TAILORX trial results Monday, September 28

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  • NormaJean65
    NormaJean65 Member Posts: 234
    edited April 2016

    After reading the posts here I have concluded I am doomed to die regardless of what I do or don't do since on my OncotypeDX the breast score was 100. I have yet to fine anyone that even comes close to that even after all these years. If there is anyone like myself that is just reading & not posting I would love to hear from you.....PM me.
  • lekker
    lekker Member Posts: 594
    edited April 2016

    Normajean - according to your signature, you're HER2 positive so the oncotypedx recurrence risk doesn't actually compute. Oncotypedx is only clinically validated for HER2 negative tumors. Sometimes initial testing shows a tumor as HER2 negative so it's sent out for oncotypedx testing, which later reveals over expression of HER2. It looks like you're already almost 6 years past diagnosis which is fantastic!

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited April 2016

    norma...what lekker said is correct. The OncotypeDX measurement doesn't apply to you since you are Her 2 Positive. And, since you are six years out, that is a reason to celebrate! Don't let your cancer diagnosis battle you. Don't look in the review mirror. Instead, look ahead as each new season unfolds and be a part of it! If you are still feeling overwhelmed, then perhaps share your feelings with your medical team and let them try to help you get on the path that you deserve!


    👩❤️👩

  • NormaJean65
    NormaJean65 Member Posts: 234
    edited April 2016

    Thanks for the info you posted Lekker & voraciousreader. I can only tell you what was told to me by the onco. He initially (given the pathology report) wanted to "see" if I might be able to NOT do chemo. But given that I was a Grade 3 and the OncotypeDX breast score was so high we had to pursue with T & C with 52 wks of Herceptin. I have often visits referred back to the high breast score but he always directs his attention to the percentages with and without the Tamoxifen. So that added into the decision to have the unaffected breast removed and a hysterectomy 18 months later.

    Well now, you have given me something to ask about next visit. I never was told or had ever heard that HERS2 + as opposed to HERS2 - made any difference in the OncotypeDX. In fact, I was told it was an addition factor that made it more serious. Voracioureader what kind of blood test gave you your percentages of ER/PR? I have always wondered what mine was at the time and what they might be now after years of hormonal therapy.

    Thank you both very much. You are awesome!!!

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited April 2016

    Norma...let me bgin by saying, there seems to be some confusion here...First off, patients ho are HER 2 positive are not eligible for the Oncotype DX test. Furthermore, patients must also be ER positive. Now, the biopsy report and surgical report will give you info with respect to the percentage of ER and PR...or lack of. The reports will also identify if it is HER 2 Positive or Negative. Sometimes, the HER is borderline. In that case, it might require more pathology testing, OR, if it is ER Positive,it can be sent for the Oncotype DX examination which might be able to determine whether it is HER positive or negative. With respect to ER and PR, my surgical pathology report determined the percentage. The Oncotype DX test also measured my ER and PR status, but the figure was measured in a range and not a percentage.


    That said, your physician probably asked for the OncotypeDX test because your HER 2 status was borderline from the pathology testing. Confirming you were HER 2 Positive, you were then offered chemo and herceptin. The Oncotype DX test also confirmed that you were ER positive and that is why your oncologist told you that Tamoxifen would also be part of your protocol. The Oncotype DX recurrence score also explains by what percentage you would improve your chances of recurrence if you take Tamoxifen.


    Now....with respect to removing your other breast...the OncotyypeDX test does not address your chances of another breast cancer in your unaffected breast....so....I don't understand why removing your other breast was warranted. Many women are under the mistaken belief that removing the unaffected breast will increase survival. That, unfortunately is not true. Many women are choosing to remove the healthy breast because they may no longer want mammograms because prior mammos might have missed their cancer or, because they might get better symmetry by reconstructing both breasts.


    Rest assured that if other sisters who were HER 2 Positive had the OncotypeDX test, their scores might also be 100. But, as lekker said, you have HD targeted therapy and have been extremely aggressive in your treatment. With six years now behind you since diagnosis, you should look forward to doing well!

  • NormaJean65
    NormaJean65 Member Posts: 234
    edited April 2016

    voraciousreader, my goodness I am truly & sincerely impressed with your knowledge base. Now, to address some of the points made in your post, I do not have the pathology report from the biopsy (don't know how I dropped the ball on that one b/c I ask for a copy of everything) and the surgical report on the Immunochistochemical stains only refers back to the biopsy. It does state ER+ PR- Her-2 over expression : positive along with Ki-67High. The Oncotype address Porgnosis for node negative, ER+ pts. I quote "The Clinical Validation study included female patients with Stage I or II, Node Negative, ER + breast cancer treated w/ 5 yrs. of Tamoxifen. Those patients who had a Recurrence Score of > 50 had an Average Rate of Distant Reocurrence of 34%." On the last page there are three bar graphs. ER Score 7.4 Positive (that put me on the low end of +), next PR Score < 3.2 negative (this put me nearly at the - end of the bar) and Her2 Score >13.0 Positive (this is nearly at the far end of the bar).

    Here is another question, on one of these broads under the OncotypeDX I read that one of the sisters was concerned her specimen wasn't large enough so she called Genomic and was told it should be 2.5cm her's was not quite that at 2. something. After doing the needle core biopsy, then the slicing & dicing of a tumor a total size of 1.1cm x 1.0cm x 0.6cm how in the world was there enough remaining to be sent to Genomic?? Only 0.7cm of the total of 1.1cm tumor was outside the duct equalling 40% of the tumor was invasive.

    Next, I had the second mastectomy & hysterectomy done as a personal choice. Frankly, I decided I would rather look at a flat chest than when looking in the mirror having a reminder of what use to be. I know, I am a crazy old lady. I was willing to do recon but the BS oooops did a simple mx instead of the skin sparing that was done on the effected side 18 mons prior. At least I am (and was) thrilled that there was no sentinel node or lymph node involvement, therefore I was spared Rads (not sure I would have agreed to it anyway).

    So there you are. I will be calling about the biopsy pathology report not that it will change a thing. At this point, it is water under the bridge so to speak and frankly, I have put it in God's hands. He knows when it's my time to be called home.

    Hope you had a great weekend. It was beautiful here, 79 degrees, breezy and no humidity to make it sticky. Thank you for your time in posting.

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited April 2016

    norma...sorry for all the typos in my previous post...I was in a hurry...but wanted to clarify some points....


    I wish you continued good health and much happiness!

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