Want your 2 cents worth on this.

[Jean]

WHY, is it that when a women is dx. with bc and told she is Her2 positive that the dr. does not make it a standard of practice of then ordering a FISH test?

The immunohistochemical analysis, does indicates that
a patient has a score indicating a positive her2...but
the FISH should be performed....at this point.
What woman/or/man would know enough to ask their
dr. to have this test done?

Once we become educated with our disease we learn
the depth of this disease. It makes me greatly concerned that dr's are not doing this. The average patient does not know to ask the dr. what your biopy samples will be tested for?

[PinkGirl]

I'm a bit confused. I thought the FISH test was how we
were dx. Her2+.

[Hopeful]

Information on IHC and FISH testing is available on the home page of this website: http://www.her2support.org/her2fish.pdf

IHC tests for the amount of Her2 protein there is in the cell, while FISH tests for the number of gene copies of Her2. There is high concordance between IHC +++ and FISH. FISH requires a special kind of microscope and is more "work for the pathologist," as my onc put it. The normal protocol is to use IHC testing, and if it is + it is negative, +++ positive, ++ indeterminate. The indeterminates are rechecked tested using FISH, which is considered definitive at that point.

Hopeful

[Yorkiegirl]

I know with mine it was tested first by IHC and was showing postive for that, just to make sure the path lab then sent it for FISH testing. I just thought that this was normal for the path lab to do. Hmm maybe not. but I know mine did .

[PinkGirl]

Thanks for that explanation Hopeful.

[AlaskaAngel]

As Hopeful pointed out, these tests are "equal" if done correctly. However, because not all labs do as good of a job on them, the result is:

If they are done in a place such as a major cancer center where they are done in greater volume, the people doing the test are more likely to have more practice at doing them and have better access to better training and repeat evaluation in doing them correctly than when they are done now and then in a smaller lab, say, in a more rural area.

That results in a decision in one place by an onc that the volume is high enough to believe that the IHC is accurate enough, and a decision in another place by an onc that the testing probably needs to be confirmed by FISH testing. One might ask logically then why the IHC was done at all in the first place. In smaller facilities, cost is more of a factor, and although I am only guessing, the cost is probably less for IHC testing. Since only 1/3 of bc patients are HER2 (and many are only marginally so), doing the IHC first would be more economical and practical.

Hope that helps.

A.A.

P.S. Which may also mean that it is possible that HER2's can be "missed" in areas that use the IHC but don't have high volume testing.

[DonnaD]

Hi Girlfriend,
My opinion, always get the FISH test. I knew so little when first diagnosed. I am so grateful for a top notch surgeon and onc that helped me during that early time. I had a core biopsy at a local hospital and they never even did an IHC or FISH.

After surgery at a large teaching hosptial my IHC was positive but my surgeon would not proceed with recommendations for treatment until the FISH test was done.

As we learned at ASCO Jean, there needs to be a standards for each lab running these tests (like Angel Alaska mentioned). IHC can be wrong. Even though I was at a large teaching hospital the FISH test took several more days for the results to come back. Once back my surgeon and onc felt confident to proceed with recommendations for treatement.

The FISH test is more expensive but I had no trouble with my insurance paying for both. I guess the main question is how do we inform newly diagnosed patients of information they need for treatment? Not all will search the web or have surgeons and onc that go beyond the standard care.

Very thought provoking Jean.
Donna

[Jean]

Thank you one and all for responding. And Donna you hit it on the nail head....those women who are newly dx and DO NOT KNOW.... or maybe not even have a computer to do research...

so many what if's....

My concern for other newly dx. women is that they are able to read easy information (how about flyers breast health care centers) to get more information out.

As many of you know I was seen at three top hosptials in NY...yet I had to insist on having a FISH test done.
But please remember also I was not having chemo/or/herceptin at the time ordered from any of these dr. since standard of care of radiation/and/AI.

I was just wondering how we as women educate or have more information out there in offices, breast health
care centers...where women are waiting for mammograms etc. to have this type of information at their hands.

Just call me concerned...as I hear so much of this.
Thank you one and all for responding....

Jean

[harrie]

I learned something. Thank you Ladies! I thought everyone had the FISH done to find out the status of the HER2.

[Becky]

I will say that I only had IHC done. Once at my local community hospital where I had my lumpectomy done and the other when I had additional slides sent to Sloan Kettering about 3-4 days later. Naturally I was a +3. W

As many of you know, Herceptin was not available in the adjuvant situation when I had chemo but I was able to get it starting about 3+ months after chemo was finished due to the trial being stopped due to the great results. ASCO recommended that all women who were 6 months or less from their last chemo should begin Herceptin immediately (I was in this group and had to rush although shortly thereafter they changed this initial recommendation to any woman 12 months or less from their last chemo). To make a long story short, I immediately went to my onc (one of the doctors I eventually fired) and said I wanted to start. He told me I "misheard" and that it was 6 months from diagnosis and I was beyond that (of course a debate ensued because I was sure of my facts). I went immediately back to Sloan Kettering (who asked me to bring my chemo records to verify I was in the 6 months or less group). I got my muga and they insisted on running a FISH (even though I had 2 IHC tests, one of which they ran). I never got the FISH done because I told my original onc I was leaving to go to Sloan to get my year of Herceptin and he countered with (and I will never, ever forget this), "Well Becky, all you had to do is tell me you wanted the Herceptin because I will give it to you". So I went back to him out of convenience (close to home in NJ versus going into NYC). He didn't mention the FISH and I wanted that year of Herceptin too much to risk an iffy FISH (and there is data saying one benefits from positive FISH or a +3 IHC). It is the women in between that have to be aware for sure. There is so much I wish I knew before each step - even radiation (as I went along with the flow thinking that step was more protocol than anything and I was wrong, wrong, wrong and got radiation on the invasive lumpectomy side but did NOT get radiation on a small, low grade DCIS on the other side (and I should have so this small "nothing" is my weakest link now)).

I wanted to put together a question book or list and try to get it out there somewhere and I am not so sure how to proceed.

Love to all

[AlaskaAngel]

I never was FISH'd either. My IHC was done at a central lab and neither of the 2 oncs at the cancer center in Seattle that I asked were interested in having the FISH done for me.

I sure found out how clueless I was at time of diagnosis, too. It is really, really hard to develop enough knowledge AND perspective in time to make decisions about it.

A.A.

[juanita]

Wow, thanks for the info, which I knew none of.

[Jean]

Becky and A,
I am held to so much disclosure in my business....how does a dr. get away with not telling all?

If we do not dig for information and details I hate to think ...what would be ...

I have thought often of providing a list of questions and leaving copies in the Cancer center. I went this week with a collegues sister who was recently dx. with bc to
the onc. office and the onc. was surprised I knew what I did and my questions.

So many many women are not being informed.

[Joan M]

Jean,

My situation was a dilemma which led to the FISH test, and it also points out the extent of variation in test results.

My IHC came back 3+ and I took Herceptin off-label. But two months after my bc surgery in my right breast and after two cycles of A/C, I noticed a small pea-sized bump in my reconstructed breast, which when removed turned out to be the same breast cancer.

Since it was never tested for ER/PR or HER2, a year later I asked for that and it tested ER-/PR-, like the original tumor, but HER2 2+, as per IHC. And when it was put to the FISH test, it tested negative.

My onc suggested I have both tumors tested in a major lab, so I sent to Sloan-Kettering. The results were IHC 2+ and the FISH test was borderline (2.0). The onc there considered it borderline positive, and said it's better to err on the safe side. I had finished Herceptin already and he said it was good that I got it.

The pea-sized bump has never been a problem. It seemed to be the result of either the skin-sparing mastectomy I had to faciliate the DIEP flap reconstruction or perhaps seeding from the core biopsy since it occurred just beneath the scar from the biopsy.

It's occurrence also seemed to indicated that I was not responding to A/C since I was already two cycles into the treatment.

My own theory though is that the chemo did not reach that area due to scar tissue from the mastectomy, reconstruction and removal of lymph nodes because although all my hair fell out everywhere, it never really fell out under that arm pit. Go figure.

I then had radiation right away rather than to wait until the end of the A/C and Taxol that followed.

Also, Hopeful's explanation is generally the way it's done. So if a woman is denied the FISH test, it may be because she was IHC3+.

[Melissa]

Yes when I was first dx I was told with my two 3+ results, one from biopsy and one from surgery, that a fish was not needed. I did receive Herceptin but I later learned that all her2's need the fish test.
I honestly wonder if all onc stay updated. There were times I felt like I was informing my onc about new information. Treatment in cancer is changing so rapidly, not just BC, that I think the onc should specialize in a smaller number of cancers. Maybe this is not cost effective for them, not sure. My onc was a general onc and he treated people with HUNDREDS of different cancers but he did come highly recommeded by my surgeon and several others in the medical community. And I must say he never turned me down for any test or information I needed. I was the first to ask and have the tamoxifin resistence test and since he's tested several others. Seveal onc have never heard of the serum test. Even if an onc does not make it a practice to use a test I believe they should know about it. Proof that one should stay well informed about their condition/treatment.