Mixed reports on HER 2

blindgirl
blindgirl Member Posts: 3
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Hi there, I am joining you from Switzerland, hope you do not mind.This forum is only place I found has a section for ILC. I was diagnosed with ILC and had bi-mastectomy on Feb 18th. Nodes clear no mets. Now I am on AC x 4. First is done, second is next week.

My hospital histologie report says that based on FISH test my score is 0 and therefore I am HER negative. However my oncologist from my local clinic requested additional test CISH for chromosome 17 and it came as following:

in ILC part of tumor HER 2 gene 2-6 copies

in LC in situ part of tumor HER 2 gene is 4-6 copies.

So doc said I have too much, it should be 2.2 

With my chemo brain at the moment I do not get it how I can be Her 2 negative and still a bit positive? My doc wants a me to do Tax weekly for 12 weeks and herceptin for a year.

I so do not want to do it, with two small kids and doing Tax in June means whole summer is ruined for my family. Besides my hospital doc insists that I am HER 2 hegative. I just wonder if someone can explain that to me? I think I shoudl seek seconf opinion. The thingis if I did my treatment in my hospital where the did operation they would consider me HER 2 negative. But i went for convenience to my local cancer centre and here oncologist ran additional test. he says I am borderline whether to do chemo or Tax or Herceptin. I am at low risk.

sorry, i am so confused. Hope someone here can help me her. thanks a lot.

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  • debbie6122
    debbie6122 Member Posts: 5,161
    edited April 2011

    blindgirl- Hi and welcome to this forum sorry you had to join us but glad you found this site, you will find lots of caring supportive woman here. I'm sorry I cant answer your question I'm not sure why it came up different, I have heard on these boards that it does change but dont want to give you an incorrect answer, Im sure someone will come along to answer that correctly for you. I just wanted to welcome you and let you know you are in my thoughts and prayers, didn't want you to feel ignored sometimes the boards move so quicky that the post will get unnoticed and night time it moves a little slower i will check back and "bump" this up so it will stay at the top of the forum so you will get an answer. ((((((((((hugs)))))))))))

    Debbie

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  • nagem
    nagem Member Posts: 353
    edited April 2011

    The tests have some variability, and many people get contradictory results. I know it's a nuisance to undertake a yearlong treatment, but most people find herceptin very tolerable, not at all like the chemo drugs you are getting now, and the infusion takes just a few minutes. And most people tolerate the taxanes well too. So if your decision is being influenced by the misery of your current chemo regimen, you should take that into account. (I had the same regimen that is being recommended by your more aggressive doc.)

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  • dlb823
    dlb823 Member Posts: 9,430
    edited April 2011

    blindgirl ~ Dr. Slamon, the creator of Herceptin, is at UCLA, and some oncologists there are especially well researched regarding Her2.  In view of your location and conflicting test results, I'm wondering if Dr. Slamon might do a phone consultation with you.  I had some treatment at ULCA, so can send you a Private Message (PM) if you would like contact information for the oncology department and my oncologist who is a protege of Dr. Slamon.  I believe there are also a few women on these message boards who have seen Dr. Slamon, and they might also weigh in if they see this thread.   Deanna

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  • wallycat
    wallycat Member Posts: 3,227
    edited April 2011

    Welcome!

     I guess I have more questions than answers.

    If your FISH score was zero, why did your doctor look further?  what is your tumor grade?

    How large was your tumor?  Did they do an oncotypeDX score on you or just standard of care in Switzerland to do chemo (my previous onco said many European countries do chemo out of the gate to shut down the ovaries)?

    I do not think many of us had HER2 retested if it came back a zero; only retested if it was borderline so that is why I ask.

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  • blindgirl
    blindgirl Member Posts: 3
    edited April 2011

    Hi ladies and thanks for your replies.
    I am just confused why I have different Her 2 statuses and of course I am not keen on treatment if it is not necessary. I am tolerating AC quite well so far. I had only two days when I needed to sleep it off. I hope all following cycles will be the same. I am terrified of starting Taxol. I do not think I can take that much, I am boobless, I am almost hairless (not yet but any day now); losing my nails in summer; risk of neuropathy; nose bleeds etc besides, it is just me all week all day long with kids, how am I going to do it for 12 weeks? my doc says on Taxol I will probably crush for one day a week.
    I am prepared to take herceptin.
    My after operation histology report says(bear with me, it is in german and i am not fluent) :
    size 2.5 cm; B.R.E. score 3 + 3 +1 = 7; G2; pT2 (m); ER+/PR+ ; 0/3 nodes. HER 2 negative
    I chose to have my treatments in centre near to my house so I have different oncologist form the one I saw in hospital. My current oncologist digged out biopsy report (before op) which said there was less than 10% area with HER 2 positive. and that when he asked for additional CISH test which came back about chromosome 17.
    I've never heard about OncotypeDX test and I have not been offered to do it but i am going to ask about it next week.
    Both doctors, from hospital and in and my current say that I am borderline for chemo. I've decided that I need to do AC and rads. But now this thing he found and i just cannot understand why has it came up now? If I stayed for treatment in my hospital I would do just AC x 4 and rads. they are still saying I am HER 2 negative.

    Thanks for your time and for your responses.

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  • wallycat
    wallycat Member Posts: 3,227
    edited April 2011

    I am sorry, I missed the part about already starting chemo.

    Oncotypedx helps determine if chemo would benefit you...but since you are doing it (unless you want to try to avoid taxotere) oncotypedex may not be useful to you.

     I presume they have staged you at stage 2 because your tumor is over 2.5 (which is small for ILC).

    I did not see what your grade of tumor was.  My onco says if you are graded at 1 (this is not the same as stage), then your negative Her2 would no doubt be accurate.

    I am unfamiliar with chromosome 17 and what it implies.  Perhaps someone else has more knowledge on that and posts.

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  • Gitane
    Gitane Member Posts: 1,885
    edited April 2011

    Hello blindgirl,  

    Perhaps it would help you to understand a bit about the Her2 tests you had.  There are three you have mentioned here.

    IHC - This test measures how much Her2 protein is on the surface of the cell.  Chances are, if your report says your Her2 score was zero, it was on this test.  Scores of 0 or 1 mean the protein is not overexpressed, higher than that ( 2+ or 3+) means it could be.

    FISH - The FISH tests reports interpret the Her2 copy number changes relative to the chromosome 17 copy number (centromeres/nucleus).   A ratio < 1.8 is considered normal, 1.8 - 2.2 is equivocal, > 2 is moderately amplified and > 4 is highly amplified.

    CISH -  The CISH counts the average Her2 gene signals per nucleus.  30 cells are looked at and signal numbers averaged.  An average of 1-5 signals per nucleus is considered non-amplified.  If the average is >5 or if there are signal clusters it is considered amplified.  If the average signal is between 4-6 per nucleus another 30 cells are enumerated and the final average is calculated from the 60 cells.

    As you can see, each test looks at the same thing a little differently.  It is also important to remember that a tumor has pockets of cells with different characteristics.  You can have different results if different parts of the tumor are looked at by the pathologist.  Pathologists must be careful to select areas to examine that are representative as best they can.

    You have already begun treatment with Adriamycin.  This drug can be hard on your heart.  Herceptin is also hard on your heart.  You want to be very sure that the Herceptin treatment is needed.  A second opinion could help you make the best choice.  You may want to have your pathology slides and reports sent to another institution to get more information.  It may even be worth having tests repeated by other pathologists. 

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited April 2011

    Blindgirl - I was reading up on onctotype dx the other day to see if it was of any benefit for HER2+ve tumours - it turns out that the onctype can confirm if HER2 or not - worth pursuing with your onc.

    Sue

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