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Mammaprint and Oncotype Dx

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FairyDogMother
FairyDogMother Member Posts: 154


I had an oncotype dx conducted and the results came back with a high score in the low reoccurrence range, which means I won’t benefit from chemotherapy. Given my age, family history, and Ki-67 of my tumor another oncologist ran a mammaprint test. The mammaprint results showed a need for chemotherapy. Has anyone else had these two test done and come back with conflicting results? Which test is better for someone under the age of 40?

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  • keepthefaith
    keepthefaith Member Posts: 856
    edited November 2013
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    FDM, I can't answer your question, but I think the onco was designed for early stage, hormone receptor pos, node neg and the menopause stage may be a factor also. I think I read somewhere that it is most useful for post-menopausal, but not positive. I am hormone receptor pos, node neg and post-menopausal. Family history also, but BRAC-. There was a link in the forum somewhere for the oncotest website-it was informative. Maybe you can find it. My MO has ordered the onco test. I was supposed to have an appt today, but results are not in yet...have to wait til Tuesday.

    My MO did mention that if the onco results were in the gray area, she may order the mammaprint. It tests more genes than the onco, but I am not sure which is most useful in your situation. I hope that helps! Making these decisions is hard for sure. Good luck!

  • Srh242
    Srh242 Member Posts: 139
    edited November 2013
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    I was pregnant 4 months. I was 36 years old . Two oncotypes were performed a score of 25 on the core biopsy , a score of only 3 , yes only 3 on the surgical specimen from the lumpectomy and a high Risk Mammaprint result. I did 4 rounds of TC. Crazy to read that your tumor grew 1 cm in only a month. I was misdiagnosed during a previous pregnancy with breast cyst and I thought it was a misdiagnosis. Maybe indeed the cancer started after the first pregnancy , it was 2.5 cm tumor just like yours.

  • Compass75
    Compass75 Member Posts: 1
    edited November 2013
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    Hi Everyone


    I posted on another message and thought to try this thread too.


    I was diagnosed 8 Nov (IDC grade 2 , ER/PR +, CerbB2 -) and had my double mastectomy on the 14th. I went in to the operation with the hope that my nodes would be clear and that I would be able to preserve my nipple in my left breast which had the malignant tumor (1.7cm)


    Unfortunately, at least one node was affected (my doc thinks that it is only one node due to preliminary testing during the surgery.) The full report comes out next week.


    My surgeon says that because 1 node was affected, the oncotype dx test is ruled out (I'm 37). Another disappointment. I'm concerned/dreading chemo and am even considering not undergoing it. Am I completely ruled out for the oncotype dx test? How about mammaprint?


    Any help would be great.

  • FairyDogMother
    FairyDogMother Member Posts: 154
    edited November 2013
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    Compas75: I don’t know with the nodes if the mammaprint would work, but here is great link to a comparison of the two. I will say my mammaprint delayed my treatment, because we had to keep sending tissues samples to get a full reading of Felix (my tumor). You could talk to your doctor about it.


    http://www.ncbi.nlm.nih.gov/books/NBK38449/

  • specialk
    specialk Member Posts: 9,234
    edited November 2013
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    compass - some oncologists are now ordering the Oncotype Dx test with 1-3 positive nodes. Here is a study link, and another thread on BCO with this same question which may have some useful info:


    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3145540/#ref-2752647992


    http://community.breastcancer.org/forum/108/topic/786838?page=2#idx_31

  • RainDew
    RainDew Member Posts: 228
    edited June 2014
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    hi ladies,

    I am going to try to reinvigorate this one rather than start a new thread as is basically the same question - under 40, onco Dx 14, node negative, 1.5cm primary.

    MO uncertain - didn't want to say 'do chemo', didn't want to say 'don't do chemo' - I think mostly due to young age.

    We have ordered Mammaprint - but I am so over waiting at this point!

    Curious what FairyDogMother did (if you are still around) or if anyone else opted for chemo w onco Dx ~14?

    Thanks in advance!

  • grammakathy
    grammakathy Member Posts: 126
    edited June 2014
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    My score was 11 - my age much older than you at 63 - 2.0 cm tumor and no node involvement.  ER/PR positive and HER2 negative.  My tumor staged at 1C and the grade of my tumor was midrange.  My understanding from my oncologist is that the Oncotype testing gives more details on the risk of metastasis.  Isn't the decision ultimately up to the individual to do chemo or not?  Based on my score I didn't chose chemo.  I would have made the same decision if my score had come back anywhere up to 18.  Otherwise, why do the testing if I had decided I wanted chemo no matter what?  The oncologist questioned me before the test about whether I would have chemo if the score reflected it - or if I would opt out no matter what.  I agreed that I would do chemo if the risk was in the high range, and we would discuss it further if it were in the midrange.

  • RainDew
    RainDew Member Posts: 228
    edited June 2014
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    thanks Gramma - very helpful.

    You are right of course - decision is up to the individual. And before speaking to MO, I had thought I would decline chemo with score less than 18. But, frankly, he scared me. Which is why I am interested in learning more about the choices others have made, and why.

    This whole experience has been a whirlwind - and as a scientist with a relatively high need for data and information to make decisions, I am somewhat surprised what a crapshoot some of this seems to be...good lesson in letting go I guess?

    Anyhow, thank you so much for quick response - I am learning as I go, and very grateful for all you ladies who have gone before!

  • grammakathy
    grammakathy Member Posts: 126
    edited June 2014
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    RainDew - Everything about it is an unknown.  After the MX, clear margins and the finding of no cancer in the 3 nodes, I was expecting only to take a pill for five years.  My surgeon told me I was "cured".  The next appointment with the Oncologist was a shock.  You mean I can still have cancer cells in my blood stream and lymph nodes even if they weren't in the sentinel node?  Yikes!  So when the Oncotype DX test was explained, I felt some sense of relief because I looked at it as an objective view.  I have come to the conclusion that I will never feel "cancer free" again.  I am working on changing my outlook and focusing on the things that are important to me.  I'm not sure I will ever return to the "ignorance is bliss" stage I was at when the mammogram detected the lump.  I felt great before that diagnosis and to be honest, I still feel the same, healthwise.  I have reduced my risk by having both breasts removed and am taking arimidex for 5 years.  That is all I can do so I am trying to move on.  I hope you can find some sense of peace with whatever decision you make.

  • KDLodge
    KDLodge Member Posts: 2
    edited June 2014
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    I understand how you feel Gramma. I had a lumpectomy with a 2 cm tumor and no node involvement cleanly removed and my surgeon told me I would only need radiation and pill for five years. Well, oncologist said Oncotype test was necessary and we would discuss chemo when results are back in a few weeks. Not expecting that at all. I am planning on refusing chemo with 18 and under score. I am diabetic and already have enough stress to my body. cancer sucks!

  • keepthefaith
    keepthefaith Member Posts: 856
    edited June 2014
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    I ended up with an onco score of 21. Intermediate. Opted for chemo. I never did the mammaprint test; I didn't want to wait any longer and felt it may muddy my decision more. Had 4 tx's of TC. Was manageable and not that hard for me. I know we are all different. I finished my rads last month and feel as though I am back to how I felt before my DX, with the exception of needing more rest than before. I will be curious to see the trial results of the intermediate scores when they come out next yr. 

    Good luck with your decision(s) and treatments!

  • RainDew
    RainDew Member Posts: 228
    edited June 2014
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    thanks again ladies,

    Keepthefaith, so glad to hear the TCx4 was manageable for you - this is what I will do if I do the chemo. And so happy to hear things are almost 'normal'... I am hoping to feel that way one day ;-)

    I'm still waiting for Mammaprint. But actually the extra time has one small upside - given me time to make peace with this decision either way. Well, sort of. 

    I wish everything could be a little less complicated...will let you guys know how it turns out..

    Rain

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2014
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    raindew...annicemd started a thread Stage 1 Grade 1 Premenopausal.....you should read it.  Of particular note, when Annice started the thread, we hadn't info regarding the SOFT and TEXT trials. At the most recent ASCO meeting, some important preliminary info came out of the meeting.  Likewise, last year some important info was released regarding the ATLAS and atTom studies.

    I strongly recommend that you familiarize yourself with those studies and speak to your physician about them.  Also check out the NCCN'S website and read the professional version of the breast cancer treatment guidelines.  

  • RainDew
    RainDew Member Posts: 228
    edited June 2014
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    thanks Voracious - will check out other thread. (I'm pretty new here, and some of the really long threads are a little intimidating)

    Have kept up w SOFT and TEXT - but I think the output I am most interested in isn't due till ASCO at end of this year (comparing tamox only vs tamox w ovarian suppression). All we know now is that AI+OS is better than tamox+OS, but not whether OS is in itself helpful...I am curious to see where this lands, but not prepared (personally) for a medical menopause until we know a little more (esp as this is hopefully coming soon).

    NCCN guidelines for a case like mine are 'consider chemo'. Basically there is no clear answer. I think TAILORx will have the most relevant results, but sadly too late for me.

    So...basically a crapshoot. I suspect I'll just need to make a decision and live with it - imperfect information or not...

    Thanks again!!! It is super helpful to have thoughts, views and input from those who have walked ahead of me..

  • jessica749
    jessica749 Member Posts: 50
    edited June 2014
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    No single test is perfect 100% in its prediction or certainty. Every decision and factor is an odds game. All you can do is weigh them in your case - get a lot of info as you and MO are, and mak a most informed decision.  It's hard.  

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2014
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    Rain...I think you were referring to December's San Antonio Breast Cancer Symposium where we are keeping our fingers' crossed that the SOFT study's "official", " preliminary" results are unveiled. For sure, TailorX will hopefully give us more info, as will the numerous other studies in the works including those studying Zometa.  

    What makes our situation unique is that we have excellent prognostics, so we have so many options available, which makes deciding which treatment we want for ourselves so difficult....

  • RainDew
    RainDew Member Posts: 228
    edited June 2014
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    yep! Voracious you have me right (dec for SOFT, maybe 2015 if lucky for TAILORx as I understand it).

    And for the excellent prognostics, I am grateful every day. Every day. So I am very aware that it might seem whiny to complain about waiting or the difficulty I am having making tx decisions - god knows, I am lucky to have decisions to make.

    Thanks again - nice to hear from kindred souls.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited June 2014
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    NerdyNo matter what! It still requires a lot of thought to come up with a treatment plan that is right for each of us!  I wish you well!

  • KDLodge
    KDLodge Member Posts: 2
    edited June 2014
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    Just got my Onco back today with a score of 14. I am NOT doing chemo. I am diabetic and 60 years old. I am going for Rad set up first of July and then forward with Hormone treatment. it is your decision but 14 is in the low range and it's risky for me personally.

  • Tmwag
    Tmwag Member Posts: 1
    edited July 2014
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    my 1st onco ordered a mammaprint - came back as 29 - high risk...switched mo's and the 2nd ordered the Oncotype DX - my score was 11 with no benefit of chemo.  this was my 2nd cancer diag. in 3 years and  I had just finished chemo for NHL, so I am not wanting more!  I had a mastectomy to avoid more radiation.  So, which test do I trust?  My current MO is puzzled with the opposite results and is trying to find out why...I see him again at the end of July.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited July 2014
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    Ask that your case be immediately presented to a tumor board for review.  Good luck!

  • RainDew
    RainDew Member Posts: 228
    edited July 2014
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    hi Tmwag,

    This happened to me too, but in reverse order. Oncotype Dx was 14, Mammaprint 'high risk'.

    My MO bridged the gap this way - I was pretty close to the line on the Mammaprint, but even if you assume the full 29% recurrence risk (Mammaprint doesn't segment the risk further, or try to show the data linearly like ODx does) this is w/o any tx. So shave 50% off for tamox (already assumed in the ODx score) and they are closer. Not perfect, but apparently there can be some discordance between the tests.

    I opted for the chemo. You may feel differently given your history. It was a very difficult and painful decision.

    Rain

  • MomtoIrishQuads
    MomtoIrishQuads Member Posts: 61
    edited July 2014
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    Geezzz...now that I read these posts I wish I had insisted on a Mammoprint.  When I read about it and mentioned it to my oncologist's PA (who didn't seem that well versed) she said that they don't do that since it isn't empirical enough (huh?) and that at a oncatype score of 21 - that they don't recommend chemo.  At least if Mammaprint had given me a high risk I would be feeling better today after an extreme day of body aches.  Just goes to show that we have to be our own advocate.  I moved from CA to SC - what did I expect?  This isn't a medical mecca.  I thought that my oncologist was decent here (was at MD Anderson) but she's young - and although she didn't necessarily agree with the PA's opinion (PA was covering for her when she was on vacation) she just kept on saying "it's up to you". (from biopsy to surgery, path went from .5 centimeters to 1.9 centimeters and from Grade 2 to Grade 3)  So - she was no big help.  So I called my former oncologist in CA and he said - definitely do the chemo since 1)  you don't know if you'll be able to tolerate hormone pills for 10 years and 2)  this is your second time around (Stage 0 three years ago).  Thank god he had an opinion!  So, here I am feeling like a truck hit me.... but at least someone had an opinion.  I agree with Rain - this stuff can make your head spin.

  • RainDew
    RainDew Member Posts: 228
    edited July 2014
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    MomToIrishQuads- I am also in California :-) and suffering with you one day behind.

    It's hard - basically the science is pretty great but not quite perfect. So there some dice rolls, and most docs try to understand your risk profile.

    For me, I am young, same qu as you about 10 yr tamox (not to mention OS), and hell if I don't want more than the ten years bandied about as success. :-)

    So I could have walked away w ODx at 14. But my MO wasn't thrilled and neither was I. The extra test just made it easier for me to make a tough decision. Would I have landed somewhere different if we hadn't done it? Maybe. But the confidence intervals in ODx are pretty wide too...

    I am at peace with this decision now.

    Hope I am at peace with it tomorrow as well Loopy

  • MomtoIrishQuads
    MomtoIrishQuads Member Posts: 61
    edited July 2014
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    Rain - as you know, l made a decision to drop out of chemo, and now I'm second guessing myself.  If the chemo wasn't that darned hard and the TailorX study for us middle range oncatype was in, and I wasn't Grade 3 then it would be MUCH easier.

    I'm thinking about getting the Mammaprint test done.  Did it help you with your decision?

    I've read on the Johns Hopkins website that chemo isn't as effective with your Grade 1 - did your MO talk about that?

    I thought that I was over the chemo hump but gastro stuff reared it's ugly head again.  Not sure that I can go back for more poison next week.....

    MomtoIrishQ

  • RainDew
    RainDew Member Posts: 228
    edited July 2014
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    hi MomTo,

    I did have Mammaprint done. I basically agonized over this decision and was super frustrated that there weren't TAILORX results yet. Yes I have a grade 1 tumor, so one more reason not to assume chemo would be effective. And yes even if it is, it is a small percentage benefit. (ODx have me 9% 10 yr distant recurrence chance w tamox, 1-2% chemo benefit). 

    So technically even with the chemo I'd be more likely to recur than to have chemo stop the recurrence.

    Having said all that, I don't want 10 years, I want 40 years. And if there are say 100 women, and 9 get asked to leave the room, but wait! 2 come back! Well, I want the option of being one of those 2.

    So I umm'd and ahh'd with my MO for 8 weeks and we finally ordered Mammaprint on top of OncoDx. (They were running some kind of special freebie for women in the ODx grey zone). Guess what? Mammaprint came back high risk. Which made this decision REALLY easy.

    For me - 12 crappy weeks and I know I won't ever have to look back with regret. Doesn't mean I might not be part of the 7% (someone has to be), but I will know I did what I could. For me, that is peace of mind.

    How are you thinking about it?

  • jetgal23
    jetgal23 Member Posts: 28
    edited July 2014
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    Glad to read this discussion since I have an oncotype score of 21 and Mammaprint was suggested.  Took a few days to make sure they had enough tissue sample and clear it with my insurance, but now i'm waiting for the Mammaprint test results.  I kept thinking that I probably wouldn't need chemo, but now reading others stories there is no way to know for sure.  I'm grateful to have more info from this test - even if it isn't everything. I'm also participating in a study at my cancer center with these results, so hopefully over time more people will have it and they'll have more science on this.  I think I will get test results next week...

  • RainDew
    RainDew Member Posts: 228
    edited July 2014
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    good luck jetgal - let us know how you go.

    And also if you do choose the chemo, my experience so far has been totally doable. Not fun, but doable.

  • lihuejan
    lihuejan Member Posts: 9
    edited July 2014
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    Aloha Girls, hope this thread is still going. I had an oncotype dx score of 0. Three Mo's said they never saw a score or 0.At first I was quite thrilled. But you know how it goes ....you get thinking about the worse. Now I am wondering if the lab sent the unaffected breast tissue to Oncotype instead of the breast tissue with the cancer in it.  Has anyone ever heard on a score of 0?

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited July 2014
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    yes...there have been a few here with a score of 0.  I wish you well!