High Ki-67, but low grade and stage?

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  • Cjzach10
    Cjzach10 Member Posts: 87
    edited January 2019

    No the results will have to come from your dr. They may tell you how much longer. It doesn't hurt to ask whatever you want!

  • Salamandra
    Salamandra Member Posts: 1,444
    edited January 2019

    I hadn't seen the Magee calculator before. I never got a ki-67, but I do already know my oncotype score (9). I was wondering if I could 'backwards engineer' the ki-67 that way.

    Playing around with the info from my pathology report (100% strong estrogen, 90% moderate progesterone, grade 6 Nottingham), it is impossible to come close to my oncotype score even if I put the ki-67 at 0.01%. The 3 equations go 12 (eq3, which ignores the Nottingham),14 (Eq1, which uses everything), and 16 (eq 3, which ignores the ki-67 - and is the only one I could calculate without entering a ki-67). So I don't think ki-67 can really be determinative.

    On the one hand, these are all too high. On the other hand, 18 and under is considered low risk, and they are all low risk, so for practical purposes of deciding chemo or not, it would have got me to the exact same place.

    They don't send the whole tumor to oncotype... so oncotype is getting, I think, more of a biopsy sized part of the tumor. My biopsy pathology was definitely more favorable than my lumpectomy pathology - it was higher PR and only grade 1. So I was a bit worried that oncotype could also be deceptively favorable. On the other hand, DNA is DNA. Right?? I wish I had more science background now. But my DNA from the tiniest sample or a large sample should be the same, is that accurate?

  • HPFULL
    HPFULL Member Posts: 247
    edited January 2019

    I asked my breast surgeon because my initial biopsy showed 100% ER0% PR and low proliferation and My pathology after surgery 91% to 100% ER 41 to 50% PR and high poliferation. Maybe I’ll call the lab tomorrow and see what they actually do I’m curious.

    Hugs

  • thecargirl
    thecargirl Member Posts: 94
    edited January 2019

    My Oncotype test was 32, the Magee scale is low teens. My doctor never took the test seriously, Mucinous Breast Cancer based on her data does not respond the same to the testing. The Oncotype RS scores, low, medium or high results in 1200 Mucinous Breast Cancer patients had the same living statistics however they scored.

  • HPFULL
    HPFULL Member Posts: 247
    edited January 2019

    They just pushed my Oncotype test results back to "possibly" Friday. I was supposed to have the results last Thursday 😢 this is really making me crazy

  • Cjzach10
    Cjzach10 Member Posts: 87
    edited January 2019

    I had my oncologist appt today. I didn't leave feeling much better about the whole screw up. The oncologist feels like its ok since oncotype caught it and it caused them to double check everything with the pathologist. I asked to see documentation and I could tell it wasn't going to be easy and honestly i don't have the energy to fight for it right now. I haven't decided if im going to call the pathologist directly or not. I don't know how to feel about anything right now! Its exhausting! I did start on femara not tamoxifen since it has a a risk of clots snd ive had a small stroke. So ill start that tomorrow..hoping for 0 side effects!

    hpfull im so sorry your in the same boat. My dr said they were seeing it take longer and longer for results. Which didn't make me feel any better. Now i dont see her again until jan 22 but I'm gonna call every day starting on the 17th. Thats when oncotype said they have the results to the oncologist.

    Thanks for listening!

  • HPFULL
    HPFULL Member Posts: 247
    edited January 2019

    I am so sorry Cjzach10. It’s not fair that you have been on this roller coaster for so long. Did they mix up your sample or are they retesting it t? When I called today they said they had to run additional testing on my tissue sample to insure accuracy. Sure sounds like something is up with the Oncotype Lab. Seems like lots of people are having similar issues. So hard when your life is in limbo. I hope you get answer soo

  • Cjzach10
    Cjzach10 Member Posts: 87
    edited January 2019

    Hpfull

    My oncologist ordered the test and sent my h and p to oncotype on dec 17. Same day she called and told me she ordered it. Oncotype didn't receive the specimen from the pathologist until dec 27. Specimens come with what he called a block id number. Don't understand exactly what that is. Then with the holidays no one did anything with it until jan 3rd. When they went to verify the specimen with the initial documentation sent on the 17th one of the numbers didn't mstch up. So they immediate called the pathologist and was able to determine it was my specimen based on a few other identifying criteria. So the test was never started..thank goodness..until they were able to follow protocol and use other forms of identification to make sure it was correct. They started testing on jan 4th. I wonder in your case if it had anything to do with the size of the sample. My oncologist said today that there are varying amounts of tissue in the block or slide. Sometimes not enough to complete the test and may have to request more. Sometimes there isnt more. Based on your 2cm you'd think there would be plenty. I'm so curious to see what our scores will be. The waiting is so hard! I hope you hear before Friday!


  • KBeee
    KBeee Member Posts: 5,109
    edited January 2019

    You definitely can call the patholigists office. I always called mine beofre I picked up my results.

  • HPFULL
    HPFULL Member Posts: 247
    edited January 2019

    Salamandra I get 10s for the 1st 2 equations and 13 for the middle when I plug in your number 300 Er 270 Er 6 Nottingham I put 1 for tumor size because I don’t know if yours was exactly 1cm but that what your info says based on that I think you had very low proliferation or ki67. Not certain as I am definetly not a pathologist lo

  • HPFULL
    HPFULL Member Posts: 247
    edited January 2019

    been thinking of you Cjzach10 🙂 did you get your results? I think you and I had similar initial pathology results. My score came in at 15 so no chemo 🙌 Hoping your score is low as wel

  • Cjzach10
    Cjzach10 Member Posts: 87
    edited January 2019

    So happy for you hpfull! Yes my dr called today..my score was 10! No chemo!! Im still skeptical of the entire situation with the mistake. Idk what happened for me to get results so much faster. The lab said it would be 14 days from the 4th. But I've resigned myself to the fact ill never know for sure if everything ended up being done correctly and I'll have to just trust it was. I've never been so relieved!

  • HPFULL
    HPFULL Member Posts: 247
    edited January 2019

    That's great news CJZach10! You were hoping for a 10. I am sooooo happy for you :)  Yes not sure what was going on with the lab. I talked to them Tuesday and they said I wouldn't have my results until at least Friday at the earliest and even if they did I would get them because they were still waiting for pre-authorization from my insurance. I called my insurance and was a wreck and in tears. My onc called to cancel my appointment Tuesday since no results were available and then all of a sudden Wed. morning the onc called and said results are in. So strange. I am just so happy to final know.

  • Meow13
    Meow13 Member Posts: 4,859
    edited January 2019
  • Salamandra
    Salamandra Member Posts: 1,444
    edited January 2019

    Great news HPFULL and Cjzach10! Especially after all the stressful waiting!

  • Renee9487
    Renee9487 Member Posts: 6
    edited February 2019

    farmerlucy, thank you for the link to the Oncotype gene list on Researchgate. I had asked my surgeon's PA if I could get a list of the genes, and she promised to ask the company if they could send me that info... but this is so much better. Since I am a molecular biologist, I will amuse myself looking up the functions of all the genes while I wait for the Oncotype DX results. 


    The cat avatar is Paul, right after his first cancer surgery in 2011. The little fellow just passed away in November from a heart condition. 

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited February 2019

    Oh Cool Renee9487! Let us know if you discover anything interesting.

    Sorry about losing Paul. Looks like you gave him a wonderful life.


  • Renee9487
    Renee9487 Member Posts: 6
    edited February 2019

    Sure, farmerlucy! It will probably take me a few days to look up all of the literature regarding the genes, but I can certainly post a little overview of the gene functions once I have that information. 

    I actually love to post about scientific matters in various forums. Happy

    Thank you for the kind words about Paul. I sure miss the little guy.


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