Do most TNBC'ers get ki-67 scores?

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AgathaNYC
AgathaNYC Member Posts: 473

Hello.

I've been reading a bit about ki-67 numbers, esp as related to TNBC and long term success. I'm finding conflicting info as to how useful a tool it is, especially if the testing is done from a core biopsy.

My breast center doesn't do the test - or at least they didn't on me.

I'm curious: do most of my TNBC sisters know their ki-67 score before they start treatment? If so, was it used to decide treatment? Do you feel like it is important information for you to have?

Thanks for any input you can offer!

Comments

  • Desirr77
    Desirr77 Member Posts: 31
    edited November 2017

    TNBC is linked to high KI - 67 scores, so for us it is not a useful information. KI67 scores are a helpful tool to decide between Luminal A and B tumours when hormone receptors are positive. Luminal A mostly is fine without chemo, Luminal B mostly has to undergo chemo. To decide between these two categories, it makes sense to define KI67 scores.

    I am a good example how subjective it is to define KI67scores: My core biopsy said 80%, my second opinion said 60% and when my tumour got genetically tested, the report stated 20%.

    I do not think that there are lower scores than 20% for TNBC. And all scores about 14 % are considered high.


  • VL22
    VL22 Member Posts: 851
    edited November 2017

    I didn't get that information either. Not on my pathology report

  • AgathaNYC
    AgathaNYC Member Posts: 473
    edited November 2017

    Desir77 - Thank you so much for the clear explanation. I had been reading so much conflicting information. It makes sense to me now. Cheers!

  • ABCMom
    ABCMom Member Posts: 11
    edited November 2017

    I didn't have Ki67 score either. I asked my doctor why I didn't have it, she said because I am TN, Ki67 must be very high. It will not provide additional useful information. I can understand the reason now.

  • AgathaNYC
    AgathaNYC Member Posts: 473
    edited November 2017

    Thanks, BriMom and everyone else for answering. I feel fine about not know my ki-67 score now.

    There are just so many screenings and tests as well as so many types of breast cancer. Sometimes a little rush of anxiety that I am missing something bubbles up and I just need reassurance from you guys.

  • Flynn
    Flynn Member Posts: 307
    edited November 2017

    AgathaNYC, I’m chiming in a little late, but my first pathology report had my score (98%). When I started looking into my results, I almost lost it. You could possibly think of not knowing as a good thing, based on where some TN scores run :)

  • AgathaNYC
    AgathaNYC Member Posts: 473
    edited November 2017

    Flynn - you read my mind! If it's a given the score is high with TNBC, I don't feel the need to know just how high.

    Hope you're having a good week.

  • Gwinnettgirl
    Gwinnettgirl Member Posts: 28
    edited December 2017

    hey there! My doctor at Emory said that my previous oncologist did not run it on the core biopsy but it didn’t matter he sure it was high anyway and we needed to do chemo because the size of the tumor. Hope that helps:

  • justwhisper
    justwhisper Member Posts: 2
    edited December 2017

    I am also diagnosed in September of this year. I have not started treatment yet. In fact Dr. called this morning and left message that he has treatment plan to discuss with me. I have recently switched drs...so the time frame is my doing.

    But my Ki67 is 5%. My docs have told me this is significant as Chemo works on fast growing cells and mine are indicating slow. I keep googling and seem to only find sites for fast growing or high Ki67. Not much on low at all.

    I have had different stagings by different docs. 1st doc said 3A second doc says 2B.

    Its a lot of information and well, I just tell everyone I have blender brain now because it all just gets thrown in and im dizzy with it and its all mixed up.

    I am also not very good at just being an obedient I want to know who what where when and why.

    overwhelming to say the least.

  • AgathaNYC
    AgathaNYC Member Posts: 473
    edited December 2017

    Hi, JustWhisper.

    All the information is definitely overwhelming, and still we are hungry to know more about our specific cases.

    I hope your treatment goes well and that your new doctors give you the info you want.

  • justwhisper
    justwhisper Member Posts: 2
    edited February 2018

    So, I have to say, this website and my lack of computer skills are kind of confusing and just now figured out my way back here.

    Yep...blender brain, I tell ya.

    So, for an update, i ended up having a 'metobolic profile' test. (Dr. said this test was not available 3 months before we did it- is it true? IDK) Not all results are back in even yet. (A month later)

    But the part we did get back basically told what chemo drugs were likely and unlikely to work on my specific cancer.

    I am on carboplatin and abraxane once a week for 12 weeks. So far, I have had 3 doses my 4th will be Wednesday Feb 7. I started with 3 large tumors. 2 in my right breast and one in the armpit. The 2 in the breast were so large it was almost impossible to tell there wasn't just one taking up half my breast. basically the upper right half.

    The chemo has been different in side effects from week to week. second week I was in tears ready to quit. I have NOT had much problem with neasea and vomiting. Stomach cramps...more like knives and needles. body pain. brain fog. fatigue. neuropathy pain. dizziness. ugh. (Oh, I also have chiari malformation and syringomyelia...SO NOT fun!)

    I dont know if I will make it through the whole 12 weeks. The bad weeks are bad. This past week has been tolerable. sort of.


    However, after only 3 treatments...by feel, I would say my tumors are only half the size. the one in the armpit..probably even less.

    I've heard these particular drugs are effective on TNBC. but that often ppl drop out of treatment and it tends to lower white cells. My test have been good so far.

    Hair started falling out last week. Not bald yet. I have fine hair to begin will so, my hair just looks stringy and sloppy now. Just never stops loosing hair. Irritating really...on clothes, gets caught on fingers, caught in glasses, leave some wherever I go. lol oh and little bumps on head. Kinda looking forward to being bald so i can put some darn benedryl cream or something on there. stop the itch! And go hat shopping! Well, online.

    9 more infusions to go. Then the next phase.

    ...if i didnt post this is the right place, feel free to instruct me as I am lost.


  • Sharrose
    Sharrose Member Posts: 12
    edited February 2018

    My Ki-67 was 85. I got this number the same day I got diagnosed with TNBC.

  • rdeesides
    rdeesides Member Posts: 459
    edited March 2018

    I have recently learned there is a subtype of TNBC that has low ki-67 scores and these do not respond well to chemo typically. I did not have ki-67 score, but I have asked for it.

  • Maggie2
    Maggie2 Member Posts: 247
    edited March 2018

    Rebekah, with my ki-67 being 5, I'm curious if you have any more details or could direct me to the article (if it was from an article) about the low scores and response to chemo. When I first got the final path report, they said ki-67 is more useful for hormone receptor positive tumors so I didn't ask more about it.  With my MO telling me to decide between AC-T, TC, or CMF, or even nothing, I'm living on the internet, trying to get information.  The wait for my 2nd opinion oncologist appt seems forever.

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