Oncotype DX dilemma

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Hi all,

I was wondering how many people have considered not doing chemo, or even stopping chemo, based on a low oncotype score.

I had two tumors in the left breast, and one positive node : PT2PN1a

I was prescribed chemo which I already started.

In the meantime, I got the results of my oncotype DX for both tumors: 15 and 17.

This is low, and every tumor taken separately, would have been considered to "not benefit from chemotherapy".

But onc said that all studies were done on patients with one tumor only, so he does not know how to extrapolate to a case with two tumors. Plus, I had one positive node, which according to Genomics, the lab who does the oncotype test, does not not make any difference regarding recurrence rate.

My recurrence is 10% and 11% for each tumor respectively, without chemo.

Chemo might not improve this at all, or maybe a couple of percent.

I am worried I am harming my body unnecessarily.

Anyone has experience or an opinion on this?



Thanks!

Colette

Comments

  • pupmom
    pupmom Member Posts: 5,068
    edited September 2013

    Colette, I had an Oncotype score of 14. Even with 2 positive nodes my MO said no chemo. You don't mention if you are ER/PR+. That is a factor to be considered as well as one's age. Younger women tend to have more aggressive cancers and are often given chemo despite the Oncotype score.

  • barcelonagirl
    barcelonagirl Member Posts: 52
    edited September 2013

    Hi Colette!  I'm curious as to why they had you start chemo before you received your oncotype scores?  I had a score of 21...low side of moderate.  I also had 2 small tumors (1.5 and 1.6) but with no nodes.  ER+ and Her2-  Based on those scores, I was not inclined to do the chemo.  They then ran a Mammaprint Test (by Agendia) which gives you a definitive "yes" or "no" for chemo. Much to everyone's surprise, it came back positive, so the decision was taken out of my hands.  Since you've already started treatment, I don't know if that is an option, but it's worth asking your onc about!! As you said, if the chemo is not going to improve your statistics, it's a tough road for your body.  Best of luck with your treatment decision!!  Hang in there! 

  • barcelonagirl
    barcelonagirl Member Posts: 52
    edited September 2013

    Hi Collette!

    I recently participated in a podcast about the Mammaprint test, along with the Director of Breast Oncology at the Bon Secours Cancer Institute.  Dr Pellicane shared some wonderful information that may be of help to you in general.  I've attached a link to the conversation.  I know I learned some new facts from this as well!  Hope you are weathering your treatment well.

    http://knowyourbreastcancer.com/breast-cancer-dialogues/?utm_source=facebook&utm_medium=social&utm_content=1450517

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

    OK in general I am the chemo-cautious one on this thread. But for what it's worth, at one point, 14 was the definition of low, 15-17 were low intermediate. (The studies may have changed it to 18 at some point??)

    Ki67 is also a factor, if it is high, oncotype may be misleading.

    There is nothing clear cut here, but I would think two tumors and a node sort of says something is going on here and it is reasonable to be more agressive.

    Don't get me wrong, if you were dead set against chemo you could make that argument, but over 14, chemo is a reasonable option I think.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited September 2013

    yorkiemom - Oncotype Dx is only done on ER+ patients.  The results assume hormonal therapy, which would not apply to ER-.

    I looked at the transcript of the podcast - it was very interesting.  I did not have an Oncotype Dx test done, I had Mammaprint from the outset.  It was actually done on my biopsy sample, prior to the knowledge that I was Her2+, which almost always comes out with a high risk of recurrence rate.  So I knew I would need chemo and Herceptin at my first appointment with my breast surgeon. I found this portion of the conversation to be of critical importance for those whose Oncotype Dx result is in the intermediate range:

    "The problem is we’re intuitive creatures, and so when we look at a continuous variable test like Oncotype, we just assume the variable stage continues.  In other words, as the recurrence score goes up, the risk goes up and that’s just not how Oncotype works.  So we intuitively look at those intermediate patients and we say, “Well, you’re in the low part of the intermediate group, so you probably don’t need chemotherapy,” or vice-versa, “You’re in the high part of the intermediate group, so intuitively, you probably do need chemotherapy.”  Unfortunately, if that were the case, there’d be two groups of Oncotype, and there just isn’t. And what we’re finding when we’re running these MammaPrint tests on intermediate Oncotype patients, we’re finding about a 50:50 split in those patients where about half of them are low risk and half of them are high risk.  The problem is they’re spread equally over the whole intermediate subgroup, so in other words, if you come back as a 19 recurrence score which is as low an intermediate score as you can get, you are just as likely to have a high risk MammaPrint as you are a low risk MammaPrint, and so there is no way to tell the difference based on where you fall in the intermediate group, so you cannot take solace that you’re a low intermediate risk patient.  It just doesn’t work that way.  You need a test that’s definitive.  Oncotype is not sophisticated enough to differentiate those intermediate patients whereas MammaPrint is."

  • lisa-e
    lisa-e Member Posts: 819
    edited September 2013

    Colette, I had two tumors, one with an oncotype of 16, the other with an oncotype of 8.  My oncologist initially recomended chemo, but that was before we had the results of both oncotype tests.  I declined chemo after getting the results for both tests.  What I did to help me make up my mind is to treat each tumor as an independent event, that either tumor could cause a recurrence.  I then talked a friend who teaches stats, applied a formula that gives you the chance of either independent event (ie recurrence) happening.  Chemo made a few points difference, not enough to make it worth while.  

    Collectively, your chances of recurrence are higher than mine.  What does your onc say?

  • coraleliz
    coraleliz Member Posts: 1,523
    edited September 2013

    I only got the oncotype done on my node positive side(long frustrating story). Both my tumors were ER+PR+HER2-. Tumors were about the same size 1.3cm & 1.6cm. Both were grade 1. So, I was told they'd treat the node positive tumor & it would cover the other. Surgically I had a BMX. I regret not having the other tumor tested though. My oncotype was low "4". My MO left the decision up to me. I told myself that if the oncotype came back anything but low I'd have chemo.

  • Lenn13ka
    Lenn13ka Member Posts: 313
    edited September 2013



    I positive node, Oncotype 17, 6 opinions ( two great hospitals) 3/3 split. The most positive NO came from one of the top BC researchers in the country .. So opted out of chemo. She said 18 was the line and I would get minimal benefit .



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

    Are you tolerating chemo ok, or are you seeing severe neuropathy or chemo brain? If you are doing ok, you may want to stay the course, but if you are looking at permanent SE's maybe talk about stopping.

  • Colette64
    Colette64 Member Posts: 25
    edited September 2013

    Thanks all for your answers!

    I am ER+ and HER2-, and my onc keeps saying that all other factors point to chemo, except the oncotype.

    I have not done the mammaprint test, and he never mentioned it to me as an option.i am going into the second injection next Wednesday, and I will see if I can bear it. My plan is to go through the chemo until I find it is too hard for me, and then stop.

    My hair already fell off, so I might as well keep going :-)

    Colette

  • Lav
    Lav Member Posts: 65
    edited September 2013

    Thanks everyone. I was in two minds about doing the Oncotype. I am Er,Pr+ and Her- Grade 2 ,1cm tumor on my left breast and 0/3 lymph nodes. My k67 is borderline 20 percent actually. My Oncologist said that if I dint choose to do the Oncotype test hed have to suggest 4 low dose chemo cycles because if the cancer came back later on in any other part like the lungs or bone it could be life threatening too. It scared the hell out of me! For these few days actually Ive been thinking that maybe just doing the chemo would be safer for the future. But now that Ive read all your posts I think he might have been trying to really scare me or just be extra cautious. I felt that Oncotype would just be a formality for him to put me on chemo anyways. I guess no I do have a chamce if my score comes out low right? I mean if my Oncotype score comes out low I can say no to chemo and it wouldnt be a bad decision at all ? Has anyone had the Oncotype score low and had a reccurence? Do any of u know? Id really appreciate some input.....

  • DivaGG
    DivaGG Member Posts: 20
    edited September 2013

    Thanks for the questions Lav as I'm looking for some answers or experiences as well.  I'm in a similar situation with the Oncotype test having just been ordered for me.  I should be getting the results at the end of the month. 

  • AmyQ
    AmyQ Member Posts: 2,182
    edited September 2013

    Even though I have a low oncotype score of 9, my onc didn't hesitate in recommending chemo and yes, it's not a walk in the park, but it was manageable.  Now after 5 TC treatments, I'm NED and the numerous mets on various bones are healing with no cancer indications.

    I don't know if this helps you make a decision but for me, knowing I did all I could to eradicate the cancer from my body was a no-brainer.  Good luck to you!

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

    AmyQ - why was chemo recommended for you with an Oncotype score of 9? Mine was 11 and because of that score my ONC decided against chemo and instead I did 33 RADS treatments and taking Tamoxifen. BTW I had a lumpectomy. I know there is no perfect test but Oncologists, for the most part, are very high on Oncotype testing. My ONC said for years they have overprescribed women and subjected them to unnecessary treatments. I also know there is more to the decision for a treatment than the Oncotype like the grade of your tumor - mine was Grade 1. I also had a micromet in my SN.

  • AmyQ
    AmyQ Member Posts: 2,182
    edited September 2013

    Edwards750 I think she wanted to take on the bone mets which she did and appears to have won. My tumor grade was 2 and with the removal of both breasts the cancer was removed, but my onc couldn't do anything for the bone mets except chemo.  

    It's all very confusing to me but if I recall correctly the oncotype was ordered and back before the bone scan revealed mets.  Anyway, I believe the chemo was a huge factor in my current state of recovery and hopefully will have proven to have been the right thing to do, in years to come. 

  • Lav
    Lav Member Posts: 65
    edited September 2013

    Edwards750 i believe its becAuse AmyQ also has 2 lymph nodes affected thTs why. AmyQ whats mets? Sorry but Im new to this so Id like to check for all positive n negative sides before I make a decision on taking Chemo...

  • AmyQ
    AmyQ Member Posts: 2,182
    edited September 2013

    Mets mean metastasise or in my case bone metastasise. Spread to numerous bones in my body without any warning or symptoms whatsoever.

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

    Lav there are women with low oncotype who progress. Amy is an example. One theory is that they have higher KI 67.

    Lav those are all good questions. If you are intermediate oncotype there is no bad decision. The trials essentially flip a coin, and that may be as good a way of making a decision as any of them. In fact you could flip a coin and it would be ok...it's worth a try. It really comes down in my opinion to your concerns about risk of chemo SE's versus your tolerance of a higher risk of metastasis.

  • angelanature
    angelanature Member Posts: 179
    edited September 2013

    Hi All,you are all very educated,I'm impressed.I went to Sloane Kettering in ny,had my lumpectomy and sentinal nodes which came back a 1.8cm tumor and 1 positive node,8mm.I was offered to be in a study if my onco type was low to forgo chemo.I seriously considered it(my onco dx was 18).I'm er+,pr+her-.The problem for me was that my node mets were greater than 2mm.Therefore the way my docs looked at it my cancer now had grown legs and could have spread microscopically.I'm almost done with dose dense ac and taxol(2 more taxols to go)and glad i didn't decide to be in the study.I just wanted to have no regrets.Maybe in 5 yrs they will determine chemo wasn't necessary for me but they're not there yet.I'm not going to lie, chemo has been REALLY hard physically,emotionally,and financially but I had to do it for my kids,husband,parents,brothers and sisters.Going through this again would be unthinkable and it's 6 months of torture for peace of mind.Love to all my sisters,Angela

  • Colette64
    Colette64 Member Posts: 25
    edited September 2013

    Hi all,

    The way I understood it is that the onco score tells you how likely is your cancer to recur, provided you get hormonal therapy. However, if at the time of the test the cancer has already spread or is suspected to have spread somewhere else, the onco is irrelevant, the cancer has to be eradicated. Onco is for recurrence only. That is why oncs like to do chemo anyway when there are positive nodes bigger than 2 mm, or mets.

    In my case, I had low onco scores for two tumors, but tumors were big, and one positive node. So it was more about how extended it was even after surgery than about chances of recurrence.

    I am now doing chemo, it is a drag, but it is doable. I do not regret the decision. The lw scores only give me confidence that after chemo is done, the chances of my cancer to recur are really low, and that is good news :)

    Colette

  • Lav
    Lav Member Posts: 65
    edited September 2013

    Hi girls. Thank you so much once again for all your input. I feel that my onc should have suggested d bone test first the. Before even asking me to do the onc test. I mean i dint even think of that and i think before i make any decisions on chemo or no chemo even if my onc test results are low it would be best to do d bone test to rule out any kind of spreading later. In the end for me its not as much that im just looking for an excuse not to do chemo but doing whAts bext for my future because my children n my family's future depends on it as well. Thank you so much and Id like to tell you that all your different input has helped dar more than even my Oncologist! Hugs to all of u.

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

    Lav, I am confused, what is the bone test.

    The oncotype measures both the chance of DR and how effective chemo is expected to be.

    The problem with low oncotype cancers is that chemo is less effective...they are usually slower, higher ER, lower KI67.

    Oncotype also looks at some genetic factors as well.

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