I think Oncotype DX is a SCAM!!

24

Comments

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited September 2011

    And TN tumors historically are more aggressive.

  • MaryNY
    MaryNY Member Posts: 1,584
    edited September 2011

    The way I see it -- cancer grade is one predictive tool, Oncotype DX is a separate predictive tool. They look at different characteristics of the tumor to make their predictions so they don't necessarily overlap.

  • Kay_G
    Kay_G Member Posts: 3,345
    edited September 2011

    Thanks for the info.  I'm still trying to understand all this.  So are hormonals always recommended for ER+ then? 

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited September 2011

    Yes. If a tumor is ER+ then you are a candidate fir endocrine therapy.

  • MaryNY
    MaryNY Member Posts: 1,584
    edited September 2011

    Kay: about the comment you made above about triple negative bc. Those women would not be given hormonal therapy. The Oncotype DX test presumes that the women tested will be given hormonal therapy and the predicted recurrence rate is based on that assumption -- so no, it doesn't apply to triple negative bc.

    I think hormonals are almost always recommended for ER+ bc unless there are medical reasons for not using them or their use is not well-tolerated by the patient.

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited September 2011

    I won't pretend to know a lot about the oncotype test but my thinking has been along the same lines as MaryNY. Grade/aggressiveness is but one aspect of the tumor. In and of itself, it may not be the only factor in determining the potential effectiveness of chemo. Other tumor characteristics may play a role in the efficacy of chemo. I think that this is quite an advance in that tumors are being analyzed for their particular characteristics rather just grade/size which seems somewhat limiting.

    TN's do not respond to hormonals as others have stated, so oncotype, which assumes use of hormonals currently has no value for them. Very interesting discussion!

    Caryn

  • LtotheK
    LtotheK Member Posts: 2,095
    edited September 2011

    My understanding, though I could be off base, is that grade is a somewhat outmoded, or at least limited, interpretive factor.  What Oncotype shows, for instance, is not all grade 3 cancers are aggressive.  Yes, a lot of grade 3 tumors have high Oncotype scores.  Mine miraculously didn't.  It is a finer point on a more general category of grade.

    Different hospitals consider it in different ways.  One of my three opinions said it trumps all.  Another said it was just one predictive factor.

    For me, it was a miracle.  It gave me hope and it helped make my decision about chemo, which is what it is supposed to do.  It is one of the major breakthroughs in cancer care, and one of the few real changes to take place in BC treatment in a long while.  I for one am incredibly grateful for it, despite obvious limitations.

  • peppopat
    peppopat Member Posts: 90
    edited September 2011

    LtotheK writes:

    "What Oncotype shows, for instance, is not all grade 3 cancers are aggressive.  Yes, a lot of grade 3 tumors have high Oncotype scores.  Mine miraculously didn't. "

     Let  me see a  show of  hands:

    Well, then, for  all of  you  that rely  so  heavily on what  Onco  says  about their  low  score, would you decide to  pass up  chemo if all your  other  pathology  reports  indicated a  poor  prog  score ?   I'm  going to be  passing on chemo despite a 28  onco  because  all my other pathology  reportsd indicate low grade. I   have to go  with  majority.

    I'd  rather pass on chemo  with a very  low  Grade   and   med high onco  than  to  pass on  chemo with the highest grade  and  low onco.

  • LtotheK
    LtotheK Member Posts: 2,095
    edited September 2011

    I had a grade 3, and a 12 Oncotype.  I sought three opinions.  Given the fact that I was 39 at diagnosis, and the Oncotype is not well tested in the young population, I said YES to chemo.  There is some discussion that chemo doesn't work in the grade 1 environment.  I have a friend who did chemo with a grade 1, and a 32 Oncotype.  "Going with majority"--not sure I totally understand what you mean precisely, but the point is, a low grade can also have a high chance of return.

    Whether chemo works in that environment is another story.  There is still hugely a crap shoot aspect to all of this.  I can say a combination of Oncotype 28 and node-positive would be two reasons to recommend chemo at my hospital.  

    I think the harder thing for all of us to accept is that there isn't "right" answers when balancing a number of factors.  It's still relatively primitive science in terms of treatment options.  I kind of can't believe in the 21st C the way to treat a cancer is to strip as much of a hormone as possible from the body or to blast all of a certain type of body cell, including good ones, with liquid chemicals.

  • MaryNY
    MaryNY Member Posts: 1,584
    edited September 2011

    I'm not sure if anyone relies heavily on the results of the Oncotype DX test. For most, it seems to be just another tool to help in making the decision about chemo.

    My Oncotype score was 18. If I wasn't node-positive, I might have considered foregoing chemo, but with two positive nodes and an oncotype score in the midrange, I think chemo was the best choice for me given the information I had.

    Peppopat: If you have gotten an Oncotpye score in the single digits, would you have skipped chemo? If you didn't have the Oncotpye test, just glancing at your diagnosis I would have thought that chemo would be standard of care for you since you had a positive node (though you do note that was a micromet). However, I don't know anything about ITC -- maybe that changes everything.

  • peppopat
    peppopat Member Posts: 90
    edited September 2011

    Peppopat: If you have gotten an Oncotpye score in the single digits, would you have skipped chemo? If you didn't have the Oncotpye test, just glancing at your diagnosis I would have thought that chemo would be standard of care for you since you had a positive node (though you do note that was a micromet). However, I don't know anything about ITC -- maybe that changes everything.

    Answer-I  am  skipping chemo with  Onco in high 20's---radiation,  too.  ITC  is  a  favorable  game  changer.  I  was assigned a high  score  NOT because  of  micromet.  I  was stuck with a high score because  I am  borderline negative  for PR.  That said,  I  will treat  myself  with Letrozole,  off-label  use  of  Metformin  (I am  NOT  diabetic), natural  progesterone cream,  healthy diet,  and an  assortment  of vitamins  and  supplements.   I  don't  recommend  this  course  of  treatment for  the timid. 

  • LtotheK
    LtotheK Member Posts: 2,095
    edited September 2011

    "I'm not sure if anyone relies heavily on the results of the Oncotype DX test. "

    Not the case.  I had one hospital (of my three opinions) using it as the only decision making factor for chemo. For the record and those coming forward:  there is little-to-no definitive evidence that diet and vitamins are "treatments".  They may be preventatives (though still very much in question, sadly, with many of them), but to call them treatments is misleading to future readers.

    Additionally, as far as I understand from my oncologist, they simply don't know why some grade 1 tumors are high scores (you can't just attribute it to borderline PR status, for instance).  They just don't understand the genetics to that fine a point. 

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited September 2011

    http://www.nature.com/modpathol/journal/v21/n10/full/modpathol200854a.html

    The above link is very informative.  The questions raised in this article published in the distinguished Nature journal, under Modern Pathology, have been raised before on many threads here at bc.org and are worth repeating.  For those of you who don't understand journal articles...the discussion section breaks it down for you.....

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited September 2011

    http://www.cigna.ca/customer_care/healthcare_professional/coverage_positions/medical/mm_0298_coveragepositioncriteria_assay_genetic_expr_breast_cancer_patients.pdf

    The above link from Cigna insurance provides a good summary of all of the current genetic tests for breast cancer that are presently available and in research.

  • MaryNY
    MaryNY Member Posts: 1,584
    edited September 2011

    LtotheK: you mention one hospital which uses OncotypeDX as the only decision making factor for chemo. Are they using it for both node-negative and node-positive ER+ bc patients? I would not feel secure with using it as the sole decision-making tool for node-positive patients as the study on node-positive patients involved such a small number of women.

    I saw four oncologists prior to chemo. First onc said I was not a suitable candidate for OncotypeDX test. I didn't even ask the second onc about the test. First and second onc gave me different chemo recommendations and didn't take my prior medical history into account. So I went to a third onc and she was the one who ordered the test. When it came back with a score of 18 she said she would leave it up to me whether to have chemo or not. I felt I didn't have the necessary information to make that decision. So then I went to a fourth onc who didn't even want to look at the Oncotype result. She said they don't factor it into the decision when the patient is node-positive. I did have chemo and rads and I'm glad now that I did what I could to prevent a recurrence. I've been on Tamoxifen for about a year and a half.

    So my experience was that only one out of four oncologists/hospitals were willing to look at Oncotype. That was two years ago and possibly things have changed since then.

  • mks16
    mks16 Member Posts: 415
    edited September 2011

    I haven't had the Oncotype testing done as I live in Canada and its not routinely done, and I am fairly young and node positive (micromet). From what I've read, and I can't now miraculously produce the link but I will if you want me to, PR- in addition to moderate-high mitotic rate will always produce moderate-high Oncotype score. As chemo was never in question for me, I didn't give it too much thought, but now, reading all your posts I wonder.

    The idea that "different methods produce different results" scares me.  Why even get tested then, if some TN might turn out to be ER+/PR+ when different method is used? I knew about slight variations in results, so if one IHC method returns me as weakly positive in 30% of tumour, then its possible that another method would return moderately positive, or in 25% or 50% of tumour. Not in 95% and not strongly positive. That just blows my mind. Does that mean I might be HER2 + and could benefit from Herceptin, but because of the method used I am considered negative and am not getting all the benefits I could?

    I am now going to read voraciousreader's links. I should've done it beforehand, but my fingers are too fast :)

  • MaryNY
    MaryNY Member Posts: 1,584
    edited September 2011
    Peppopat: There is a post on another thread Has anyone been told they don't qualify for onco test? where one woman reported that even with a Stage 1b, Grade I, 1b tumor her OncotypeDX score was 30. So that's yet another example of how you can't rely on tumor grade to predict the score. She decided in favor of chemo.
  • LtotheK
    LtotheK Member Posts: 2,095
    edited September 2011

    Mary, I went with a hospital that took many factors into account, I'm just pointing out that there ARE hospitals out there that suggest Oncotype trumps all, and all of my hospitals used it as a major factor.  I think once Tailor X trials are finished, it will be used even more as a dependable tool.

    I was not node-positive, I would think that would change things up tremendously.  It wasn't until recently the node-positive women were even encouraged to get Oncotype. You are very correct to point this out to readers--because that may very well be all the difference.  Though, there are studies indicating women with up to three positive nodes have very similar outcomes to those who are node-negative. 

    During my first year of treatment/post-treatment, I read every study, looked at things from both angles, freaked out that studies even indicate unless your rogue cells are active, even if they got "out of the barn" chemo may not be effective.  After a while, you just have to go with the best, most educated guess and move on.  There are too many variables, and I'd have to spend every waking moment managing research on every single thing (how about lymphedema, for instance?  sleeve, or no sleeve in the at-risk, but no signs yet group? talk about crazy making).

    I had the advantage of seeking a third opinion from University of Chicago.  This is one of the top research SPORES on breast cancer in the country.  I met with one of the leaders of their trials.  She said, "we just don't know" whether I should get chemo "until Tailor X trials are complete" (what bad luck I had on timing with my diagnosis!).  If she doesn't know, then I'm sure I won't!  And I'm also sure there are a thousand questionable elements to Oncotype, and every other treatment for breast cancer.  It's the best we have for now.

    For me, as I said, Oncotype was a miracle.  It gave me hope. It's not a "scam", it's not perfect, it's not the only predictor for everyone.  But, it is probably the most radical treatment advancement for ER+ patients since the advent of chemotherapy.

  • LtotheK
    LtotheK Member Posts: 2,095
    edited September 2011

    And Mary, most important:  big congratulations to you for completing your treatment!  This is the most important thing of all.

  • MaryNY
    MaryNY Member Posts: 1,584
    edited September 2011

    Even for me, Oncotype was helpful. Based on my Grade 2 and the fact that the cancer had already metastasized to the lymph nodes and with the fact that I had a clean mammo eight months prior to the one where the tumor was found, I thought my cancer was more agressive and expected to get a higher score. It was somewhat reassuring to get a score of 18, even though I had chemo anyway.

  • julia2
    julia2 Member Posts: 183
    edited September 2011

    Don't feel rained on, I am grade 1, stage 1, node negative and my oncotype score was 33.  Why?  well I think because I am only mildly ER + and, depending on who you believe, PR-.  My initial PR result on biopsy was positive, then on the removed lump and also on the oncotype test it came back negative.  Hence hormone therapy is probably not helping me that much, the Oncotype test is evaluating recurrence risk based on surgery plus hormone therapy.  I had chemo and I'm glad I did.  My onc didn't even want to do the oncotype test, I insisted and it totally changed my treatment plan.  Now that i am quiting Tamoxifen due to SEs I'm really glad I had chemo.

    Julia 

  • Kay_G
    Kay_G Member Posts: 3,345
    edited September 2011

    Julia2, that makes sense.  What is considered mildly ER+?  I am 40% ER+, is that mild?  I am higher for progesterone, I think 70%.  Would like to know if I should really do the Tamoxifin.  Am going to talk to the onc about it in a couple of weeks.  I know there are some who believe it diminishes the effect of Herceptin.  This really belongs on a different board, but just wondering if you know what is mildly ER+.

  • Denise2730
    Denise2730 Member Posts: 648
    edited September 2011

    Peppopat - My onco score was 9 and my Onc was still trying to push chemo on me. When I said no, he wanted me to do radiation although I already had a DMX with one positive node (which means I normally wouldn't be a candidate for the oncotype DX test) but Dr. Doom knew I was dead set against chemo unless my score came back very high.

    Like you I'm turning down any further treatment at this point. I'm ordering a natural pill that removes all synthetic hormones from the body, changing my diet and I'm going back to the gym.

    Hey, it may work for me, it may not. Only time will tell.

    Denise

  • mks16
    mks16 Member Posts: 415
    edited September 2011

    The way I understood it Kay, percentage means the area of your tumor that responds to ER, and then there's the response rate which can be weak, moderate or strong.

    There's  numerous studies to be found on the internet, I believe the one I used when looking at my data was Allred score (0-8).

    Allred score = % Staining Score + Intensity Score

    I am weakly positive for ER in only 30% of tumor, so my score is 3 (for 30% percent of area) + 1 (for intensity) = 4.

    With your 70% (score of 5) even if it was only weakly stained, it's still 6 which is considered a high score, and hormonal therapy is very beneficial.

    Here's a link for more reading: http://www.breastcancerupdate.com/bcu2003/4/dixon.htm

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2011

    I was grade 3 after biopsy..(then it changed to grade 2 with the surgical pathology).  I also had a "high" ki67% proliferation rate.   My tumor was 1.4cm.  (Recent protocol was chemo for anything over 1cm)  Before the oncotype test I would have been a definite "yes" to chemo.

    My oncotype came back at 15 (within the "low" range).  My ER and PR are VERY high.  With all this information ~ my onc really felt that endocrine therapy would be my most effective weapon of choice.  He believes that chemo really had no addition benefit for my individual case and, most likely, the damage it could do to my body would outweigh any benefit it may give me.

    I think the oncotype score is just one more "tool" in the box to help individualize treatment to the patient.  I'm sure in the near future they will have yet another "tool" that will benefit bc patients.  My onc and I used the tools that were available to us today and I feel complete peace with my decision.

  • ingoodcompany
    ingoodcompany Member Posts: 26
    edited September 2011

    My pathology report is from the core biopsy because there was not residual cancer at the time of MX. My MO said he cannot do ONCO test because of this and because the Cancer was only 5mm. I am 100%ER positive node neg NEG PR and neg HER............ RX for tamoxifen no RADS no Chemo BMX.       any thoughts

  • peppopat
    peppopat Member Posts: 90
    edited September 2011

    Question  about  ER/PR  percentages

    Am  I to  understand  that  if  I'm  PR+  of  25%,  does  that mean  that my  ER+ percentage has to  be  the balance of 75%?  In other  words,  if  a  patient  is ER+/PR+  must  the  two  pecentages  equal  100%. I tend to  think  not. Am  I  right?   I  say  that  because  my  ER+ is said  to  be 99% but  I  didn't get  that #  from Onco assessment.   If   two  percentages  equal  less  than 100%   combined is that  to  infer  there's  some  other genetic  factor  going on  that  doesn't  have  name??? Just  a  thought.

  • Sheypres
    Sheypres Member Posts: 35
    edited September 2011

    I had a Oncotype score of 48!  That is one of the highest I had seen. 32% chance of recurrance.  I was really expecting a high score even though I had no node involvment.  My Ki67 on my pathology report was a 90% and the tumor was medullary IDC grade 3.  Very aggressive and rare and given my age of 40 all that is taken into account. I had already decided on Chemo, and just had my 2nd one yesterday,  but this just kind of confirmed my decision. When I was waiting for the results I was secretly  hoping for a really high score so I would not be in the grey area.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2011

    ER% and PR% are completely separate.  Both are rated individually and shown on my biopsy pathology and on my oncotype paperwork. You could be 100% for both.  It means how many receptors your tumor has that are able to use Estrogen and/or Progesterone for fuel to grow.

  • peppopat
    peppopat Member Posts: 90
    edited September 2011

     ingoodcompany wrote:

     I am 100%ER positive node neg NEG PR and neg HER............ RX for tamoxifen no RADS no Chemo BMX.       any thought

    IGC:

    I think  you  need  to  consider  this link  very  seriously plus  the  Metformin  if  you  are  truly  considered  PR-.

    http://foodforbreastcancer.com/articles/what-should-er%2B-slash-pr--breast-cancer-patients-and-survivors-eat%3F

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