her 2 neu

shelleyt

in january 2014 i had a bilateral mastectomy, told i would not have t have chemo or radiation, 2 weeks later they said the pathologist report said i had her n neu postive 3+ using IHC testing and i would need chemo and herceptin, i asked them to retest and they assured me it was accurate, so i went thru 12 rtounds of chemo and herceptin and now i am getting herceptin every 3 weeks until feb 2015, last week i called johns hopkins and asked them to retest using the FISH ecause i have been hearing that the IHC test is very unreliable, they agreed to retest using FISH, well i got a call from them telling me that it is negative!! i have had oncs calling from john hopkins trying to make sense of all this and they are now going to retest using IHC again to see what it comes back as again, the area was only .06cm which you would think there isnt any more tissue left for them to keep testing up the wazoo.. i am really in a state of shock , i have had 12 ounds of chemo and 15 rounds of herceptin and my onc wants me to continue the herceptin until february, I am at a point where i do not know what to do , this is a big problem, is there anyone outhere that has had her 2 neu 3+ using IHC and her 2 negative using FISH?? i am so confused andafraid that i had chemo for no reason. pleas if anyone out there can help me understand this i would be grateful.

AlaskaAngel

I very much understand that fear, and am not "just saying that". With so little tissue to test, it is harder to "get it right". But modern medicine favors overtreatment for the majority in hope of saving a minority, in a somewhat odd kind of logic. With early stage bc, the majority of patients who are treated get NO benefit and get whatever problems may result, minor or major. I don't know if understanding the fact that a whole lot of people are also doing the treatment without benefit is of any comfort at all, or not. You did your best to raise a very pertinent question and were unable to get a better answer, and you have done the treatments. There are those who are so panicked about the concept of cancer that "doing it by mistake" will seem only as if you are "safer" now because you did that. That includes some medical providers -- often those who have never had to do the treatment themselves. I'm not one of them. I'm only writing as one human being who understands how frightening it is for you to be in the position you are in.

I survived a chemotherapy regimen less often used now for HER2 positive patients. I too asked for confirmation testing and was refused, so I too know what that is like. My sample was bigger -- 1.9 cm -- but I still had very logical reasons for asking for retesting.

I'm sorry you are in the position you are in, and I do think as one part of going forward, you should look into the possibility of quality counseling for the damage you are suffering.

AlaskaAngel

CoastalXPat

Hi Shelly, I can appreciate your frustration. So when they first did my needle biopsy, via FISH, I was HER2 negative, but when they did the tests on the lumpectomy tissue, via IHC, I came back HER2+++. Seems the protein was expressed on > 99% of the cells. 

My MO said that if FISH is negative and IHC is strongly positive, it's better to follow the IHC results. If I understand it correctly, this is because FISH measures the genetic properties that tell the cells how much protein to express, while IHC more directly measures the protein itself. But in the end, it's the protein itself that will control how fast the cell divide and spread, so it's more important to pay attention to that. Sometimes there can be other things in the cells that cause the protein to over-express.

Now this is different from the case where the IHC is ambiguous. In that case they'll try to resolve the ambiguity by doing a FISH test. And if both FISH and IHC are ambiguous, I think they might resort to an Oncotype test.

I really, really didn't want to do chemo so I asked my MO to re-test the lumpectomy tissue using FISH, even though the IHC wasn't ambiguous. I was afraid someone might have messed up the samples or something. But the FISH came back as HER2+, very different from what the needle biopsy said. In the end my MO thought they may have originally tested the wrong part of the tissue, since w/the biopsies they get a much smaller amount.

I wish you the best of luck with this. And I think, if you don't feel comfortable with what you're hearing, it  could be worth getting a second opinion.