Ki67 testing and BC risk

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momoschki
momoschki Member Posts: 682
edited April 2016 in High Risk for Breast Cancer

I just came across this article and found it fascinating. For those of us who have had dx's of atypia that put us at high risk, it seems this just may be the answer to distinguishing who is really at exaggerated risk From those who are less so. Seems like it could potentially save a lot of us fromunnecessary and protracted anxiety.

http://news.harvard.edu/gazette/story/2016/04/new-...

Unfortunately, I just looked back at my stereotactic biopsy pathology report and there is no mention of Ki67. That was over 5 years ago. Does anyone know if the 5 year old slides could be tested now? Or is it too late?

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited April 2016

    I can email my genetic counselor and ask. My care and all my doctors were in a "one-stop" shop of connected clinics through UTSW. She has encouraged me to keep in touch and would probably know how long they keep biopsy samples. Since they are a big research center maybe they keep frozen samples

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  • momoschki
    momoschki Member Posts: 682
    edited April 2016

    Thanks, Melissa. It would be very useful information to have

    I am actually scheduled for a 6 month check tomorrow -- US and mtg with my BS. I'm going to ask her. I have no idea where the slides are. I'm assuming they are hopefully at NYU where I am being followed. It just seems like this test would be extremely helpful and potentially (hopefully) help me to relax.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited April 2016

    She is no longer at UTSW, but I found her and sent this:

    Hi Megan,

    I don't know if you remember me, but you did my assessment and testing at UTSW/Parkland clinic about five years ago. I had an unusual presentation of Mucinous Borderline Ovarian Tumor, intestinal cell type (huge-almost 20 pound tumor) with large volume ascites and PE and then was shortly thereafter diagnosed with LCIS. I had paternal grandmother & aunt with colon cancer and a dad who grows big polyps fast & you tested me for CHEK2 and PTEN before BRCA, all of which were negative.

    I have a network of high-risk friends through the breastcancer.org discussion boards who are on the six-month merry-go-round of monitoring for LCIS, ALH, ADH, etc.

    We saw this article http://news.harvard.edu/gazette/story/2016/04/new-weapon-against-breast-cancer/?mc_cid=b0ef82a46d&mc_eid=00533c3e53

    We are wondering if it is feasible or possible to have our stored biopsy samples KI-67 tested for additional information. Also, in the case of ALH/LCIS, since it is so frequently multifocal, would the individual areas of concern be like diagnosed cancer and potentially all have different KI-67 rates?

    The constant monitoring is so emotionally wearing and we would all be so excited to have additional information that might help more accurately evaluate our true risk. Individual risk assessment in our cases seems to be so lacking at this point in time. Some "high-riskers" are told anywhere from 25% to 80%, which isn't very helpful.

    Hope you are doing well.

    Thank you,

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  • momoschki
    momoschki Member Posts: 682
    edited April 2016

    Melissa, well put (as always). Please let us know What her response is. You're so right about the emotionally draining quality of the frequent monitoring.

    As for me, I will be going to my appt with my BS tomorrow armed with a printout of the article. I will report back

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  • funthing42
    funthing42 Member Posts: 418
    edited April 2016

    Answer is yes I just requested all slides from 2009

    Ki67 50% originally.

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  • Ddw79
    Ddw79 Member Posts: 533
    edited April 2016

    Excellent job Melissa.

    Thank you

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  • Sloan15
    Sloan15 Member Posts: 896
    edited April 2016

    I saw that study, too, and I'm wondering if some of us could have our normal breast tissue (or lumps from benign breast disease) tested for ki67. If the normal tissue has a high ki67 as noted in the study as a potential marker for future cancer, I'm wondering if a bmx would be recommended for us like it is for BRCA 1 and 2 patients.

    My cancer had a high ki67, but my most recent biopsy (5 mo PFC) was benign and not tested for ki67. But, if Dana Farber Cancer Ctr thought it was worth testing, I'm all for it. The article says they need patients to share esp if we had kids later in life.

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  • momoschki
    momoschki Member Posts: 682
    edited April 2016

    Actually, I have just reread the article more carefully and yes, the testing was done on normal tissue of high risk women-- thus, presumably no need to uncover old biopsy slides. I think this is potentially really exciting. I've just emailed the lead author to find out if this procedure is actually currently being done. Also, I needed some clarification since a previous article she wrote several months ago stated that the testing had only been done on premenopausal women (and I'm post menopausal.

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  • momoschki
    momoschki Member Posts: 682
    edited April 2016

    Update: remarkably, Dr Polyak, the lead author of the study, answered my email within minutes! Amazing.

    The research was done on premenopausal women only. And, sadly, the testing is not yet available.

    Ah well... still very promising.

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  • lekker
    lekker Member Posts: 594
    edited April 2016

    To the question of how long biopsy samples are stored... I'm sure it varies by facility but when I was diagnosed with ILC, I was shocked to learn that my HMO still had my colon polyp in a warehouse from 12 years earlier. They pulled the polyp to test it for indicators of Lynch Syndrome. Can you imagine working in that warehouse??

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  • momoschki
    momoschki Member Posts: 682
    edited April 2016

    And further update:

    From a follow up email concerning potential testing of Ki67 as a predictor of BC risk in postmenopausal women (I'm quoting directly):

    We did test normal breast biopsies from postmenopausal women also, but
    Ki67 was not predictive of risk in this group. Most likely because the
    level of Ki67+ cells reflects hormone-induced proliferation of breast
    cells and after menopause there is much less of this. But, may be testing
    a larger cohort and more sensitive assays can change this, although
    knowing your risk at younger age could help with setting up more
    personalized screening strategies. Ideally we would like to eliminate
    these proliferating cells, so then we could decrease breast cancer
    incidence. I really hope that some of the strategies we are trying out now
    will work. We will see...


    So-- that clarified the pre/post-menopausal question

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  • Sloan15
    Sloan15 Member Posts: 896
    edited April 2016

    Did he say whether bmx might be recommended for women who had high ki67 in the healthy tissue like it is recommended for BRCA?

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  • momoschki
    momoschki Member Posts: 682
    edited April 2016

    The article doesn't specify particular recommendations depending on ki67 expression,but just states that ki67 can be used as a tool to tailor surveillance and stratify risk.

    If you've got specific questions, I'd suggest you email her. She is remarkably responsive!

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited April 2016

    Shoot, I only missed it by a few months. My hysterctomy was only six months prior to my breast stuff started and at the time of my hysterctomy I still had "weakly proliferative endometrum."

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  • luvmygoats
    luvmygoats Member Posts: 2,942
    edited April 2016

    On the Hormonal Thread about taking AIs for 10 years the comment was made from a very knowledgeable contributor that specimens are held for 10 years as lekker found with her polyp held 12 years. Just thought I'd throw that in for general consideration since I did not know that.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited April 2016

    Her reply to me. She did copy a geneticist who is still at UTSW for me. 

    Glad to hear from you, I hope you are doing well. KI-67 is something, as the article states, that is routinely tested in breast tumors to help doctors learn more about the prognosis of a tumor. It appears from this article that the scientist was looking at if this could be used as a potential way of detecting cancer before a diagnosis. This article concludes that this might be possible, but this appears to still be early stage research, I would imagine that this is not a routine thing being done in the clinics right now. I am not working in the clinical space right now. I have left UT Southwestern and am working for a genetics Health IT company so I am not aware of/up to date on clinical trials at this time. I have cc'd the Senior Genetic Counselor at UT Southwestern, Linda Robinson, who can get you more information.
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  • chef127
    chef127 Member Posts: 891
    edited April 2016

    Thanx for posting this article on KI67. For the first time I think I understand what my hi score means for me. I had 3 or 4 bx on my tumor all were 24-26% plus the final path and oncodx. Is it the makeup of ALL my beast tissue? Is this why my fibroadenoma grew so large? Did Ki67 play a part during puberty in the over growth of my breasts like my sister, daughter, grandmother, and paternal aunts? None had BC.

    My opposite breast had a fatty lump that was benign and of coarse Ki67 was not tested. I'll be asking my MO if I can have the specimen checked for the Ki67 'mutation'. I was peri or post? meno at the time. Can I have a bx done now on my healthy breast tissue to see if the Ki67 is present and what my ER is? I'm so curious and really less fearful of that #.

    Maureen

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited April 2016

    I think this theory is very early in the testing stage and not being performed routinely or on demand from what we are reading and being told.

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  • chef127
    chef127 Member Posts: 891
    edited April 2016

    MelissaDallas,

    I so respect and appreciate your post. I find myself reading your posts on threads that don't really apply to my situation bc you always put a logical spin on all of it. Thank You.

    But I will ask for a bx, even if I have to pay OOP. What's the harm in doing it?

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited April 2016

    It would be so nice if they could find some way to better quantify risk for ADH, ALH & LCIS. Many of us are currently getting more monitoring and imaging than women who have actually been diagnosed with cancer. It sucks when they can't tell you better than somewhere between 25% and 80% risk of developing cancer. There are women here who have actually been told that.

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  • Ddw79
    Ddw79 Member Posts: 533
    edited April 2016

    It sure would help Melissa and may thanks for all of your research

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  • chef127
    chef127 Member Posts: 891
    edited April 2016

    I went to see my MO and all is well?

    I asked about the Ki67 and she said "we don't put much creedance in that gene". the oncodx always includes that # in the score so to me it is important. "Its only one factor in the 21 genes tested" "The Ki67 is NOT in healthy tissue of the breast". At that point I gave up because I don't think she had a clue. Her answers were not definitive enough for me so I'm waiting for further research.

    MellisaDallas, I know the constant monitoring is a PITA. I wish my benign lump was taken more seriously by me and the drs. I don't think I'd be here if we caught it before it became invasive??????MY bad.

    xoxMaureen

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited April 2016

    Chef, clearly she doesn't. KI-67 is a nuclear antigen (not a gene) that can be used to measure cell proliferation. I don't think she is understanding the premise of the research study

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