Any high Ki67 survivor stories out there?

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Comments

  • jsrose14
    jsrose14 Member Posts: 42
    edited June 2013

    Ken-

    My breast surgeon describes the ki-67 as the "poor mans" test and basically said that the oncotype test trumps it all. Did anyone talk about the oncotype test for your wife yet? If she doesn't have positive nodes I think this test would be the standard way that most oncs usefor the decision on chemo.



    Hope that helps. Good luck!



    Jsrose

  • bluepearl
    bluepearl Member Posts: 133
    edited June 2013

    Jenlee: you are doing everything right and your are still stage 2a, medium grade and CLEAN nodes, with other favorable prognostic factors (ER/PR+ and Her neg). Chemo wipes up fast growing cells like yours as if the dirty little devils sucked up the poisons with a straw...hence why your tumor responded so well.

  • Lily55
    Lily55 Member Posts: 1,748
    edited June 2013

    I had two ki 67 tests done, one was 95 and the other 25 percent.......

  • GoodVibrations
    GoodVibrations Member Posts: 1
    edited June 2016

    So I just posted the below in a topics forum and then noticed your post.. I am a newby.. but now i think I know why my BS is so upset.. My path report said

    Ki-67 HIGH (80%) now i know this is bad.. any words or thoughts ? I am stage 1



    I am 56, healthy and active with no family history of breast cancer. I have had annual mamograms ..forever..

    I felt a lump 4 years ago.. it was a cyst..No further issues. I have now felt another lump at the same location of the last cyst..But this time there was some tingling and itching.MyOct 2014 negative no issues..I go in for a mammogram with a specialist. Radiologist is concerned,so schedules me for needle biopsy( 2 suspicious sites).Here is the path report. Only left breast involved

    Good news- I think..Estrogen and Progesterone Pos and Her2 Negative (0) but...Ki-67 HIGH (80%)

    areaA- DCIS at least 1.0cm nuclear grade 2, Comedonecrosis

    Area B- Microinvasive ductal Carcinoma 1.5mm thats MM! 2 foci

    Only Microinvasion present

    Associated DCIS grade intermediate central luminal necrosis present

    I thought this was a "great cancer" to have.. but my breast surgeon look like shes highly concerned and ordering another biopsy and a breast MRI.

    She is one of the best and I have a family member that is an MD.BS is saying mastectomy ..why is she saying this from these results..Can anyone help me with what the BS is thinking is so wrong that has me meeting with a platic surgeon asap..I thought standard thinking was a lumpectomy..what am I missing?
  • farmerlucy
    farmerlucy Member Posts: 596
    edited June 2016

    My ki67 was high at 22 and my oncotypedx was 3. I asked my onc about it and she doesn't put much stock in the ki67 number, also the oncotypedx uses ki67 in their computation so that is another check and balance. I also read on these board that healing tissue can cause a ki67 to be high. Maybe ask your wife's onc about that, or her pathologist. I would insist on the oncotypedx test for prognosis purposes and to determine the need for chemo. IMHO all your wife's numbers look really good and the ki67 may just be an anomaly. You could have her pathology sent for a second opinion. Johns Hopkins does this for a few hundred dollars. One thing I know for sure - you all will always have questions about the dx, so the more you can get answered at the beginning the better. After fours years I called up my pathologist's office and they were happy to answer all my questions and even took another look at the slide. Best of luck.

  • farmerlucy
    farmerlucy Member Posts: 596
    edited June 2016

    Sorry - I was replying to the wrong post. I hope you get some answers soon. Gentle hug.

  • 4everStrong
    4everStrong Member Posts: 88
    edited June 2016

    Any other stores?

  • yodez75
    yodez75 Member Posts: 7
    edited February 2017

    I completed chemo on 1/12/127 after 16 rounds. I had my first followup appt with my onc today and all seems well. My ki-67 was 95%. My onc told me I am high risk for relapse...which scared me. It's good to know there are others out there with a high ki67 and doing well even years after dx. God bless u all!

  • jenlee
    jenlee Member Posts: 204
    edited September 2020

    Wow, I just logged back on for the first time on a few years and was looking at my “favorites."

    My tumor was 4 cm, which was considered large and my Ki67 was 75%. My daughter was eight years old when I made the original post and I was halfway through chemo. By the time I completed chemo, there wasn't much left of the tumor. Shortly afterwards, I had a lumpectomy and the pathology of what was removed was just DCIS. A few weeks after that, I had a bilateral mastectomy with reconstruction.

    For the first few years, not an hour went by that I wasn't worrying about cancer and dying. I was a nervous wreck. I wondered if there would ever be a time that I didn't worry.

    Eight years later, still alive😂 I don't think about cancer every hour, nor every day. Maybe not even every week. My daughter is now sixteen and is a young woman. I thought that perhaps I could reassure some of you that are newly diagnosed and worried.

  • Tenacity83
    Tenacity83 Member Posts: 6
    edited September 2020

    Interesting topic! Thanks for bringing it into 2020, Jenlee!

    I was horrified when I was teaching myself about Ki-67 scores and sites like breastcancer.org were saying "6% is considered low, 6-10% intermediate, and more than 10% is considered high." My Ki-67 score was 80%. I couldn't wrap my head around what that meant! When I told my oncologist I was worried, he said that it wouldn't matter.

    I'm glad to see that I'm not the only one with a high score and that others are doing well!! My golf ball sized tumor may have initially been growing fast but before I finished 12 weeks of taxol and 4 infusions of herceptin and perjeta, it (previously 3cm) disappeared from my pre-surgical MRI. I had a pathological complete response to chemo so there was no cancer detected at the time of surgery!!

  • kmom57
    kmom57 Member Posts: 181
    edited September 2020

    Jenlee, thank you for taking the time to post. I’m in the thick of it, and cried when I read your post, particularly about your daughter now being a young lady, as I have a young daughter too. Thank you for the encouragement.

  • LisaEllen
    LisaEllen Member Posts: 8
    edited September 2020

    I am a 17 year survivor!!

    My tumor was fast growing as well. I do not remember my ki67 score. But I remember being terrified by my recurrence rate quoted to me at my initial visit.I was told the tumor was aggressive. I had a self exam three months prior to diagnosis and an OBGYN exam five months prior that did not detect it. This is significant because the tumor was on the chest wall above my breast, and I was also smaller than an A cup. Chemo and surgery got that number down to a 17% recurrence rate. Happy to say I've never had cancer rear its ugly head since. I've been happy with my decision to have bi-lateral mastectomies with reconstruction as well as dose dense chemo. I have upgraded my cup size ;)

    I can't do push-ups, but I couldn't do them before either, haha. I can do anything and everything else, and I am very grateful.

    Hang in there ladies, you have an army of supporters here who wish and pray for your healing!!!!! Virtual hugs

  • clars
    clars Member Posts: 46

    bumping this because my ki-67 is 75% and freaking out 😢

  • trishyla1
    trishyla1 Member Posts: 103
    edited May 2023

    Hey, Clars. I understand. I had a ki67 of 95. Talked about freaked out. The bad news is that you'll be having chemo. Pretty much a given The good news is that I was diagnosed on August 29, 2016, and I'm still here six and a half years later.

  • weninwi
    weninwi Member Posts: 795

    Ken,

    Here's a discussion between Dr. Mark Pegram and Dr. Lee Schwartzberg regarding Ki-67.

    https://www.onclive.com/view/measuring-ki-67-levels-to-inform-hr-breast-cancer-treatment

    My Ki-67 was 60%. This measure has been basically ignored by my MO and has never been discussed even though I raised questions. When I was first diagnosed, I was determined not a candidate for chemo based on my Oncotype score of 18. I was told the cut off for No chemo was an Oncotype score of 25 or less.

  • clars
    clars Member Posts: 46

    Thank you @trishyla1 ❤️ so glad to hear you are all ok! I’m having chemo at the moment - five weeks left. Apparently high ki-67 indicates good response to chemo so I hope it’s working well!

    I also read in a journal article recently: “Ki67 is correlated with the grade of the tumor, and is not a predictor for the survival of breast cancer patients” but also other conflicting stuff. Blahhhh!

  • hangin
    hangin Member Posts: 20
    edited July 2023

    Hello Clars ~ Just came across your thread. My Ki67 42%, caused me great concern on top of being high grade 3. I was not considered a candidate for chemo here in 🇨🇦 for my case. And was told that Oncotype DX testing is meant to guide chemo treatment, as per my Oncologist. Sending bundles of good vibes your way & wishing you the best of everything always 🤗

  • hangin
    hangin Member Posts: 20
    edited June 2023

    Hello Weninwi, I wanted to thank you for posting the link “Measuring Ki-67 Levels to inform HR+ Breast Cancer Treatment” I found it very informative. Sending bundles of good vibes your way & wishing you the best of everything always 🤗