After chemo and surgery, found out I am Her2!

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sweetbean
sweetbean Member Posts: 1,931
edited June 2014 in HER2+ (Positive) Breast Cancer

Hi,

I was diagnosed in Nov 2010 and my Her2 test came back 0-1+, so the onc didn't order the FISH test.  I had a good response to chemo, but there was still some residual cancer.  The Her2 test post op came back 2+ and the FISH test came back positive.  The surgeon thought it was good news, since it explained (hopefully) why I didn't have a complete response.  He was also happy to hear that I had another weapon in my arsenal.  So here is my question - since I have already done chemo, will I have to do chemo again, so that I have something to pair Herceptin with?  Or can I start Herceptin alone?  I'm pretty bummed out about the idea of more chemo - my hair is finally growing back and I have eyebrows and eyelashes again!  

Please help me with any information.  Thank you so much! 

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  • lovetosail
    lovetosail Member Posts: 544
    edited May 2011

    Hi - I also had 1+ on my initial IHC HER2 test, but here at UCLA they do FISH on all tumors and that came back HER2+.  I had neoadjuvant chemo (TCH), and at the time of my mastectomy there was only a tiny bit of residual cancer left, and it was HER2-!  I guess there is growing belief that tumors may be a mosaic of different molecular types.

    To answer your question, my onc, who does research with Dennis Slamon on HER2+ cancers and herceptin, says yes, Herceptin paired with chemo works better than either drug alone for HER2+ cancers.   I can imagine that it would be a serious bummer to have MORE chemo, but do ask your onc about what might be the best course for you.  As you know HER2+ are aggressive cancers and you need to hit it hard.  Good luck with your treatments!

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  • sweetbean
    sweetbean Member Posts: 1,931
    edited May 2011

    Thank you!  My onc just got back to me and said she had to think about it.  She said there were studies that delayed herceptin was still effective, but a little less so than concurrent.  However, I have already had DD Taxol, so she didn't have any data to suggest that more Taxol would add anything.  

    Anybody else have an opinion? 

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  • noellech
    noellech Member Posts: 86
    edited May 2011

    Sweetbean, No you will not need to start chemo again. They will just start you straight away on herceptin if you choose. It will be a walk in the park. They may make you come in every week for the first few treatments to get the levels up in your body quickly, but then you will drop back to every three weeks for a year. I had absolutely no side effects. They will monitor your heart, but other than that, no problem. Don't worry, this will be nothing compared to what you have been through.

     Good luck! 

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  • lago
    lago Member Posts: 17,186
    edited May 2011

    sweetbean Sorry they found it after chemo but at least they found it in time for Herceptin to be effective. I really don't know if they will put you through chemo again but my gut says I doubt it. I am on Herceptin every 3 weeks (started with chemo every 3 weeks).

    The only SE I might be having is fluid retention and now some minor nose bleeding for a few days. My NP doesn't think the fluid retention is from the Herceptin but left over from chemo. But other than that no SE. And my hair is growing out just fine, eyebrows are back and eyelashes 1/2 there.

    Let us know how it all works out. BTW you can update your status to HER2+ and join the triple positive group. Nice crowd in there.

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  • sweetbean
    sweetbean Member Posts: 1,931
    edited May 2011

    Hi there!

     Thanks so much for the replies.  I have decided not to do the chemo and just start the Herceptin.  I think that is what my doctors will recommend anyway, so that is cool.  I don't think additional chemo would offer enough benefit to make it worth it.  I have gotten my  mind around the whole thing and am very glad that they found it in time for me to take the Herceptin.  Just wish I had been taking it this whole time!  Lago, so glad your hair is growing.  I am almost 8 weeks PFC and almost have a decent buzz cut.  My eyebrows and eyelashes are coming in gangbusters - makes me happy!  :) 

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  • lago
    lago Member Posts: 17,186
    edited May 2011
    Sweetbean I don't think you body needs to be put through additional chemo stress but it will be interesting to see if your onc thinks otherwise. See ya on the triple positive group thread!
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