anyone with a OncoType score of 0 ?

AgnesG
AgnesG Member Posts: 8

Dear Friends

I just got my oncotypeDX results and there were at 0. I am trying to see how usual that is and what do people with very low score are doing treatment wise?

Thanks so much for your reply

ILC, Stage IIIA, 6cm (no lymphatic invasion, negative deep margin), Grade 2, 1 node affected (one 3mm), ER3+/PR3+, HER2-

Comments

  • jojo9999
    jojo9999 Member Posts: 202
    edited June 2016

    Hi AgnesG

    I had multifocal disease, so I had two onco tests - one was a 0 and the other a 4. If you look at the factors that figure into the onco score, very high ER and PR will drive down the score. Here is an old post that explains the score. My ER was 90%+ and PR was 100%. ER and PR are also measured when the onco test is run on a different scale, can't remember mine, but they were also high on that measure, including PR being greater then ER. I have asked my docs "what does a 0 mean", and they all shrug. But the idea that cancer is typically heterogeneous is scary - what if they tested a different sample and it was wildly different? how much variation is typically seem in the full tumor? not sure if they know that.

    https://community.breastcancer.org/forum/6/topics/828914?page=1#post_4317226

  • jojo9999
    jojo9999 Member Posts: 202
    edited June 2016

    Hi AgnesG

    I had multifocal disease, so I had two onco tests - one was a 0 and the other a 4. If you look at the factors that figure into the onco score, very high ER and PR will drive down the score. Here is an old post that explains the score. My ER was 90%+ and PR was 100%. ER and PR are also measured when the onco test is run on a different scale, can't remember mine, but they were also high on that measure, including PR being greater then ER. I have asked my docs "what does a 0 mean", and they all shrug. But with a score of 0, what are they recommending about chemo?

    https://community.breastcancer.org/forum/6/topics/828914?page=1#post_4317226

  • Lojo
    Lojo Member Posts: 303
    edited June 2016

    Hi -

    My score was a 7 - so not a zero, but pretty low. I also had a relatively large tumor (4+ cm), with no lymph nodes affected. No chemo. I had rads and am on tamoxifen (in theory for 10 yrs total). ILC is so tricky though, given its propensity to be diagnosed at larger sizes than IDC. My understanding is that low oncotype scores, even with one node affected are often going without chemo and are just recommending anti-hormonal therapy- but much of the data that formed the basis for those recommendations were collected from IDC tumors, which tend to be smaller. Have you had a LX or a MX?

  • JohnSmith
    JohnSmith Member Posts: 651
    edited June 2016

    Interesting, on numerous levels. Stage IIIA, 6cm and a ODX score of zero?
    Did you get a KI67 percentage on your pathology report?

    It might be wise to get a second opinion.

  • Sjohan
    Sjohan Member Posts: 1
    edited February 2018

    are you still on here? I’m always searching for someone with similar numbers. I got a 0 oncotype too. My breast surgeon said I’m maybe one of 2 people that they have ever had with 0. I am stage 1b grade 1. IDC .7mm micromet in one lymphnode. .Rads and Tamoxifen for me. Freaks me out with a 0, thinking- maybe the test was a fluke. The docs assure me the labs do backup testing and triple checks on the various tests. They just tell me to be happy with my 0. Ok. I’ll try I guess. Haha

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited February 2018

    Mine was low but not that low (3). When I had issues about taking tamoxifen initially my oncologist said that was a lot of faith to put in one number. Freaked me out too since my grade was 2 and the ki67 was 22%. One thing I’ve learned is that each of us will always have questions.

  • letsgogolf
    letsgogolf Member Posts: 263
    edited February 2018

    My Oncotype score was also a (3). My oncologist told me that I had the second lowest score that she had ever seen. The other was a (0). Strange that both myself and the (0) person both had 1 node with a micromet deposit. I wonder how that happens with such seemingly lazy tumors? Makes me wonder if it was from the biopsy. I had 2 types of biopsy procedures on the same day and my lumpectomy didn't happen until 2 weeks later. Seems like the nodes may have been cleaning up the biopsy mess that was left behind. Who knows?

  • Kat17
    Kat17 Member Posts: 10
    edited April 2018

    I was dx'd in 2016 with IDC, ER/PR+ Her2-, stage 1a, grade 1, 1cm, 0/1nodes, oncotype dx score “0". Bilateral mastectomy. Happily take Anastrozole since Onc said there was still a chance, albeit small, for recurrence...just hope my bones don't suffer

  • kandyhunt
    kandyhunt Member Posts: 87
    edited June 2018

    I just got my Oncotype score. Zero also. My ki67 was 13. I had stage 2a IDC. I had a BMX. My next appointment is Wednesday with the oncologist. I had one node with cancer but the BS said they got it all. So now I am wondering what I should do next. I have heard some many things bad about Tamoxifen. What. A crazy journey.

  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited June 2018
    Wow, zero is a great score! Just remember, that your stats include taking Tamoxifen for at least 5 years.

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