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Information on decisions with Oncotype score

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  • wanderweg
    wanderweg Member Posts: 487
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    Meow, I believe that both my surgeon and my oncologist were trying to impress upon me the gravity of the situation. They would never have forced me to do anything, but they wanted me to really understand my odds. I'm grateful that they didn't pull any punches. It was easy enough for me to think about what scared me about doing chemo, and their job to help me understand the other side of it.

  • ZEKE
    ZEKE Member Posts: 59
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    Thank you Meow13

  • beesie.is.out-of-office
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    Zeke,

    The following might help you understand why you have a high Oncotype score. This is the formula used to come up with the score. 21 genes within your tumor sample are evaluated; some are considered to have a beneficial effect - or at least are beneficial from the standpoint that they respond well to endocrine therapy (Tamoxifen or an AI) - whereas others are considered to have a negative effect, potentially causing the tumor to be more aggressive.

    image


    Within our pathology reports we don't get info about most of these genes, but just looking at a couple of the factors that you do know, you can see why you have a high score.

    First, there is the Proliferation group, which I highlighted in blue. You may not have the information for any of the 5 genes measured within this group, but you do know that your tumor was Grade 3, which signifies a high rate of proliferation. So it's fair to guess that your Proliferation score is high. When you move down the chart to the formula, you can see that the Proliferation score carries a lot of weight in the calculation of the total score. A higher Proliferation score drives a higher Oncotype score.

    Then there is the Estrogen group, which I've highlighted in red. This is where you want to have a high score, because as the formula at the bottom of the charts shows, the score from the Estrogen group is subtracted from the Oncotype total. In other words, the higher your Estrogen group score, the lower your Oncotype score. In your case, because you have a very low ER level and a very low PR level, it's pretty certain that your Estrogen group score is very low.

    So just looking at these two variables explains a lot about why your score is high. You have a high proliferation tumor, indicating aggressiveness. You have low ER/PR, indicating that alternative treatments to chemo (i.e. endocrine therapy) won't be effective against your tumor. That drives a high Oncotype score, along with a recommendation that chemo would be the most effective treatment to reduce the recurrence risk from your particular aggressive tumor.

    Ultimately, based on the information you get from your Oncotype score and your Oncologist, you have to decide how high a risk of metastasis you are comfortable living with (not that any of us are comfortable living with any risk of metastasis), and whether the amount of risk reduction you would get from chemo is worth it to you.


  • wanderweg
    wanderweg Member Posts: 487
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    Beesie, Thanks, I’d not seen that formula. That’s helpful information. It’s good to have as much information as possible to make a decision you feel is best for your particular situation.

  • ZEKE
    ZEKE Member Posts: 59
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    Bessie,

    Thank you for this explanation. Why oh why can’t my oncologist sit down with me and go over my results like this? I feel he is burned out. Day in and Day outat M D Anderson he sees breast cancer patients and has to give them the bad news and watch them cry. I believe he has been doing this for 16 years.

  • wanderweg
    wanderweg Member Posts: 487
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    Zeke - My first oncologist was pretty dismissive and wouldn’t explain the oncotype results to me. I got a second opinion and that one sat down with me and walked me through the report. The second one is my oncologist now. I’m a form believer in finding someone who will take that time with you so you truly understand your options.

  • debal
    debal Member Posts: 600
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    I agree wanderweg. It's important to feel comfortable with your MO even if that means a second or third opinion. Mine doesnt always offer up every detail but if I ask she always answers my questions. So I go in with a list of questions. Shes not warm and fuzzy and I knew that going in. However, she knows her stuff and I have my BS to lean on if I need that. It's so important to find a good match since the relationship continues after active treatment is over.

    ZEKE. I know you have heard this before but once you have your plan in place it will get better. It's so much to take in and it's not an easy decision. It was important to me to choose the path that provided the least amount of worry. I didnt want to second guess myself constantly. This disease can come back no matter what we do. Listen to your gut and as your options become more clear choose your path. You will find much support here from others that have been down the same road. Take care

  • cowgirl13
    cowgirl13 Member Posts: 782
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    Hi ZEKE, I was 63 when I had chemo and really had no problems with it. I did have side effects but I never had nausea as my oncologist proactively treats it. I was tired but had good days. It was very doable. I'm 10 years cancer free.

  • ZEKE
    ZEKE Member Posts: 59
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    Hi!

    Thanks for your reply. Did your hair fall out

  • voraciousreader
    voraciousreader Member Posts: 3,696
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    zeke.....with respect to hearing from anyone with a score over 40 who didn't do chemo, I don't think there are many who made that decision. That tells me that most patients. with that high of a score did chemo.


    Likewise, being in your early 60's is considered young. If you were much older, or if your doctor didn't think you were well enough for chemo, then he wouldn't have recommended it. I hope your second opinion physician does a better job at explaining things and answers all of your questions.


    I incerely wish you well....

  • debal
    debal Member Posts: 600
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    cowgirl, I agree. Alot of good nausea meds out there and some regimens are very doable. I'm so glad you are doing well.

    Zeke, my hair did fall out but actually started coming back during chemo. Keep us posted on how you are doing.

  • ZEKE
    ZEKE Member Posts: 59
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    thanks for your reply! I am seeing a cardiologist this Wednesday to check my heart he may make that decision for me

  • ZEKE
    ZEKE Member Posts: 59
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    the chemo he listed was three different kids and very strong. He said my hair would fall out on the first treatment.

  • voraciousreader
    voraciousreader Member Posts: 3,696
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    zeke! Good! I am 62 and have had quite a few surgeries. Two, in the last year. All of my surgeries require clearance from a cardiologist. I know chemo is different, but getting cardiology clearance is a must for many of us. I want to add, last year, my 82 year old cousin was diagnosed with colon cancer. She just finished chemo in November and is doing very well. She just visited ME and my family. She helped us celebrate the birth of our newest grandchild.


    Remember 62 is YOUNG! You should have many good years ahead

  • wanderweg
    wanderweg Member Posts: 487
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    Zeke - That's great that you have the cardiology consult to help with your decision. It's yours to make, always, for every step of treatment. I can tell you, if it helps, that I was absolutely terrified about having chemo. But once it got started, I realized it was going to be okay. Please let us know how your appointment goes next week - you have a lot of people here cheering you on!

  • cowgirl13
    cowgirl13 Member Posts: 782
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    ZEKE, my hair did fall out and somehow I lived through it. I found a nice wig that was shaped and styled for me and I had lots of compliments on my 'hair'.

  • everetta
    everetta Member Posts: 27
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    Zeke, How high was your oncotype score. Mine was 31 and when it was done a second time it was 27 (one on the biopsy tissue and one on the lumpectomy tissue) so there can be variance in the scores on the same tumor. I am still trying to decide but must decide very soon if I will do chemo. I am 68--for under 50 there would definitely be value but over 50 the results have not shown that. I would love any advice or to hear what others have done. My tumor is lobular and chemo is a little less effective with lobular but my tumor is also PR- (ER+) so Ais are also a little less effective. I initially decided not to do chemo but I am definitely worrying about my decision.

  • Marymc86
    Marymc86 Member Posts: 29
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    Hi Zeke.

    I had a score of 27 and chose no chemo. However, my tumor was estrogen and progesterone positive. I had lumpectomy and radiation. I have not taken Anti hormonal meds either and I’m one year out.

    Triple negative is a different animal. I know they will suggest chemo for reasons already stated (aggressive tumor, grade 3 and high Oncotype score). I was 54 at diagnosis. I can understand your concerns about chemo and the difficult decision because of no guarantees. I felt the same way and finally made my decision. But, I never considered skipping radiation after hearing lumpectomy and radiation together is as effective as mastectomy.

    Good luck with your decision. Once my mind was made up, I was at peace with the decision


  • voraciousreader
    voraciousreader Member Posts: 3,696
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    everetta...not sure what you are referring to....Tailor study confirmed benefit for patients under 50 years of age with Oncotype DX scores over 16. For patients over age 50, benefit of chemo begins at a score at 26 and above.

    Now...the real question is deciding how much benefit vs. risk each patient is willing to accept....

    No two people are alike.....

  • ZEKE
    ZEKE Member Posts: 59
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    Hi MaryMC86

    Thanks for your reply! Well I am leaning towards what you did. I will be 62. Originally before the Onco score came out since the tumor was so tiny they wanted to do partial radiation and the hormone therapy. My onco was 41 but even if they did it again and it dropped 7 or so points it’s still high. I am seeing the radiologist tomorrow

    Morning and am supposed to get my simulation done. Well see what she says. On Wednesday I see a cardiologist to check my heart. I am also waiting to get a second opinion from another oncologist. When I talked to the radiologist nurse she said they can do radiation first sometimes depending on the radiologist decision then If I wanted to do chemo I stil could. At

    Least that would

    Buy me some time to make

    My decision while I am getting some kind of treatment as my surgery was January 18th.

  • ZEKE
    ZEKE Member Posts: 59
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    Hi Everetta,


    My Onco was 41. When you had it re-tested was it the same lab? Did they charge you extra for the re-test?  How much?

    I see some people on this site have it re-tested by a different laboratory.


    Thanks


  • wanderweg
    wanderweg Member Posts: 487
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    Zeke, the size of the tumor has more to do with how early it was discovered. For decisions about chemo, the important factors are things like tumor grade, Ki67, oncotype score... in other words, how aggressiveyour particular cancer is. But again, not trying to influence you, just wanting you to have the information.

  • ZEKE
    ZEKE Member Posts: 59
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    Bessie and group,

    So here we go. I noticed the my biopsy pathology was positive and the results were different than my ONCO tripe negative score. I talked to the oncologist about the difference this morning and he said oh they are different test and I said are you sure and I read them off to him. I said I want my test to be redone he said it all goes to the same company for the ONCO scores. I said I have seen others get their scores redone and they come back different. He said he never heard of that.

    So 2 hours later he calls me and says I did look at your results and they ARE different. So I am going to call the lab that did the pathology on your biopsy which said 70 percent positive and see if there is any tissues left for them to redo the test. My tumor was only 0.7cm

    With that I feel like did they switch specimens? Did they put the wrong label with a different name on the specimens? They are completely different results.

    How can I decide wether I get chemo or not if I have 2 different results and now not sure for sure if they are my specimens?!!


    He said he would come me back when he finds out.

    I told him this is a MESS! With my life and someone screwed up here!

  • salamandra
    salamandra Member Posts: 745
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    Hi Zeke,

    Sometimes (maybe even often, this is still an emerging area) tumors are heterogenous. It is very common to get sightly different results on different tests, and sometimes even very different tests, depending on which part of the tumor they happen to get.

    I think they try to treat everything they see. So if there are parts that are triple negative, they'll recommend chemo, and if there are parts that are hormone receptor positive, they'll also recommend an anti-hormonal.

    That said, your doctor really should have caught the discrepancy and called for whatever follow up would give him the best understanding of your cancer (whether it's catching a lab error, which is definitely possible, or confirming that you have a heterogenous tumor). It's good that he is looking it up now. I think in your shoes, I might seek a second opinion, especially if he thinks it's heterogenous (cause that's a bit more complex) but probably no matter what. I'd just feel better having a second set of eyes and brain on it.

  • ZEKE
    ZEKE Member Posts: 59
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    Hi Salamandra,

    I have never heard of that in a tumor but I can say if it wasn’t for me questioning it he never would have addressed it. My Gosh I am so upset about it.

    I still have not made a decision on chemo or not and now this happened. And my oncologist had to give me the referral for a second opinion. I wanted it out of his group but still with MD Anderson so they could access my tests easily. My oncologist called me today and said I talked to the oncologist to get you a second opinion and showed him your ONCO score and he said they are backed up but to tell her they would do the chemo and follow his plan.


    Well wait a minute that is not a second opinion to me! I want to see another oncologist and talk with them about my options!

    Am I to believe that is what he actually said?

    So then my oncologist said well if you want an outside referral than I will get you one. I said yes I do.

    In the meantime I decided to get my simulation and do the radiation first. At least I am getting something done and will still be within the 90 days window for chemo if Indecide to do it.

    It’s a mess

  • AMLMom
    AMLMom Member Posts: 16
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    Hi Zeke, I have been following this post and I just wanted to say that I am sorry that you have been dealing with such a mess on top of all the stress of diagnosis and making difficult treatment decisions. I sometimes feel like my breast center is a factory, and the doctors are overworked and not able to focus on important details. I force myself to believe that they are scrutinizing the reports behind the scenes, but some of the things I see and hear make me worry. Good luck. I hope you find a MO that you are more comfortable with.

  • ZEKE
    ZEKE Member Posts: 59
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    thank you so much AMLmom!

    My heart is wrenching over all of this but I am starting my radiation next week so at least I am moving forward with something until I find out what is really going on with my specimen and reports before I can make a decision on chemo or not.

    Thanks again

  • nancyhb
    nancyhb Member Posts: 235
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    Hi ZEKE,

    Like you, my Oncotype score was 42, and like you, my pathology results and Oncotype results were different. I had a smallish tumor (1.3 cm) and my initial pathology was ER+ >75%, PR+ >50%, Her2-. My Oncotype test shows ER+ <10%, PR-, Her2-. And like you, my head spinning, I demanded an explanation. It didn’t make sense! Even my MO was shocked. As others have explained already, most tumors are heterogeneous; the small sample the pathologist reviewed showed higher ER receptors and some PR receptors. Oncotype tests the sample as a whole, so different results aren’t unheard of. And as Beesie pointed out, the lower the ER and PR receptors and higher the proliferation, the higher the Oncotype score. Your sample wasn’t mislabeled, it was likely heterogenous.

    It’s a lot of conflicting information to absorb, I know. Make sure you get the answers you need before making a decision, even if that includes a second or third opinion, so you are confident you’re doing what’s best for you.
  • ZEKE
    ZEKE Member Posts: 59
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    Nancy HB

    Hi and thank you for your reply. You did have what I have and I can see that it started for you in 2011. You had chemo you had radiation and it came back in the same breast in 2016. And in January 2017 it turned into stage IV and went into you bones. How are you doing now?

    Are you doing any more treatments?

    May God Bless you.


  • nancyhb
    nancyhb Member Posts: 235
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    ZEKE - I always hesitate to respond to threads because I never want to confuse or concern someone with similar stats or resilts. We are all different, and I have come to believe that much of this BC is a crapshoot. We make the bet choices for us, based on the information we have on hand, and that’s all we can do. Hopefully your MO continues to be supportive and provides the information you need to feel confident in your decisions.