Her2+... after Oncotype told Her2- ???

Options
mommymac
mommymac Member Posts: 13
edited June 2014 in HER2+ (Positive) Breast Cancer
Her2+... after Oncotype told Her2- ???
· Share on FacebookShare on Twitter

Comments

  • mommymac
    mommymac Member Posts: 13
    edited November 2009

    After initial pathology from mastectomy I was told I was Her2+.  Had OncotypeDx test done only because ins. said they would cover entire cost.  Results just came back saying I'm Her2- AND PR+ not PR-. Just curious if anyone has ever heard of such a thing?  Dr. said he has never seen it before and that they will just treat me as Her2+.  I start TCH on Monday.  Just would really like an accurate answer but according to Dr., doesn't look like I will get one.  I did read somewhere that OncotypeDx trumps Fish results???  Anyone have any info on that?

    Thanks... 

    · Share on FacebookShare on Twitter
  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited November 2009

    I think I would get a second opinion.  Did you get a high oncotype score ??

    · Share on FacebookShare on Twitter
  • LJ13-2
    LJ13-2 Member Posts: 235
    edited November 2009

    God yes. This has "second opinion" written ALL over it.

    Please send the slides to a NCI-designated cancer center to have them read properly.

    · Share on FacebookShare on Twitter
  • mattscot
    mattscot Member Posts: 69
    edited November 2009

    Same story happened to me last year this time.  My oncotype was 16 fairly low (in part because of the neg Her 2.  Per my onc with an agreement from Sloan Ketter  they think I am probably Her neg but treated me with the TCH .  I wish I had the FISH redone I think it is a subjective test unlike the oncotype.  I was also advised that the oncotype will trump the FISH but we are not there yet.  What was your oncotype score?? 

    · Share on FacebookShare on Twitter
  • mommymac
    mommymac Member Posts: 13
    edited November 2009

    Oncotype came back 30. My risk recurrence was 20% with Tamoxifen alone. 

    I was at Mayo last Monday (this was my 2nd opinion), the Dr. basically said the results were inconclusive and didn't know if more testing could be done???  As if this all isn't overwhelming to begin with now this happens.  Like I said before, I'm scheduled to start treatment (TCH) at Mayo on Monday.  I thought about contact Genomic Health directly and seeing what they might say.  Arrgh...  SO frustrating.

    · Share on FacebookShare on Twitter
  • mattscot
    mattscot Member Posts: 69
    edited November 2009

    Mommymac I recall I was discouraged from having further testing by Sloan Kettering. I had a couple of issues that were odd the  Her2 status and I have a pleomorphic grade of ILC which in older journals found to be a high risk indicator. Your Oncotype is at a higher leval which would indicate chemo makes sense could your Drs indicate why that was?  Your age may be a factor.   Like I said before I did the chemo and the herceptin (the same type you are scheduled for it was extremely doable.  I did not miss a day of work ( I am  also a single mom with two kids   at the time of treatment 10 and 12 -- ) The worst of it was losing my hair (I had a very hard time with the transition and wearing the wig)  Note if you have doubts reschedule your chemo for another week because one treatment will dx your hair.

      My final conclusion for me was that Herceptin is a good thing even if I was Her- and I was going to do all it took for my kids.  Good luck

    · Share on FacebookShare on Twitter
  • bjsvaughn
    bjsvaughn Member Posts: 7
    edited November 2009

    I had exactly the same thing happen. Fish was positive and the oncotype negative and then they did a third test and ti was positive.. pretty hefty drug to thrust one someone for a test that is eyeballed!  Yes I too am receiving Herceptin and NOT happy about it.

    · Share on FacebookShare on Twitter

Categories