Her2/neu and overwhelmed!

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aris
aris Member Posts: 124
edited June 2014 in HER2+ (Positive) Breast Cancer

I'm feeling overwhelmed right now.

I had a lumpectomy close to 2 weeks ago and met with my surgeon for the follow up today. My original core biopsy showed I was Her2/neu amplified (2 was the ratio). This was first done with IHC and then sent for the confirming FISH.  I had my lumpectomy at a different hospital than my core biopsy and the path report in house (the IHC) showed I didn't have Her2/neu at all. They sent it out for the FISH and it came back 3.8.  The surgeon today said this is not the norm, but certainly a possibility, that you could have a negative ihc and then a 3.8 FISH score.  However the surgeon today said this has happened a few times in the past couple of months and now they are worried about it possibly being a quality issue. 

The surgeon is talking with the medical oncologist about options (retesting the FISH elsewhere), or doing oncotype testing.   I feel confident that they will be able to figure this out, but for now, I'm incredibly anxious about what this could mean. I really don't want this to be misdiagnosed, either way. 

Has anyone else had this happen? How can I trust if they send it out for  a second test.....any advice for me?

Thanks so much,

Pam

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  • swimangel72
    swimangel72 Member Posts: 1,989
    edited March 2009

    Hi Pam - I'm so sorry you're feeling overwhelmed - it IS so much to learn at once and so emotionally difficult! My oncologist was shocked when he got my Fish report back showing I was Her2+++ because I was stage 1 and grade 1 (usually Her2+ cancers are at least a grade 2). So he sent it out to a second, separate laboratory - and it came back even higher at Her2++++. I trusted the second laboratory because it was totally separate from the first one. I also had Oncotype DX done - BEFORE he got the results of the Fish test. Usually Oncotype DX isn't approved for tumors that are already shown to be Her2+ because it's understood already that you will need chemo + Herceptin.  I'm still surprised that my insurance company paid for it - but it seems that if the onc fills out the proper paperwork, they'll pay. You'd THINK someone would have noticed that the Fish report never arrived, but that got lost somewhere. So I was lucky - because the Oncotype DX score was a 23 (low/moderate level of risk recurrence - 14%.) Still it wasn't until my onc saw the Fish report that he decided I had to get chemo and Herceptin. He was happy enough to let me go with just Arimidex before that.......but now that I've learned so much more about Oncotype DX - I think - even if my tumor didn't show up Her2+, I would have opted for chemo anyway with a score of 23.

    You have every right to feel distrusting and anxious - labs DO make mistakes - and oncologists sometimes aren't as aggressive in their treatment as they should be. If in doubt - get a second opinion with a new oncologist - and be sure that your tumor is tested at a totally different laboratory. Good luck - and let us know what happens!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2009

    Pam, a very disturbing situation, I'm sure.

    I'd totally be on these guys to have that tissue retested. 

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  • mattscot
    mattscot Member Posts: 69
    edited March 2009

    Pam,

    I have posted several times on this  a month or so ago ... similar thing happened in my case.. Her2 - on the core biopsy, IHC indeterminate, on the FISH 3.6 borderline positive.  I then had the Oncotype DX which came back HER2- (no borderline result) and a score of 16.  Oncotype testing is suggested in your case with borderline HER2 results.

    my Oncologist considers me to be HER- but still has me on the herceptin... I also did chemo- TCx4 -- 

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  • aris
    aris Member Posts: 124
    edited March 2009

    can I ask you why you are on herceptin if you are considered her2-? Is it because of the conflicting reports?

     My oncologist (who I haven't even met yet) is talking with the my surgeon about either or both oncotype dx as well as having the tissue retested at another lab.  It is all so overwhelming to me and scary because this isn't something to be wrong about.

     thanks for your input. It really helps to know I'm not the only  one who has had this type of conflicting report.

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