Retesting of HER2 results?

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wallycat
wallycat Member Posts: 3,227
edited June 2014 in HER2+ (Positive) Breast Cancer
My husband just read in the Economist magazine that a small amount of HER2 negative were false negative and when retested showed positive.
May I ask if any of you showed positive upon re-test or were positive right out the gate?

I'm a bit spooked at this.
Thank you all.
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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited March 2008
    Hi WallyCat,

    Both FISH and IHC HER2 testing can have quality control issues resulting in false negatives, which upon retesting may be positive. Here is a link to the NCCN patient guidelines on this issue.

    http://www.nccn.org/patients/fact_sheet.asp

    It is incumbent upon each hospital's lab (or reference lab to whom samples are sent) and oncologist to ensure quality in performance of this tremendously important test so they can speak authoritatively and reassuringly to each patient. This issue has not been a large problem from what I understand, but has arisen on occasion and been discussed in the medical community, especially with interpretation of borderline test results and perhaps with smaller or less experienced labs or not sending tests to large reference labs. Some of this is explained in the link. It's never to late to talk with your oncologist if you have specific concerns.

    Hope this helps in some way to reassure. Time is passing until the forum is down for a day, so I took license to post even though I am not HER2 positive. Hope you do not object.
    Tender
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  • wallycat
    wallycat Member Posts: 3,227
    edited September 2007
    Tender,
    bless your heart for responding.
    I would NEVER object to anyone stating their 2cents!!!
    I will look at the link.
    The odds are I am also not a false negative, but the whole cancer thing has me spooked so I am cautious on every front.

    Thank you, Tender!
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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited September 2007
    I had 7 diff,. biopsy in 19mths they are always checking to see if my Her2 status has changed because I don't response to chemos and still have new chest tumors popping up. You can also have two kinds of bc at the same time. Yuck!

    Living in hope.
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  • CTG
    CTG Member Posts: 143
    edited September 2007

    I am Her2+ and had both the IHC and the FISH pathology tests. The IHC was not conclusive and had to be re run. According to the FISH pathology results I am clearly Her2+ with over amplification of over 10. I was told by my oncologist the most definitive test for Her 2 onco gene is the FISH test. We have spoke at length about leading laboratories and the experts of pathology. There are well known labs that oncologists can send out for a retest of pathology.

    It is common when treating advanced cancer that receptor status is re examined. This insures the proper course of treatment is selected.

    I would suggest if you are nervous go ahead and retest your status. Pathology departments keep a cassette of your original biopsy in wax for about 10 years, you can ask for your glass slides to be sent to a major cancer center for a retest.

    CTG
    dx fall05 stage4 liver and bone mets
    dx fall06 brain mets / spring07 brain mets gone
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  • wallycat
    wallycat Member Posts: 3,227
    edited September 2007

    Thanks gals.

    I met with Oncologist on Friday.  He said that because my ICH result was ZERO (0), he felt there was no room for error.

    I guess I can second guess every step of this and there will come a point I have to just let it go and hope for the best.

     I appreciate all your inputs!

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  • Bimmer
    Bimmer Member Posts: 248
    edited September 2007

    Yesterday we were without much hope. Until the Onc asked if they could have Diane's permission to go back to her pathology slide from 2 years ago and recheck it for her2.

    They did not even have to tetest the slide. The results were there. She is ER-,PR-, and her2 is either now positive or not all the way negative. But she starts taking Herceptin on Friday. There is now hope that the herceptin will spark a response.

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  • sue4unj
    sue4unj Member Posts: 69
    edited September 2007

    I had the FISH test and it came back questionable, so I had the Oncotype DX and that showed a score of 36 -- VERY HIGH chance of reoccurance and spread.  I'm glad I had that test done because it determined my treatment.  Since I was Stage 1, Grade 2, no lymph node involvement, clear margins, etc. my treatment would definitely have not been so intense.

    Sue

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