Tumor 20% Her2 positive and some weak ER+ cells -- How to treat?

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dono7392
dono7392 Member Posts: 28
edited December 2019 in Mixed Type Breast Cancer

My 2 cm tumor has a focal area of Her 2+ (20% of tumor) and some ER weakly positive (15%) and negative cells. Local oncologists want to treat it like Triple Negative and Her2 positive (with AC-TH) but out-of-town oncologists would treat like Her2+ (Carboplatin+Herceptin). Supposed to start chemo next week but not sure what to do! Please let me know if you have any experience with this or input--thank you

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  • windingshores
    windingshores Member Posts: 704
    edited December 2019

    This is a tough one. I had a positive HER2 test, an equivocal and a negative. Then I had someone test again using 60 cells instead of 20 and got a negative, tough at the high end of normal. I have mixed ductal and lobular and the ductal areas were higher in HER2 expression. Someone told me that DCIS is even higher so that can affect results-?

    I am 5 years out but still wonder if I was undertreated, but I don't think about it much.

    Can you have the 20% of your tumor retested? How do you know it is 20%?

    I would keep seeking opinions until you feel good about your decision. I had other contradictions and ended up seeing 4 oncologists. The last one really did everything possible to make me feel safe going forward.

    I also talked with oncologists about risks of Herceptin versus benefit. Hard call.

    Sympathies!


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  • dono7392
    dono7392 Member Posts: 28
    edited December 2019

    windingshores. Such a difficult position to be in. I am just over the cusp of positive for Her2+ so fear I am being over treated and possibly not focusing on triple negative portion of tumor. I feel like I’m making a life or death decision! I take it you determined the risks outweighed any benefits? My drs are not very good about explaining that aspect to me.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited December 2019

    dono - Triple Negative means ER negative, PR negative and HER2 negative - so you aren't that. You are fortunate to be HER2+ because there are good treatments available now. Treating for HER2 + (even if it's mild) will likely take precedence because it's more virulent. There are lots of different treatments for ER/PR negative. They aren't usually as critical and can be complementary to the HER2 positive treatment and most given at the same time - like I had.

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  • dono7392
    dono7392 Member Posts: 28
    edited December 2019

    MinusTwo: The Her2 positive portion is a small "focal"' area of the tumor with the rest being Her 2 meg. Wouldn’tthe 80% that is ER/PR/HER2 negative be triple negative and treated as such?

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  • dono7392
    dono7392 Member Posts: 28
    edited December 2019

    MinusTwo: The Her2 positive portion is a small "focal"' area of the tumor with the rest being Her 2 neg.Wouldn't the 80% that is ER/PR/HER2 negative be triple negative and treated as such?

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited December 2019

    dono - I don't remember & can't tell by your signature line - aren't you getting all this information from biopsies? Since only small samples are taken, you don't know how much will be HER2+. I'm not a doctor, but never the less starting HER2+ treatment along with chemo is the standard option.

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  • dono7392
    dono7392 Member Posts: 28
    edited December 2019

    I put the information in my profile, so not sure why it isn't showing up but.....I had surgery and they examined the entire tumor "block"

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited December 2019

    Just another data point, I was TNBC and treated with Carboplatin and Taxotere, both often given with HP to Her 2 + people.

    Carboplatin is fine to treat TNBC even w no Her 2 positivity. High grade, basal or basal-like TNBC cancers respond well to Carboplatin.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited December 2019

    dono - you have to select to make your information 'public' and not private.

    As SB said - TC is a good choice. I was ER/PR negative and HER2+. I had taxotere & carboplatin in conjunction with the herceptin & perjeta for HER 2+. Long days but all infusions given in one day every 3 weeks for 6 sessions.

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  • windingshores
    windingshores Member Posts: 704
    edited December 2019

    Just to clarify, the final 60 cell count on the ductal areas of my IDC, ILC, DCIS tumor (where the HER2 was stronger), ended up being negative. With a positive, a negative, and equivocal and finally a negative with 60 cell count, I went with no Herceptin and no chemo. My Oncotype was low and I was highly positive for ER/PR so I went with anti-hormone treatment only.

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  • dono7392
    dono7392 Member Posts: 28
    edited December 2019

    Thanks for clarifying. That’s wonderful that you didn’t need chemo!

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  • WC3
    WC3 Member Posts: 1,540
    edited December 2019

    My cancer center is very reputable and does not give Herceptin and Adriamycin together due to the risk of heart damage. I'm not sure if that applies when giving them sequentially though. I kind of think it might because I have seen a study that showed Adriamycin and cyclophosphamide worked better against HER2+ cancer than a taxane and carboplatin and I would think if there were a way to safely combine the AC with Herceptin then my cancer center would have, but they seem to feel the taxane and carboplatin is the safer choice with Herceptin. It would definately be something to discuss further with an oncologist.

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  • dono7392
    dono7392 Member Posts: 28
    edited December 2019

    Yes! My concern as well. I already have a bicuspid heart valve and I'm very frightened of heart damage by A + H. I have to decide by tomorrow which regimen to choose!

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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited December 2019

    Dono, I had Taxotere and Carboplatin with my herceptin. With heart problems to begin with, I would be very careful about the Adriamycin.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited December 2019

    Dono - I too had taxotere & carbo with herceptin & perjeta. I had heart echo tests every 6 weeks. I did not have a complete response, so after surgery I had AC chemo. Herceptin was halted for the duration of that and not started again until more echos. It's my understanding that any heart damage from Herceptin is usually reversable, while that from adriamycin is often permanent.

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