just barely positive

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windingshores
windingshores Member Posts: 704
edited July 2015 in HER2+ (Positive) Breast Cancer

My IHC test for HER2 was equivocal. MY FISH was positive but the ratio figure was only 2.1, just over the 2.0 line between positive and negative, and the number of copies was 5, which is equivocal ( as you all know most likely, 4 would be negative, > 6 would be positive).

I am nervous because Herceptin is a big part of my treatment. Of course I will ask my oncologist when I get to see him next week, but does anyone else have test results like this, and should I be nervous about being more equivocal than positive in the context of Herceptin treatment?

My tumor was 1.4cm, er+ and pr+, grade 2 1/2 (2 labs differed), and it looks like a strong ki67 result. I had a unilateral mastectomy on 3/6. I believe my oncologist is going to have me do Taxol 12 weeks w/Herceptin for a year and then a hormonal treatment, not sure which yet.


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  • debiann
    debiann Member Posts: 1,200
    edited March 2015

    If your MO thinks herceptin will help thats a good thing, it can be very effective. Most tolerate herceptin very well, your hair grows back and the side effects are often minimal. They will monitor your heart closely and stop the herceptin if there is a problem. Generally the heart returns to normal when the drug is stopped. 

    I hated chemo, I did 6 rounds of TCH, taxatore/carboplatin/herceptin, they were hell, but herceptin alone has been no problem. I'm excited to say only 2 more tx!

    Good luck to you.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited March 2015

    I wouldn't worry about the Herceptin that much; it's the Taxol that can be a bear. Taxol is Taxotere's gentler cousin (that's why it's given weekly), but it still can have significant side effects. It gave me diarrhea, achy bones, fatigue, and mild neuropathy in my fingertips and toes (some get worse SEs). I'm getting Herceptin alone right now and have no SEs.

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  • windingshores
    windingshores Member Posts: 704
    edited March 2015

    Thanks all. And sorry I wasn't clear. It isn't that I am nervous about side effects of Herceptin (though I understand everything is going to be tough, even with the "lighter" regimen.

    What I am nervous about is effectiveness. Since my oncologist is only doing Taxol for chemo, I am wondering whether that, and Herceptin and hormonal treatment is enough. It is just that my tumor was very aggressive, and the HER2 test wasn't all that positive. So I wonder if I am truly safe for the future with only the Taxol for chemo, since Herceptin may not address my tumor as much with a nearly equivocal result.

    I guess, in other words, I will have to ask if Herceptin is effective for a 2.1 scoring tumor, or if it would be safer to do TCH versus TH.


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  • debiann
    debiann Member Posts: 1,200
    edited March 2015

    There's no way to know for sure, but TH is what many others are doing with a tumor that size. Your MO may consider TCH if you really want it. I found it to be a pretty harsh regime, but many do fine on it. Keep mind you'll also be offered anti-hormone therapy, and this is a very important part of your tx.

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  • windingshores
    windingshores Member Posts: 704
    edited March 2015

    I am 95% ER+ so that helps. I see my oncologist on Wed. I may be spinning my wheels a bit. Am trying to decide on scheduling a second opinion. But want to get started asap too.

    I was surprised that, staying up late, I could not find any studies on Herceptin for equivocal results. Technically now I am positive but they were using 2.2 as the cutoff so my 2.1 would have been negative along with the # of copies at 5, not over 6.

    If I find out anything more I will let people know. It is apparently a question that has been asked before here because my google search turned up a couple of old threads.



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  • GraceB1
    GraceB1 Member Posts: 213
    edited March 2015

    I was also right on the line for needing Herceptin but went ahead and got it. I just got done in Feb. with few side effects. My MO said that the fact that I was 100% ER+ made hormone treatment at least as important as the chemo. So far so good - I had a PET scan last month ahead of getting reconstruction and I'm NED right now.

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  • windingshores
    windingshores Member Posts: 704
    edited March 2015

    Graceb1 I am 95% ER positive so that is reassuring.

    Kayb thanks for the explanation. That is exactly what I have been trying to research.

    I only allow myself 1-2 hours of research each day so I can keep my head straight. Switching to Sunday papers and grocery shopping!

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  • windingshores
    windingshores Member Posts: 704
    edited March 2015

    The cancer center I am using for surgery and treatment, as opposed to the center that did the biopsy, got post-mastectomy pathology results that make my HER2 status more uncertain (1+/2+). They are now doing a CISH. This is delaying my treatment at this point. Apparently my tumor was heterogeneous with mixed ductal and lobular, and some parts HER2+ and others HER2-. In this period of delay and uncertainty, I have also called for a second opinion consult. Has anyone else had equivocal and/or conflicting HER2 results?

    Also- I was wondering about my other breast, which I still worry about having cancer in it. Pathology on the "cancer breast" showed additional cancer/calcifications that did not show up on mammogram. What if they don't treat my right side with Herceptin but my so-called left breast contains hidden HER2+? I wanted this breast off as well but my surgeon convinced me to do it later due to health issues. Then I asked to have it taken off on 3/20 but was told chemo would happen asap. At this point, I could have had the second mastectomy without losing any time of treatment!

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  • Debutante8
    Debutante8 Member Posts: 45
    edited May 2015

    @Kayb--All HER2 positive get chemo? I am not! MO just told me today that I would not be having chemo or Herceptin due to the size of invastive, which was 1.5mm. Now I am worried!

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  • windingshores
    windingshores Member Posts: 704
    edited May 2015

    I had 4 oncologists involved at 4 different breast cancer centers at one point, and they all planned Herceptin and Taxol for my 1.4cm tumor that initially was slightly positive at 2.1 ratio. That gentler regimen was, I think, considered the best with my age being mid-60's. but some do adriamycin too, and/or one of the "c"'s like cytoxan (THC).

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  • Debutante8
    Debutante8 Member Posts: 45
    edited May 2015

    Yes, I am so glad I had my mamm when I did!

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  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited June 2015

    debutante8 i also have 1.5mm of IDC but am strongly considering TH because of strong her2 status FISH of 4.8. I havent made up my mind yet. Recent research shows herceptin in 1a cancers can take recurrance rates close to zero.

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  • AllYouNeedIsLove
    AllYouNeedIsLove Member Posts: 22
    edited June 2015

    I was wondering the same thing, my HER2 came back equivocal. It was sent out for more testing and came back 2.2 So I wonder if it is better to have a lower number, or does it not make any difference. It's very confusing!

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  • april25
    april25 Member Posts: 772
    edited June 2015

    Interesting discussion.

    My initial biopsy path was HER2+ inconclusive. FISH was Positive. Never got the exact results... but I think it wasn't strong.

    It was suggested I get neoadjuvent TCH by one MO and 2nd Op. TCHP. I went with TCHP, since Perjeta is supposed to significantly help Herceptin. Got 6 cycles.

    Had a LX, Path on that reported that my HER2 was inconclusive. My MO thought that might be because I'd already had chemo, but he wasn't totally sure!

    My ER+ is in the 90%s. PR-

    I'm getting Herceptin for a year. And am doing rads. -- Oh, and while my tumor shrunk a bit, I did NOT get a PCR.

    At this point I haven't heard anything else and just have to trust my MO, I guess! But I definitely have questions!

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  • Italychick
    Italychick Member Posts: 2,343
    edited June 2015

    I had three rounds of her testing, first two were equivocal, third came back 2.2 with low level amplification. I think they look at the cells and the chromosomes, like CEN17 to HER ratio, and that is how they came up with me being slightly positive, and recommended herceptin, but said monitor treatment, whatever that means. My MO left it up to me, and I am doing Herceptin because I found a discussion between doctors showing that it helps with small, slightly positive tumors, but they aren't sure why.

    So far I have had one Herceptin only treatment, and felt a little flu like for a few hours, and have a drippy nose when I bend over, but that is about it. My ejection fraction has stayed good, went up 8 points after chemo ended.

    It is such a powerful drug, and I was led to believe that it is more effective the earlier you get it.

    I could have done just taxol and Herceptin, but I wanted the carboplatin because it is supposedly synergistic with Herceptin, and since my ER is negative, I wanted to go with a stronger chemo since I have no hormonals to use long term

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  • husker
    husker Member Posts: 7
    edited July 2015

    I also had to go through three tests before the eqivical changed to positive. 2.3 tumor. Having bilateral mastectomy in two weeks then starting treatment. I am thankful there appears to be a drug that combats these overly-assertive cancer cells but so scared of side effects.

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  • april25
    april25 Member Posts: 772
    edited July 2015

    Good to know that Herceptin is still OK for even those of us who aren't strongly positive HER2!

    I already did the TCHP, and now I'm just getting Herceptin every 3 weeks for a year. I had super-bad side effects on TCHP, but compared to that, the Herceptin only seems like nothing. I stopped chemo several months ago and am still recovering from it-- so it's hard to say if the Herceptin is doing anything. I don't think it is. So if it's doing any good at all, even in my currently equivocal HER2 state, I don't mind doing it. I feel pretty normal doing it, anyway, and I'm in the middle of my 7 weeks of rads, too! --But some people do have SEs from Herceptin alone, I guess...

    I do wish I'd had a better response to the chemo, though. I still had live cancer cells, although the tumor did shrink a bit. However, I had no lymph involvement, so I should just be happy with that!

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  • april25
    april25 Member Posts: 772
    edited July 2015

    I asked another MO about my Inconclusive HER2+ Path results. She said it was because I had neoadjuvent chemo. The path results aren't going to be that informative because of that. They really have to go by the biopsy, and the FISH showed I was POS.

    So that explains that.

    I just had my 5th Herceptin only infusion today (post chemo, 1 year of Herceptin every 3 weeks). I still have some diarrhea, which was my major bad SE from chemo, but as it seems to be slowly improving and not getting worse, they think it's not from the continued H, but left over from the chemo (taxotere).

    I don't think I'm getting any SEs from it that I can tell. So far, so good!

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  • april25
    april25 Member Posts: 772
    edited July 2015

    Hi kayb! Yes, I've been taking a probiotic... BioK, which is one of those that need to be kept refridgerated... started during chemo on MO recommendation... But it really didn't do much to stop things then or now, but I figure it can't hurt, so I'm still doing it. The good things is that it is very slowly getting better! So I'm just dealing with it and not worrying too much.

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