HER2 equivocal

Options
Triciaski
Triciaski Member Posts: 145
edited June 2014 in HER2+ (Positive) Breast Cancer

Was anyone else's HER2 equivocal? Mine is on both IHC and FISH, and it's in the range that is not eligible for herceptin to be covered by insurance. At first I thought it was good that at least it was not positive, but now I understand that the test is not black and white but a continuum, and I'm concerned that I will miss out on the most effective treatment. My doc has ordered another FISH test on a different tumor sample, but he says even if that comes back negative, that doesn't erase the fact of 1.8 on the initial test.

Has anyone else had this experience? What was done to resolve the equivocal issue and/or receive herceptin with a FISH of 1.8 or 1.9? Thanks for any enlightenment.

Tricia

· Share on FacebookShare on Twitter

Comments

  • mattscot
    mattscot Member Posts: 69
    edited January 2009

       I would suggest you request an Oncototype test  --the Oncotype  as of September 2008 includes Her2 testing -- it uses a different test to test Her2 based on RNA anaylisis -- and I think will eventually trump the FISH.  I was told that the FISH is now what is relied on.. 

     My original biopsy was HER- my pathology was ICH borderline 2+ equivocal, 2.3 on FISH  which is considered positive by 1 point and then to my surprise and my doctor's-- HER negative on the oncotype (and a lowish score of 16 because of HER2 negative ) 

    The issue of whether Herceptin benefits HER- cases is not clear at this time.  My doctor made the case that it does ... and that Herceptin is taken with a course of chemo to be effective.    I am mid chemo of 4x TC  plus Herceptin and in the throes of second guessing the chemo -- herceptin is certainly easier with almost no side effects.

     So I would follow up with him on this point. . 

    · Share on FacebookShare on Twitter
  • flyrzfan
    flyrzfan Member Posts: 557
    edited January 2009

    Tricia ~ I don't have any doubt about my status but when I read mattscot's comment "herceptin is certainly easier with almost no side effects" I wanted to post the caveat "for most people". There are TONS of side effects, it just depends on how your body reacts. There are threads here on BCO and on the HER2 board detailing some of the horrible side effects women have. I personally am having a harder time with Herceptin every 3 weeks than I did with either of my chemo's.

    I agree with the Oconotype suggestion though, because you don't want to take something you don't need and you don't want to NOT take something you DO need.

    I hope you can get the test, and I hope you are ultimately negative...best wishes

    · Share on FacebookShare on Twitter
  • ChrisBern
    ChrisBern Member Posts: 33
    edited January 2009

    Hi Tricia,

     I'm very happy to have found you because our story are about the same.

     Here is mine:

    I'm a man of 31 diagnosed November 13th with a BC very similar to the one you have.

    I received two days ago the result of my second HER2 FISH test and the result was exactly the same than the first one: 1.8. So, I'm at the begginning of the equivocal class which ranges from 1.8 to 2.2. Prior to the FISH test, the IHC test said: equivocal result - although likely negative, FISH test to follow. My ONC. is confused and said he needs to discuss with experts about my case because he doesn't really know what to do. General guidelines that I found on the Web are saying that patients with score equals or superior to 2 are eligible to Herceptin.

    I personnaly would like to skip Herceptin because heart SE scares me (in complement of
    AC-T chemo). On the other side, I want to do everything that is possible to become cancer free.

    I propose to stay in touch to inform each other regarding Herceptin recommendations we will receive and decisions we will take.

    Christian

    · Share on FacebookShare on Twitter
  • Triciaski
    Triciaski Member Posts: 145
    edited January 2009

    Christian,

    Thanks for responding with your similar situation. I will keep you posted on what happens to me. I would like to skip the Herceptin and all the chemo actually -- but, if we do have HER+ tumors, the prognosis is much better with Herceptin.

    There are so many variables in this cancer business that I feel as though I've learned a foreign language. The forums are a blessing in not feeling so alone with all these complicated dilemmas.

    Tricia

    · Share on FacebookShare on Twitter
  • ChrisBern
    ChrisBern Member Posts: 33
    edited January 2009

    Hi Tricia,

    I decided to order the Oncotype DX test. I will have the result in about 10 days. Then, depending of the results, I will take a decision regarding Herceptin.

    Any news from your side? How do you feel?

    Christian

    · Share on FacebookShare on Twitter
  • ChrisBern
    ChrisBern Member Posts: 33
    edited January 2009

    Hi Tricia,

    It is me again. Just met my ONC yesterday for third tx and he told me that with a score of 1.8, he will not give me Herceptin. After talking to some HER2 experts in Atlanta, he told me that you need at least to have a score of 2 on FISH test to receive Herceptin.

    But, since I ordered Oncotype DX test last week - which use a different HER2 test - my ONC said he will wait for the Oncotype HER2 result before giving me a final answer regarding Herceptin.

     What's happening on your side?

    Have a nice day!

    Christian

    · Share on FacebookShare on Twitter
  • Triciaski
    Triciaski Member Posts: 145
    edited January 2009

    Hi, Christian,

    I have an appointment tomorrow to get the results of my second FISH test on a different tumor sample. (It's taking a long time.) So, nothing new to report. I've been able to pretty much put it out of my mind while I wait for more information. I will post again tomorrow when I get the results and find out what my onco has to say.  

    Tricia

    · Share on FacebookShare on Twitter
  • 07rescue
    07rescue Member Posts: 168
    edited January 2009

    Hi Tricia and Christian

    I too have HER2 positive by IHC, and equivocal by Oncotype Dx, no FISH done. The Oncotype is regarded as the most accurate of all three tests. I decided to go with the Herceptin because my tumor was a grade 3, and because every member of my family has died from a cancer in the HER2 "family" of cancers rendered more aggressive by it's overexpression - breast, ovarian, gastric, and lung cancers. I ran across this article a little while ago and found it interesting, sothought you might also. The author says an intermediate HER2 score is linked to with polysomy of c17,w hich can obscure the test interpretation. An intermediate score is associated with an intermediate risk of recurrence, i.e., it falls between a HER2- and HER2+ in risk. They don't yet know how much Herceptin will help someone with an intermediate score. I was impressed with some of the early indications that even HER2- patients may benefit from Herceptin, perhaps not quite as much as HER2+ patients, but enough to warrant the side effects and cost, in some cases at least. I'm sure that's good news to Astra Zeneca, the manufacturer, but if it turns out to be true it may be good news for all of us. Of course, there needs to be proof that Herceptin confers a significant benefit before insurance will pay for it. So often what insurance will pay for determines treatment, not what is best for the patient.

    http://www.oncologystat.com/journals/journal_scans/Polysomy_17_in_Breast_Cancer_Clinicopathologic_Significance_and_Impact_on_HER2_Testing.html
    · Share on FacebookShare on Twitter
  • Triciaski
    Triciaski Member Posts: 145
    edited January 2009

    07 -- You are so right that we get what insurance will pay for rather than what might be best in the long run for our own individual treatment.

    Thank you SO much for the interesting article. It's good to see that some research is being done on intermediate and equivocal HER2 scores. In my case, it's been very disturbing to fall into a gray area with no clear treatment options. (Being at the low end of equivocal makes me ineligible insurance-wise for Herceptin.) The following paragraph, which suggests that polysomy 17 is a different characteristic that seems to affect HER2 scores, is particularly encouraging:

    The findings of this study show that polysomy 17 is associated with HER2-equivocal FISH test results. In addition, polysomy 17 breast tumors are clinically and pathologically distinct from HER2-positive breast cancers. Polysomy 17 is not directly indicative of HER2 overexpression.

    My second HER2 test on a sample from the tumor removed during surgery (rather than on the core biopsy) came out equivocal again on IHC and then 1.5 on FISH, still somewhat borderline but below the range of equivocal (so my onco is now considering me negative). It will be interesting to follow the research on polysomy 17, because on first look, it certainly seems as though my tumor might fall into that category. It would be wonderful to get the HER2 equivocal cleared up for future BC patients. I hope my onco won't be offended, but I'm going to print out this article for him. (Hopefully, though, he has already seen it.)

    Tricia

    · Share on FacebookShare on Twitter
  • 07rescue
    07rescue Member Posts: 168
    edited February 2009

    Tricia, I am hoping Astra Zeneca will be willing to conduct further clinical trials to see whether Herceptin really could play a meaningful role for HER2 intermediate expression and even HER2- breast cancer patients in preventing recurrence. I will keep my eyes open for such a trial. Many of us who's insurance will not cover Herceptin due to lack of evidence might have a chance to get the treatment through such a clinical trial. We need to see whether it will help enough to be worthwhile in terms of side effects and complications.

    It's so difficult to make a decision and to be in a gray area, I totally relate. Please keep us posted on what your oncologist recommends, and what you decide to do. I am so far at peace with my decision to do TCH, but will reevaluate as the course of treatment and side effects progress.  

    · Share on FacebookShare on Twitter
  • ChrisBern
    ChrisBern Member Posts: 33
    edited February 2009

    Hi Tricia,

     I had the result yesterday of my Oncotype test. For HER2, my score is 9.3 which means negative. The equivocal class ranges from 10.7 to 11.4. So, I will definitely not take Herceptin. I will however complete my chemo tx (4 AC + 4 T DD).

    Take care,

    Christian

    · Share on FacebookShare on Twitter
  • Triciaski
    Triciaski Member Posts: 145
    edited February 2009

    Hi, Christian,

    My second FISH test came back negative at 1.5, and my Her2 is negative also on the Oncotype Dx (9.8).

    My recurrence score on the Oncotype is 17, which is in the low range, so I won't be doing chemo, but because I'm ER+, I will be doing Arimidex.

    What was your Oncotype recurrence score, if you don't mind me asking?

    Tricia

    · Share on FacebookShare on Twitter
  • cookie2009
    cookie2009 Member Posts: 36
    edited February 2010

    Hi, Everyone

    Can anyone tell why I am her2 positive and yet it says equivocal. That is next to 1.8 and 2.2. How do you know your her 2 + sore. It is not on my pathology report.

    Cookie

    · Share on FacebookShare on Twitter
  • Nightnurse
    Nightnurse Member Posts: 86
    edited July 2012

    I had an initial test of HER2 negative, then the FISH analysis was equivocal.  My oncologist is now sending another specimen for AQUA testing.  It is supposed to be more accurate and results are either negative or positive.  I was turned down by the insurance company also for Herceptin because of the equivocal results.  Hopefully, this newer test will end the uncertainty.  If it is a medication that will help me, I want to get it.  I don't want an insurance company telling me that I can't have it.  I am currently awaiting results of the AQUA test.

    · Share on FacebookShare on Twitter

Categories