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Sjackson12
Sjackson12 Member Posts: 1
edited June 2020 in Diagnosed and Waiting for Test Results

Hi all. My mom was just recently diagnosed with lobular carcinoma after many bouts of calcifications and biopsies dating back for years! We always knew this was a possibility, but it’s a scary journey to considering venturing down. I am trying to be a support system for both my mom and my dad (who seems to be struggling with this more than my mom!)

She went to see her oncologist today and was told the tumor is around 3cm. An MRI is being scheduled to get a better grasp. We do know she is estrogen AND progesterone positive. They still do not have the results back for the HER2 test. I believe the words they used was that it was inconclusive? They are running another test and they should know the results in a week. They stressed that it was very important that this test is negative. Has anyone had an inconclusive test result that ended up being negative? Or does inconclusive tend to be not a good sign? Thanks for any and all help!


Stacey

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  • Beesie
    Beesie Member Posts: 12,240
    edited February 2020

    The IHC test is cheaper and quicker, but it has a very large middle "equivocal" category. The FISH test is more expensive and more precise.

    As a result, most often the IHC test is done first, and then if the results are equivocal, the sample is sent for FISH testing. It is very common for equivocal IHC HER2 tests to come back negative on the FISH test.

    If you look at the signature lines of members here, you'll see quite a few that say "HER2- (FISH)".

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  • Gknapp
    Gknapp Member Posts: 1
    edited April 2020

    I was diagnosed HER2 positive after fish test but that being said my result markers were barely over the line. I am now having a test called Blueprint in conjunction with Mammaprint test done for further clarity.

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  • mtspacekace
    mtspacekace Member Posts: 157
    edited June 2020

    I am 38, no known family history, we have no children...recently diagnosed, tumor A <2 cm, ER/PR-, HER2+... tumor B >2 cm, ER/PR-, HER2 unknown...so they are sending it to Mayo for FISH.

    While waiting for FISH, I’ll be having a port put in on the 30th.

    We are not going to be able to preserve any eggs or embryos because of the timing, and I would have to travel to Salt Lake to get that done...at this time we just feel that taking care of the cancer is more important than preserving fertility.

    I have done genetic testing...waiting on results...

    Echocardiogram says my heart is normal...(my husband was surprised I even had one ;) )

    Any advice on what I should prepare for? I do know the plan is chemo (probably every 3 weeks for 6x...if tumor B is HER2+, or every week for 10x if neg) mastectomy, radiation and therapy... What are good items to have for chemo??? I’ve read a few forums, but what is your most necessary items? They told me to plan on losing hair...I’m ok with that. It’s a lot to process.

    Hoping and praying that I respond well to chemo and treatments and this isn’t something genetic that puts me at a higher risk for more cancer in the future.


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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited June 2020

    MtSpace - sorry you've had to join us. I had TCHP every 3 weeks x 6 before surgery. Even if only one tumor is HER2+, I would think the treatment would include those protocols.

    There are several good HER2+ threads. Below is a pretty comprehensive discussion of items to consider for chemo.

    https://community.breastcancer.org/forum/69/topics...


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