HER2+ but not treated?

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Babsee02
Babsee02 Member Posts: 8
edited December 2014 in HER2+ (Positive) Breast Cancer

After moving out of state and finding a new onco, I was told I was HER2+, and was told I should have had Herceptin. I did not receive Herceptin after chemo (I was 2.8, and both new onco informed me that they treat anything over 2.0). That onco also tried me on Tamoxifen for a month, but stopped because of side effects. He didn't try any other medications (HER2+ ER+PR+). Any one else have this situation?

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  • Moderators
    Moderators Member Posts: 25,912
    edited December 2014

    Hi Babsee, and welcome to Breastcancer.org!

    Hopefully you get responses soon from other community members with their personal experiences and support but, in the meantime, you may find interesting to read the article Treatments for HER2 positive breast cancer from our main site, where you'll learn about some treatments available specifically for type of cancer.

    We hope this helps.

    The Mods

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  • leggo
    leggo Member Posts: 3,293
    edited December 2014

    Hi babsee and welcome. All I can think of is that maybe your initial treatment took place prior to Herceptin being protocol for your diagnosis. I know at one point it was reserved for advanced bc that failed other treatments. I'm not sure when it changed to be used for lower stages, but I do know that I wasn't offered Herceptin until after 2009. I'm just guessing, because I don't know your details, but could that be the reason? When were you treated? Protocols change so often. Hopefully someone with a lesser stage and knowledge of what protocol was at the particular time will chime in soon.

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  • Babsee02
    Babsee02 Member Posts: 8
    edited December 2014

    Thanks!! It was from last year. He did not see my FISH test, and ordered a Mammoprint instead, which was negative. I was diagnosed 12/12, chemo 2013 with nipple sparing mastect and reconstruction.

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  • leggo
    leggo Member Posts: 3,293
    edited December 2014

    I'm sure someone will be around soon that shares your diagnosis. I hope things work out with the new onc.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited December 2014

    Some docs only consider 3+ to be Her2+ and therefore responsive to Herceptin, and not all oncologists treat anything above 2, so it is possible that your initial MO did not feel that you were positive enough, particularly if your Mammaprint result was negative.  There has been a more recent move toward treating lower expressing Her2 and it seems that your new MO believes this is a valid approach.  Was your FISH positive or negative?  IHC is the testing modality that often gives a number score - did you have that done?  Here is the testing info from BCO:

    http://www.breastcancer.org/symptoms/diagnosis/her2

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited December 2014

    kayb - my understanding of IHC is that it is the more standardly done test (due to ease of use and cost) and if the result is equivocal, then FISH is done to corroborate.  My understanding of the scoring for IHC is that it is a numerical score, but written as 0, 1+ (from 1-1.9), 2+ (from 2-2.9), and 3+.  Some people get the number with a plus result, others get an actual numerical score.  FISH can be expressed as a score also, but is generally expressed as amplified (if greater than 2) or non-amplified (if less than 2), or as positive or negative and that is recorded on path reports.  Maybe some also get the numerical score also?  This info is also what is in the link I added from BCO.  I also had Mammaprint done and the result is a definitive positive or negative, but with a scoring that is unique to their process.  I am hoping that the OP's result was from an IHC and not a FISH, as that would be consistent with Mammoprint, and that her new MO just chooses to treat lower expressing Her2 patients.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited December 2014

    I agree with you - I also think there should have been another confirming test besides Mammaprint, since I don't believe that it is part of the normal Her2 confirmatory testing protocol.  Interestingly, it seems that both tests (IHC and FISH) can be expressed as a numerical score, but many path reports show a result for IHC as 1+, 2+, or 3+, and FISH as amplified (positive) or non-amplified (negative).  If the OP's test was a 2.8 FISH,  it should have shown as amplified - which I also find disturbing!  If it was a 2.8 IHC it is equivocal, and it looks like her old MO used the negative Mammaprint as the confirmatory.

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  • lkc
    lkc Member Posts: 1,203
    edited December 2014

    Hi Kay,

    If this was me I would Gather up all the med records and get another opinion. You Can request Herceptin, now after the fact.

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  • lkc
    lkc Member Posts: 1,203
    edited December 2014

    sorry I meant Basbee

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  • Babsee02
    Babsee02 Member Posts: 8
    edited December 2014

    note-- Thanks all! The FISH was amplified average count 2.6, ER and PR positive. According to the FDA, Herceptin can be used if equal or greater than 2.0 according to Clarient, whom did my testing. The Mammaprint showed ER pos, PR post, Her2 neg. Luminal profile, with HIgh Risk gene profile. My onco stated that he uses Mammaprint as diagnostic. WHen I reviewed the FISH results, he stated that it was "barely positive" and that he would not have treated me. There are no studies that have been done on women who have received Herceptin past 1 year after chemotherapy. My new onco does not feel it is safe to use at this point, since it can cause cardiac damage, and thinks the risks are greater as well (since it was not done prior). He also only had my on Tamoxifen for a 1 month. It was stopped due to side effects. He did not try to control side effects or any other medications. Also, he stated I was Stage 1, but surgeon disagreed and informed me stage 2. This was all done last year.

    Ki-67 was high.

    So-any other suggestions??



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  • lkc
    lkc Member Posts: 1,203
    edited December 2014

    wow, I don't agree with this, Babsee at all. I would definitely push for Herceptin. Herceptin can cause some reversible heart issues A drop in the ejection fraction. Pts have an echo at baseline to determine the EF. If in the normal range the pt on herceptin then has routine Echos every 3 mos, while on H. Most of us have not had problems with a drop in EF. If a pt's EF does drop the Herceptin is temp DCed until the EF comes back up.

    I don't know what you're doc is thinking.Do you have seroius heart issues?

    If not go with the FISH results and find another doc who follows the Standard of Care for a positive FISF result.

    Good luck.

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  • Babsee02
    Babsee02 Member Posts: 8
    edited December 2014

    I did call the manufact, and was informed I can take it at anytime, but my onco refused.

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