HER2 Borderline Negative

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Sandra2
Sandra2 Member Posts: 13
edited June 2014 in HER2+ (Positive) Breast Cancer

I've been reading discussions throughout the board over the last few days and found it immensely helpful in putting my own recent diagnosis in perspective. I was feeling pretty sad and beginning to feel somewhat less than hopeful until I found my way here earlier this week.

I had a mastectomy mid-June for a stage 1 grade 2 8mm IDC with negative nodes. I am also ER+ and PR+. I started on Tamoxifen about three weeks ago and seem to be doing fine on that. The problem is that the Her2 testing came back as 2+ on the first basic test and then they did another more accurate test referred to as CISH which came back showing the gene amplification as 4.12. They are calling this borderline negative which has me feeling more than just a little bit anxious. In fact, this is what has been causing me great angst since my visit to my oncologist in mid-August.

I've done quite a bit of searching on the Internet and can't find much info on numbers that are in this grey area. I did find one link from the discussions here to a site that recommends retesting but nothing about what it might mean if the numbers come out the same. I meet with my oncologist again next Tuesday and want to make sure I ask the right questions. I want to ask for Her2 retesting. I read that being Her2+ can interfere with the Tamoxifen but don't know what 'borderline negative' Her2 might do.

Is there anyone else that has come up in this middle area? I've searched the discussions and couldn't find anything.

Thank you for helping me find my way back to being hopeful... :-)

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  • CTG
    CTG Member Posts: 143
    edited September 2007

    I am her2+ er+pr+. I have taken tamoxifen and herceptin at the same time. I can tell you the FISH pathology is considered most accurate for the testing of Her2 onco gene. I think anything over a 2 shows enough over amplification to be clearly her2+.  You may want to check out the website that is all about her2

    http://www.her2support.org/ this website has boards that have the best information on being her2 positive.   Look at the her 2 group board. Best of Luck to you. 

    CTG

    dx fall05 stage4 liver and bone mets

    dx fall06 brain mets / spring07 brain mets gone

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  • Sandra2
    Sandra2 Member Posts: 13
    edited September 2007

    Thanks for taking the time to respond, CTG...

    I found my way over to the her2 support website you mentioned and found lots of really valuable information. I also asked my question on that board.

    The 2+ result came from the first test which was the IHC one. They do that test here on all breast cancer patients and if it comes back 2+ or higher they do a more accurate test. The FISH test used to be the one used but more recently have begun using something called CISH which is supposed to be just as accurate but less costly and has some other advantages.

    Since I posted I've read lots more and understand how the scoring works on both tests. I think with all of the information I have been dealing with everything was running together and nothing was making much sense. With the CISH test, having 6 to 10 gene copies would be low level amplification and make you Her2+, high level amplification is >10 copies. Borderline negative is between 4 and 6 copies. Of course, I come up as 4.12, not 3.99...

    I printed some articles about polysomy 17 which may or may not mean anything with my count. I'm feeling more confident about my Tuesday appointment and more than anything just want to be able to ask the right questions.

    Thanks so much again...
    Sandra :-)

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  • Sandra2
    Sandra2 Member Posts: 13
    edited September 2007

    Just as an aside, I haven't heard that anyone else has come up in that borderline negative range. I would be interested in finding out what information they were given by their oncologist in terms of what it might mean...

    Sandra

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  • wallycat
    wallycat Member Posts: 3,227
    edited September 2007

    The economist magazine had an article about HER2 and a study they were doing where they were administering Herceptin and then part of the process, they retested for positive/negative...10% of the group retested negative after initial positive result.  Conclusion seems to be that some negatives or borderlines may benefit from herceptin and warrant retesting. I am not sure that this is helpful just that it appears there are flaws in HER2 result gathering.

    Not sure how many times someone requires re-re-testing... 

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