HER2 Borderline

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Tom1981
Tom1981 Member Posts: 52
edited February 2017 in Stage III Breast Cancer

Question....my wife was originally tested as HER2-. Switching to a new hospital it came back as borderline so they did a FISH test that came back as negative. Should we be concerned about this? Is HER2 just basically a positive or negative type situation? Not percentages like with the other receptors?

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  • SSInUK
    SSInUK Member Posts: 245
    edited February 2017

    hey there - I think I posted to you before as I have many similarities in my diagnosis as your wife. Same thing happened to me - I tested as borderline Her2- positive then borderline hen negative by FSH. My Onc had lots of discussions with the pathologist about it and they said to me that tumours are not heterogenous; in other words every time they retest a different bit of tissue in a borderline case they may get a different answer. On that basis they gave me the 'benefit of the doubt' and gave me herceptin (trastuzamab). However I wasn't eligible for Perjeta which was then a clinical trial. There are differences of opinion as to whether herceptin benefits low Her2 expressing tumours but some think it does on the basis that stem cells which form mets may be the Her2 driven cells even in tunours deemed generally Her2 negative. So I was glad to get Herceptin. One warning - it made me ineligible for PAllaS which is n excellent trial you should look into - Ibrance may be a more powerful and relevant treatment than Herceptin for any cancer strongly ER positive. Do you know the ER/PR score?

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  • Tom1981
    Tom1981 Member Posts: 52
    edited February 2017

    Yes they want to get her in the trials. The thing I don't like is 50/50 chance of her getting the medicine. She is mid to high 90s on ER PR. This has all been such a headache. Every turn it seems as though a surprise pops up. I'm sick of surprises. No one ever said positive. It went negative then borderline then negative. I just want to use every tool we can but also I want to use the best tools possible.

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  • SSInUK
    SSInUK Member Posts: 245
    edited February 2017

    I'm sorry. I do know just how that feels. If it was me personally I'd do the trial over Herceptin. I grabbed Herceptin but now regret no access to ibrance.Her ER/PR is high as mine was. My Onc said his feeling was that I had much more a hormone fuelled cancer than HER2-. I did a lot of research -- low Her2 strong ER/PR cancers are much closer to luminal in outcomes and behaviour. Generally that's a positive though of course we all of us are at risk. Her high PR is also a positive sign too. Hold on to those as reasons for hopefulness. It's so scary for you both. Sorry.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited February 2017

    SS - I'm the opposite. I grabbed on to the Herceptin and am sooooo glad I did. Yes, I was borderline, HER2+, but my docs never argued about giving Herceptin & Perjeta. Since I am hormone negative, there aren't a lot of other options. It was a tool in the box that might help.

    Tom - please check back & let us know what you decide.

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  • SSInUK
    SSInUK Member Posts: 245
    edited February 2017

    I can totally see that, makes sense - you had something to aim at. Really good you had that weapon, If you're strongly hormone positive though it may well be that Ibrance wins. It could prove to be almost like the Herceptin for HR+ tumours - its touted as the biggest thing in 10 yrs, it would be amazing. Good luck Minus Two I can see you've really been through the mill

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