Oncotype Dx Test Anyone?

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  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited December 2013

    Hi Momand2kids - I remember in September when I was diagnosed thinking to myself, "Well, at least this didn't crap up the summer."  Get a load of this...  Genomic called to say my report would be in on the 23rd, a day early and then by the 24th they told me & my Onc that there was a problem with the "quality controls" and the report would be delayed and for how long they did not know.  Unbelievable.  I have no idea what to make of that but in the end I hope they get it right.  And soooo, the waiting continues.  If chemo is in my future, I do have quite a nice collection of winter hats.    I do hope your Christmas this year was a really good one.

  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited December 2013

    Hi, warrior woman.  My oncotype test was delayed because the first tissue sample sent didn't have enough carcinoma in it.  I was so livid. My surgery was on on 2/18 and had to wait til 4/4 for my results...then the results were in the dreaded gray zone to boot.  

    MsP

  • cookiegal
    cookiegal Member Posts: 3,296
    edited December 2013

    warrior woman, here is some food for thought, the people who the oncotype may not hold true for may be the ones with higher KI67. There is a study on that, I posted it somewhere a few years ago.

    I actually paid the 25 bucks to read it.

    I had a 22 and passed on chemo, I felt looking at the node positive chart, that there was no real chemo benefit under 21.5.

    That being said another 22 (node positive) would be justified in doing it.

    So for that sliver, it wasn't for me.

    I could be wrong, but with the ki67 at 40, I don't think you will get a clear no chemo, but I hope I am wrong.

    I honestly think in the grey if you told your onc you flipped a coin, they would be...ok

  • lisa2012
    lisa2012 Member Posts: 652
    edited December 2013

    Oh, Oncotype... I waited for mine and then after 10 days they said they hadn't gotten a good slice of my tumor with the biopsy, so the hospital had to send them another bit of the refrigerated bit that was left. So it took about 3 weeks, while I was recovering from the BMX. My score was 38, so I did chemo. I thought I was a strong hale and hearty person too.. and worked 3 days before I collapsed. Stayed home for the rest of my TC infusions. Sometimes how you think it will be is not how it is. But here I am, 1.5 years later, being a busy principal and feeling pretty good!

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited December 2013

    MsP and lisa - That is a looong time to wait.  I assume most of us just want to get the whole mess behind us and each delay drags out the entire ordeal.  I appreciate your stories as it eases my mind knowing my case is not a bizarre isolated incident.

    Cookiegal - The ki67 stuff makes me crazy.  The research is all over the place from what I've read so far and it really is the most concerning of my report data for me.  It only appears on my initial biopsy report and my onc thinks it doesn't fit with my profile.  My oncological surgeon gives it no merit.  Another surgeon said size trumps ki67.  Some articles say it does correlate with oncotype score while Genomic's website shows it as only one factor of many but not a determinant.  I would like to believe that if there is strong evidence that Oncotype scores don't apply with high ki67 that the high ki67 folks would be eliminated from oncotype testing.  I will look to see if I can find your post.  Would you clarify - " I had a 22 and passed on chemo, I felt looking at the node positive chart, that there was no real chemo benefit under 21.5."  I thought the test was only for node negative and node positive automatically got chemo?  I'm trying to determine in advance my cut off.  Even the high end of the low RS score still have an uncomfortably high RS rate in my mind.        

  • ALittleBitBritish
    ALittleBitBritish Member Posts: 627
    edited December 2013

    Warrior woman, you can have the oncotype test with positive nodes, folk often think you cannot - but you can. The report comes back with two stats, with no nodes and with positive nodes.

    1-3 I think was the rule. I had it and my score was a 9. So I wasn't going to do chemo.

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited December 2013

    ALittleBitB - Thanks for the clarification.  I certainly don't want to post misinformation.

  • momand2kids
    momand2kids Member Posts: 1,508
    edited December 2013

    WW

    sorry about the delay-but this is one place where you really want the true information--so whatever it takes... hopefully that means that you won't need chemo..... but I know the waiting is insane--I remember having to wait from my surgery )11/25) to 1/7 to find out---but I had a feeling I would need chemo--- I had already convinced myself, so by the time I was presented with gray area results, I had already talked to the wig salon, and mentally prepared myself (so I thought)..... 

    hope you also had a  good holiday!! 

  • cookiegal
    cookiegal Member Posts: 3,296
    edited December 2013

    node positives have been getting oncotype since 2009 when I was treated

    the only downside is the basis study is MUCH smaller, or it was

    The study I referred to suggested (and again this was 2009) that the people with low oncotypes who did get mets may have been the ones with higher ki67

    If your docs are saying it isn't a concern, well then, they are a lot more up to date than me

    in answer to the question why, the score is another piece of information about how beneficial chemo may be, when you get the report you will see it breaks down a lot of factors

    here is the best advice I have, MAKE SURE YOU ASK FOR THE REPORT

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited December 2013

    http://www.swog.org/Visitors/S1007/patients.asp


    Regarding those who are node positive...There's a clinical trial....

  • edwards750
    edwards750 Member Posts: 3,761
    edited December 2013

    Boy can I relate to your anxiety about the "waiting period" to get the Oncotype test results. I was Stage 1, Grade 1 until after my lumpectomy the Path report showed a micromet in my SN. My BS said that would get me chemo. Not true. It is no automatic anymore. My ONC ordered the Oncotype test. Genomic Labs got approval from BCBS for insurance coverage. A few years ago when I had it done the test was around $5k. I have read it is less than that now and Genomic Labs will work with you if insurance won't cover it and you have to pay out of pocket. Anyway, my BS' office said 10-14 days before the results came back. I can tell you with absolute certainty that time period seemed like an eternity. I cant tell you how many times my BP spiked when the phone rang. Waiting for test results were more agonizing for me than the actual DX process. Anyway I got THE call the day before I was scheduled to meet with my Oncologist. I remember checking the caller id and shaking. I know chemo isn't the end of the world but lets get real no one wants to go through it. My BS needs work in the bedside manner department so I was relieved it was his nurse calling and the first thing she said was...good news and I relaxed and cried. The report was better than I hoped for and my score came back at 11. Great weight lifted to be sure. I am thankful my ONC ordered the test. She said she was ambivalent about my treatment. She also said the test afforded them more information to prevent overtreatment of patients which she admitted has been the case. So good luck with your results. Whatever they are you will get through it - we will help you. Diane


  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited December 2013

    Cookiegal - I did read the article about the high ki67s being that 7% and I expect my final ki67 will be a huge determinant if I am borderline.  As I write this I cannot believe all I have learned about BC in a short amount of time.  Sheesh!

    And then there is the discussion about how almost all BCs have metastasized regardless of other factors.  Ugh!  Something else to make me insane.

    Diane - I waited almost 3 months from diagnosis to surgery and now it's been 3 weeks since surgery and no oncotype results yet.  Surely this is a conspiracy to drive me nuts.  Regardless of the results, I do expect to be far less anxious when I know where this is going and have more information about my own cancer.   

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited December 2013

    Voraciousre - Just want to mention that in the short time I've been on here I've read many of your posts and want to say - Thank you!  I am learning a lot!

  • cookiegal
    cookiegal Member Posts: 3,296
    edited December 2013

    I used to say it would all be very interesting if it wasn't happening to me.

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited December 2013

    I remember the first time I logged onto this site, Cookiegal.  I thought it was written in a foreign language.  Funny how I am now able to make sense of many oncology articles.  And oh yes, the new estimated date for my Oncotype score is 1/2.  Happy New Year.  

  • Golden01
    Golden01 Member Posts: 916
    edited December 2013

    Does anyone know when the results of the TAILORx trial will be out? I would have gotten chemo if I'd been able to be in the trial (Oncotype 27), did not after a second opinion consultation at an NCI cancer research center and careful consideration. I remember sorting out all the info as hard and the waiting for results even harder. For some reason,  my BS didn't order the test but I had to wait until I saw the oncologist and he really pushed on whether I'd consider chemo or not before he would order the test. Seemed silly to me at the time as how could I make a decision on chemo without the Oncotype results? 

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited December 2013

    Golden - If I am correct Taylor X will be in 2015.  What concerns me is possible reclassification of the intermediates and new recommendations for chemo.  I'd hate to make a decision and later learn that it was the wrong decision.  My surgeon waited until the final pathology report was in before ordering the Oncotype.  I think they hesitate because of the expense.  In your situation I am just not sure.

  • lekker
    lekker Member Posts: 594
    edited December 2013

    Golden - in general, doctors will only order tests that will inform treatment decisions.  If your doctor felt that you would refuse or demand chemo regardless of your score, there would be no reason to order the test.  He/she should've explained that to you when "pushing" you about whether or not you'd consider chemo before you had all of the information.  Warrior Woman - I've been following your story. I'm sorry your results were delayed.  Here's to good news in 2014!

  • Golden01
    Golden01 Member Posts: 916
    edited December 2013

    My MO concern about ordering the Oncotype absolutely was related to cost. He was clear that if I had already made my mind up against chemo, the test was unnecessary. I know that I made the best decision for me based on the info we had at the time. I wish the TailorX results were coming sooner to help women today who are in the same boat I was in two years ago. 

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited December 2013

    I am quite guilty of thinking ahead and trying to figure out every possible scenario.  I need to get better at waiting until I have all the information including my doctor's recommendations before planning out my life.  I actually purchased scarves for my hair loss a few days after my initial diagnosis.  That was 3.5 months ago.  

    Lekker - Thanks for your encouragement.

    Golden - Let's hope the Taylor X demonstrates that we all made great decisions.

  • cookiegal
    cookiegal Member Posts: 3,296
    edited December 2013

    That is exactly what happened to me.

    Seriously my last words before surgery were, Order the Oncotype.

    (actually they were, oh you are from Edina, MN...but you get the idea)

    Because I had a pos node the surgeon did not do that.

    Oncologist did.

    Surgeons are not oncologists.

    Warrior Woman, you made the best decision you could with the info at the time. Science progresses, but don't beat yourself up no matter what. (Easier said than done I know, I want my freaking nodes back.)

    I would suspect that the intermediate range will get higher.

    For ER+ cancer that is the way the science is moving.

    As my onc said, you are not going to see a study saying chemo has more of a benefit than we thought.

  • cookiegal
    cookiegal Member Posts: 3,296
    edited December 2013

    Golden, I have the feeling that if you have a less "garden variety" tumor, the oncotype is not as useful, because there are few women in the group with the same cancer. So I am glad you got that second opinion.

  • cookiegal
    cookiegal Member Posts: 3,296
    edited December 2013

    I am going to mention again to ask for the report when you get your test result. You get to see all the components that make up the score. Plus you get charts with the error range.

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited December 2013

    And they moved the results date from Thurs. to Friday.  However, I had a long discussion with my Onc.  At the point where I can derive a 3% or better disease free survival with chemo. I will do it.  This most likely means chemo for me but I will wait to see the entire report.  

    Cookiegal - "I would suspect that the intermediate range will get higher. For ER+ cancer that is the way the science is moving.  As my onc said, you are not going to see a study saying chemo has more of a benefit than we thought."  Can you explain this?  I am confused by the Taylor X study examining the 12-25 range.  I assumed the intermediate range may be adjusted lower.  

  • cookiegal
    cookiegal Member Posts: 3,296
    edited December 2013

    Again I am 4 years out....I could be out of date, but my understanding is "low" has move up over time from 14 to 18....meaning more women are not getting chemo... 

    Maybe the same thing will happen on the other end...some women will move into high.

    I would think data would move women out of the grey zone...but maybe I am wrong.

  • cookiegal
    cookiegal Member Posts: 3,296
    edited December 2013

    I think I have a better explanation, tailor x is a 10 year trial I think? When it started, 12's might have been in a more grey zone. I think...maybe I am out of date. Don't want to be confusing people.

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited December 2013

    My onc said that regardless of where Genomic draws the magical line, the important thing to look at is where the risk begins to separate from the benefit and that I believe is well below the 17/18 divider.  The bottom line is that I hope when Taylor X is complete that we're all happy with our decisions....no regrets!  And I really hope you're right, Cookiegal.

  • cookiegal
    cookiegal Member Posts: 3,296
    edited December 2013

    When you look at the chart there is the line, and the two dashed margins of error on either side. So that could account for some differing interpretations.

    Plus I was node positive, and that chart was based on a much much smaller study, so the numbers are a little bit different.

    (Though for nodes 1-3 the difference is small, on the lower end close to the margin of error.)

    But I would be shocked if on he lower end more women went from lows to intermediates....perhaps more highs as well.

    You would think the study would trim down the numbers of, what the heck, flip a coin.

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited December 2013

    warrior...The purpose for lowering the range that will  randomly be receiving chemo in the TailorX study was to "see" where the benefit of chemo occurs.  So, if you had a hundred patients who had a 12 score with 50 getting chemo and the other 50 not receiving chemo and all did well...then we would conclusively know  that for low scores of 12 there is no need for chemo.  Now, as the other scores are randomized, we will hopefully know' as we approach the 18- 25 scores where chemo finally does help.  Then, we will be able to get more patients out of the dreaded "intermediate" zone.  The bottom line for now is that until we get the TailorX results, too many intermediate range sisters cannot know whether chemo will benefit them.  Likewise, based on the current Oncotype scores below 18, there is little or no benefit of doing chemo.  Another interesting point is that many patients like myself are anxiously waiting the results of the SOFT trial. The patients who are participating in the SOFT trial are at low risk of recurrence.  The early word coming out of the trial is that there have been fewer recurrences than what they expected.  It seems reasonable to think that once TailorX is reported, there might be fewer recurrences as well and that might be good news as well. Maybe many more intermediate  patients will find themselves pushed into the low OncotypeDX range.  Now that would be very good news!

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited December 2013

    Voracious and Cookie - Thank you for helping me to make sense of this.  I get it now with the Taylor X.  I was interpreting it in the opposite of how it is designed.  I really wish the study would be completed tomorrow!  :)

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