Any high Ki67 survivor stories out there?

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jenlee
jenlee Member Posts: 504
edited September 2020 in Who or What Inspires You?
I would LOVE to hear from ANY survivors who had high Ki67 !!!!  (Also hormone positive with high Ki67).  My Ki67 is 75%, which feels like a death sentence, even though half way through chemo, the tumor has shrunk by about 80%.  It has been an emotionally challenging week and I could use some positive (really positive) stories.
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2012

    I'm fairly newly diagnosed..so not sure what help I'll be... but I did have "high" Ki67.  Report said >20%...I never did find out what the actual number was.

    My onc said the Ki67 was just ONE of the characteristics of the tumor...and you have to take all the variables together.  I noticed you are Grade 2 (as opposed to Grade 3), with no node involvement.  Right there are two very positives! :) .... also being hormone positive and HER2 negative is great.  Did you have an oncotype test done?... I'm assuming not since you are doing neoadjuvant chemo.  I had the oncotype test done and had a "low score" even though my Ki67% was high.  So just being high Ki67 does not necessarily mean you have a really aggressive tumor.   Because of my low oncotype score (and my tumor was <2cm) we chose not to do chemo.  But since you are doing chemo then I assume you will be taking either Tamoxifen or an AI...you are kicking cancer's but to the curb and I just wanted to tell you to hang in there and the stats are WAY in your favor! :)

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  • thenewme
    thenewme Member Posts: 1,611
    edited March 2012

    Hi Jenlee,

    My ki-67 was 100%.  Yeah, really.   The bad news is it was growing like wildfire.  I know what you mean about feeling like you've been handed a death sentence.  The good news, though, is that chemo targets fast-growing cells.  Your tumor shrinkage indicates that it's working well for you.  It's a great sign. I'm sorry you're having a rough week.  Hang in there and please try to go easy on yourself.  It's such a hard spot you're in right now, but I want you to know it really does ease up, both physically and mentally.     

    Are you having any side effect problems making things harder on you?  Do you have lots of support at home, especially with your daughter?  Are there things you might be able to ask friends or family to help with during this incredibly difficult time to help ease your burden?

    I've passed my 3-year mark and I'm doing great!  It gets better. Hang in there!

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  • jenlee
    jenlee Member Posts: 504
    edited March 2012

    Thanks for responding ladies. Glad to know you're both doing well!!  

    susansgarden, no they didn't do oncotype because of the size of tumor & Ki67, so chemo was a given.  Oncotype is one of those things that I'd like to know if it's favorable, and don't want to know if it's not :)  Thank you so much for your encouragement. 

    thenewme, I've had few side effects.  Starting to feel fatigue after 5 of 8 TACS, otherwise I've been incredibly blessed with manageable side effects.  So fortunately, I don't need much help with anything. Saving up all offers of help until my BMX.  My biggest problem is my morale, which I'm working on...  I came across a long thread about node-positive survivors, which was very inspiring.

    So I'm hoping to be inspired by MORE high Ki-67 survivors...

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  • lrr4993
    lrr4993 Member Posts: 937
    edited March 2012

    I am only about 1 1/2 years out, but I was 98% Ki-67, TN, Grade 3, metaplastic.  I pretty much hit the agressive cancer lottery.  So far so good.

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  • fightinhrd123
    fightinhrd123 Member Posts: 633
    edited March 2012
    Mine was high - I cant remember what it was and I have no clue where my report is, but I want to say it was either 60 or 80...I'm thinking 80.  Chemo killed it all, and im good so far.  Chemo loves fast dividing cells ;)
    Laura
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  • weesa
    weesa Member Posts: 707
    edited March 2012

    Mine was very high--75%. Nodes were matted together, one node had a 2cm tumor wrapped around it.

    Doing well.

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  • kathleen1966
    kathleen1966 Member Posts: 793
    edited March 2012
    Wow!  I have no idea what any of my scores were but thanks for the heavy dose of feel good to my bones hope! Laughing 
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  • jenlee
    jenlee Member Posts: 504
    edited March 2012

    Bump!

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  • thenewme
    thenewme Member Posts: 1,611
    edited March 2012

    Weesa, I too had matted, clumped nodes.

    Jenlee, if it's any comfort at all, your morale problem is very common at this point in treatment.  You're truly in the midst of a war, so try to give yourself permission to accept your fatigue and emotions.   Don't beat yourself up trying to fix things now.  Just do what you need to do to get by.  It's great that you're having fewer side effects than some, but don't underestimate the trauma you're dealing with.  

    I'm saying this because honestly, in hindsight, I think I was too hard on myself and expected too much from myself when I was in the thick of things. 

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  • jenlee
    jenlee Member Posts: 504
    edited March 2012

    Bump

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  • jenlee
    jenlee Member Posts: 504
    edited March 2012

    bump

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  • jdeking
    jdeking Member Posts: 408
    edited March 2012

    I had Ki67 of 61% and am 3 years out from diagnosis and doing well.

    Hang in there! Things will get better.

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  • jenlee
    jenlee Member Posts: 504
    edited March 2012

    bump - still hoping for more encouraging true stories!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2012

    Jenlee ~ I also wanted to add that the majority of people that are doing really well and far out don't hang out here much...they are busy living life. :) ... so don't be too discouraged if you don't see a ton of long term survivors responding. 

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  • jenlee
    jenlee Member Posts: 504
    edited March 2012

    SusansGarden, thanks so much for reminding me of that!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2012

    You're welcome. :) .... also, another thing... this site is fairly "new" ...so since most people usually don't seek out this type of forum unless they are newly diagnosed and/or in active treatment....you aren't going to see many people past 5 years as active members on here.

    Hope you are having a great day. 

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  • Josiekat
    Josiekat Member Posts: 85
    edited April 2012

    Hi-

    My ki67 was 98%. I was freaked out. My Onc told me that most young women have high ki67, that made me feel a bit better. And my chemo is working quite well, as they predicted.

    Cheers.

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  • sflow
    sflow Member Posts: 297
    edited April 2012

    I don't remember having a ki67 number on my path report.  Should it be there?

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  • LisaEllen
    LisaEllen Member Posts: 22
    edited April 2012
    Smile
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  • jenlee
    jenlee Member Posts: 504
    edited April 2012

    sflow, I think that one of the surgeons we consulted with told us that some labs/doctors use Ki67 and some don't.  

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  • LisaEllen
    LisaEllen Member Posts: 22
    edited August 2013

    am

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  • lintrollerderby
    lintrollerderby Member Posts: 483
    edited April 2012

    I'm not quite a year from diagnosis; I had my last chemo the end of August. My KI-67 was 76%. It is scary, but I take hope that many women are several years out with higher scores than mine. I hope to be one of them.

    Good luck to you!

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  • christina1961
    christina1961 Member Posts: 736
    edited April 2012

    Mine was 50% - I am about 14 months post diagnosis.

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  • weesa
    weesa Member Posts: 707
    edited May 2012

    My ki67 was 75%. Almost ten years out.

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  • jenlee
    jenlee Member Posts: 504
    edited May 2012

    Weesa, that gives me happy tears!!!!!!

    Thank you so much for your post -- I'm sure everyone on this thread appreciates it!

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  • suemed8749
    suemed8749 Member Posts: 1,151
    edited May 2012

    Thanks to everybody posting here with their stories.

    I was dx in Jan. 2008 - ki67 50%. Best wishes to you all.

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  • jenlee
    jenlee Member Posts: 504
    edited May 2012

    thanks for suemedd for posting and congratulations on doing well!

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  • MsBliss
    MsBliss Member Posts: 536
    edited May 2012

    ki67 is but one feature that factors into prognosis; many other features can balance what looks like an aggressive little cell....but if you look at my siggy line, I had a ki67 of 70 -90%. It was 70% in some areas, 90% in others. Triple negative, grade 3 on one scale, grade 9 on Nottingham. The first pathologist who looked at my biopsy was more than a bit alarmed at what she saw, so much so, that she picked up the phone and called the surgeon before filing her report. There was nothing mild about my tumor. I just passed my three year primary lumpectomy anniversary in March.

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  • JFV
    JFV Member Posts: 795
    edited July 2012

    Hi !  My KI 67 score was 98% !  Grade 3, stage 3 ER, PR positive.  I also had three types of BC roaming aroun my breasts.  But, I'm still here two years later.  Became very friendly with 11 women from this board who went through chemo the same time I did.  We are all still alive and kicking.

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  • kencooperjr
    kencooperjr Member Posts: 5
    edited June 2013

    I realize this forum may not be quite the fit for this question but based on the topic and responses i have seen it may help.



    My wife has quite recently been diagnosed with breast cancer (IDC) with an overall grade of 1. After surgery the pathology report indicated the tumor size as 8mmx7mmx6mm. Five sentinal lymph nodes were examined and all five were without tumor cells.



    The following data were defined at the initial biopsy: ER: 100%, HR: 100%, Her2/neu: 1.2, Ki-67: 8%



    The after surgery pathology report is: ER: 96%, HR: 100%, Her2/neu: 0.8, Ki-67: 42%



    Surgery was almost two weeks after the biopsy.



    The numbers are close except for the Ki-67 wherein the after surgery value is about five times the initial biopsy value!



    I am wondering is the Ki-67 index of REAL use in determining if one needs chemo or not. We had assumed radiation and hormone treatment then the Ki-67 value in what seems to be an outlier has thrown all of this initial thoughts upside down with the possibility of chemo. As I have read the forum replies and a considerable amount of other data/information I see some doctors don't even have this test in the pathology report, some have it but it is not used to determine treatment and some use it - Arrgh.



    Thanks for any thoughts and comments - Ken

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