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Very, very interesting study on ILC

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jessie123
jessie123 Member Posts: 134

Invasive lobular carcinomas (ILCs) account for 10–15% of all breast cancers. They are characterized by an elevated endocrine responsiveness and by a long lasting risk of relapse over time. Here we report for the first time an analysis of clinical and pathological features associated with the risk ...

I hope that I transferred this correctly. Basically this study talks about the importance of your KI67 score and long term recurrence risk. The really good news is they didn't find nodal status as important.

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  • ShetlandPony
    ShetlandPony Member Posts: 3,063
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    Jessie, can you tell us the title of the article?

  • OnTarget
    OnTarget Member Posts: 124
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    Well not as exciting news for me with a KI67 of 40!

  • nadinem
    nadinem Member Posts: 3
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    I tried to post a link that didn't need to go through Facebook, but it says I can't post links at this time. What are the rules?

    Nadine

  • minustwo
    minustwo Member Posts: 13,147
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    Nadine - I don't know but you can PM the moderators.

  • AnnC2019
    AnnC2019 Member Posts: 93
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    Thanks for this article. I don’t think Ki67 is referenced anywhere on my reports.

  • claireinaz
    claireinaz Member Posts: 681
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    Anne, mine (K167) isn't listed or given anywhere either. Would I have even been given one in 2011, I wonder.

    I try not to get too caught up in these reports since I'm already doing what I can to keep recurrence at bay. I can't change the fact that I had ILC, the size of tumor, or + nodes. I see they weren't actually able to use endocrine therapy research in this study, and for me that helps me with some positive thought: because I have been on AIs for 8 years now, I want to believe I've lowered my DM recurrence rate later on. Since the study doesn't tell me what more I can do, or take, or pursue to keep myself safe from recurrence, I let a lot of these articles go--although I'm not discounting that they might help someone else.

    Claire in AZ

  • wallycat
    wallycat Member Posts: 1,300
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    I'm with Claire....I also did not get a Ki-67 score and I really do not want to go back and look---my doc is not eager to have me scanned and I can't get mammograms since I have no boobs, so it is a symptom-watch vigilance.

    None of us expected to get cancer and many of us were "doing all the right stuff" but we are still here....so I think some of us will be lucky to not see a recurrence despite what we know or what we do. Cancer is a crapshoot.


  • trinigirl50
    trinigirl50 Member Posts: 158
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    Well I always notice that none of the studies ever include anyone with more than 10 positive nodes. Which makes me laugh - does that mean we don't count or are we written off immediately? Anyway, I was happy to see that nodal status or PGR status in ILC wasn't as much a prognostic factor for late reoccurrence. Not that it changes anything of course. Interestingly enough (and despite the prognosis) the group of high risk women based on CTS5 (all 3 of them) did not have any recurrence. I would presume that those 3 high risk women were taking their AIs religiously and had chemo, because that's what you do when you are high risk. So there you go.

  • wallycat
    wallycat Member Posts: 1,300
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    They also only checked 8.9 years out, so the 10 year window.....do they know if this trend follows after 10 years? They didn't know after 5, so maybe they don't know specifics about after 10 years.

    I keep hoping better, more reliable treatments (CURE!) come along so we don't have to sit here, frightened of our destiny.


  • jessie123
    jessie123 Member Posts: 134
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    The reason it does help me is that I have refused estrogen blocking therapy (AI's). My surgery was last Feb. I am old (70) and live alone with no living family. I already have osteopenia -- I am more worried about the osteoporosis and the therapy for it. I have had periodontal disease since my 30's and because I have seen the dentist every 3 months since then I just recently lost my first tooth. My oral surgeon said he won't pull a tooth until a patient has been off fosamax for 6 months. How to you live with a tooth ache for 6 months or even 3 months. If I break a hip I don't have family to come help. Both of my parents broke their hip in their later years. Also both had dementia ( I cared for them in my home) I have no one to help me if I break a hip due to osteoporosis. I am very worried about not taking the Al ---- that is why I'm doing so much reading on prognostic factors. A test that I will privately pay for when I see the oncologist in two weeks is a test for circulating tumor cells. That's also prognostic. I know most people don't have a recurrence, but this decision not to take the Al is very stressful. I was a social worker with the elderly throughout my working days --- I know what happens to the elderly if they don't have attentive children. So if I can determine that my recurrence risk is truly low then I'll feel better about taking the risk of refusing the drugs

  • momand2kids
    momand2kids Member Posts: 118
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    I also don't think I got a KI67 report almost 12 years ago.... I wonder if that new analysis they do (cannot remember the name) but they did it at my last appointment-can give you some sense of what possibility of recurrence or DM is-- not oncotype, but something else.... anyway, nurse told me I was in teh very low range-- of course I know, as we all do, that recurrence can happen. I just like to think I did everything I coudl at the time with the information I had and doing the best I can now to live my best life- but I know I cannot prevent anything.... just going to keep moving forward.... all the best to everyone and happy new year!!!


  • mikamika
    mikamika Member Posts: 242
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    momand2kids,

    May I ask you about your choice of the AI? Did you take Femara only?

  • gracejoy
    gracejoy Member Posts: 21
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    Jessie thank you for posting this article. It is very encouraging.

    It is the first time someone published on ILC patients alone and late distance metastasis after 5 years. I am Molecular Biologist who work in Breast Cancer research in a lab but not in clinical settings.Therefore I see day to day how difficult for us to grow ILC cell lines luminal A-and B under the best conditions in tissue cultures as compare to triple negative IDC cell lines which doubles overnight. As an ILC breast cancer patient myself I always wondered about DM after 5 years. This paper confirmed that positive nodal status is important in first 5 years but no after 5 years for DM. Yet Levels of KI67 determines DM after 5 years. Oncotype DX gene profile which determines DM risk at 10 years it includes KI67 measurement in their calculations. if Oncotype is low risk then your KI67 level is low too. Some of you are writing I don’t know my KI76 level but if you have your Oncotype score as low risk then most likely your KI67 is low. If you never had Oncotype DX test done then when you first had your pathological report after surgery it will indicate what kind of ILC you have such as Classical ILC (most ILC patient has this kind) which normally has low KI67 and therefore grow very slowly (therefore not a good candidate for chemotherapy). But if you have pleormophic ILC then this kind grow very fast therefore KI67 is high and therefore they are recommended to have chemotherapy as they will respond well to it.

    I always wondered having a large BC mass and one positive node personally if I did right thing not to have chemotherapy. But having no DM first 5 years confirmed my medical oncologist being right in not recommending chemotherapy for me. Having a Classical ILC (as it grows very slowly) my MO told me it will not respond well to chemotherapy and he said you will only have 1-2 % benefits and 100 % of all the side effects. I am so thankful to my MO even more now after seeing this article that we did the right thing not to have chemotherapy in my case.

    Best to all my breast cancer sisters.

  • OnTarget
    OnTarget Member Posts: 124
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    My KI67 was 40 and I felt like it had to have some significance. I'm glad I chose to do chemo for whatever it is worth.

  • jessie123
    jessie123 Member Posts: 134
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    Gracejoy -- I'm so glad that this article was helpful --- that is what I was hoping the response would be ---- for those who were node positive to feel some relief. The article highlights the strong difference between IDC and ILC.

  • momand2kids
    momand2kids Member Posts: 118
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    Gracejoy-thanks for your information--


    Mika Mika-I did 5 years of femara and for the first 3 years I also did lupron because I was pre-menopausal.


  • mikamika
    mikamika Member Posts: 242
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    momand2kids, thank you!



  • wallycat
    wallycat Member Posts: 1,300
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    Gracejoy, so if you have intermediate oncotype, should you assume mid-range Ki score? And not sure how that would equate to the study.....


  • gracejoy
    gracejoy Member Posts: 21
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    Wallycat, one cannot say it with certainty that if you have intermediate Oncotype score like 20 this means mid range Ki-67 levels but one can assume so. Because Oncotype measures 21 genes among them one of them is Ki-67 and come up with a score.

    I wonder if your medical oncologist can be able to request your Ki-67 levels from Oncotype DX company.

    In this article they consider Ki-67 value < 20% (low) and ≥ 20%(high).

    For example, my Oncotype DX score was 16 (low) and my pathologist independently counted my Ki-67 level ın my breast cancer tissue on a slide shortly after my initial surgery as less than 15 which is also considered as low

  • Gudrun
    Gudrun Member Posts: 93
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    Gracejoy, thank you very much for your clarifications on this study, which brings such hope to node positives after having achieved 5 years.

    However, having finished 6 years being node negative with a Ki67 of 20% personally, I do not know what my odds are. On my doctor's advice I stopped AI therapy after a bit more than 5 years.

    Best wishes to you and all of you. G

  • wallycat
    wallycat Member Posts: 1,300
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    It will be 13 years starting april, so not sure there is any value to know anymore. I'm sad to say that in my head, I just assume somewhere down the road I will have a recurrence. I hope I am wrong. Strange this study did not have an intermediate grouping. If my oncotype score matches my ki, then I am sitting on the fence, LOL.


  • claireinaz
    claireinaz Member Posts: 681
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    Wallycat, you and I are similar in that we've simply accepted that whatever happens (cancer or no) will maybe happen, regardless of how many studies are done like this. I know that my + node status pushes me into high risk. Known that since the beginning. I know that ILC recurs later and I'm facing that too, also not something I'm happy about but can't change it.

    I am interested in any research like "longer AI use results in higher survival rate", etc. which seems to be truer than ever before according to many studies. I'm happy about that since I've been taking one now for nearly 8 years. I think mostly I just try to live my life in the moment (sometimes difficult but not impossible with cancer PTSD) and continue to do everything I can to care for my health. Right now I'm in the middle of a 30 day yoga challenge-30 yoga classes in 30 days. It's good for my body and PTSD both, and something I CAN do.

    Big love to everyone and Happy New Year-

    Claire in AZ


  • wallycat
    wallycat Member Posts: 1,300
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    Claire, I just posted an "inspiring story" on the clinical trials board. "They" can say anything and tweak or sort through studies, but in the end, we are all an experiment of one.

    The link I posted was about a woman with breast cancer that thought all was great....then years later, developed ovarian cancer that spread. The docs did what they could back then and gave her 6 months to live. She's 31 years out and still here.

    It is wise to learn about options and challenges and the journey forward with what it may hold, but ultimately, many of us never thought we'd be here because we did all the healthy, careful things already so failed at those statistics.

  • momand2kids
    momand2kids Member Posts: 118
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    Claire and Wally

    I do think that as time goes on, the reality is that it really is a crapshoot- like so many others, I was not a "candidate" for breast cancer. What I can say is that it certainly prepared me for the subsequent thryoid cancer then melanoma (also things I would not be a "candidate" for). I have never worried too much (after the first year) about bc returning- I did all I could-but I am a realist and I know now that any damn thing can happen. But when I think I might go down a rabbit hole or read a new study that does not exactly line up with my stats, I am reminded of what someone on the Stage 4 board once posted which was something like" if you worry . about recurrence and it does not happen, you will have wasted all that . time. If you worry about recurrence and it does happen, you were not able to control it anyway" . something like that-I am paraphrasing..

    The other thing is that while all of the data and new studies are very helpful and I think will make huge differences going foward (think Tailor X) for those of us who have already made treatment decisions and executed, all we could do was make the best choice at the time with the information we had. I know after Tailor x I was relieved that I could see that I had made a good decision about having chemo-- and then when the recurrence scales could be done in onc;s office (I forget what it is called) I was relieved to see my recurrence or DM was really low. But then I will meet someone who will have had an entirely different situation and have moved to stage 4.... so I am not a Pollyanna about this--- but . I know the odds are low, so I try to focus there...


    I love the idea of 30 days of yoga!!!!


    Happiest of new years


  • claireinaz
    claireinaz Member Posts: 681
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    Hi Momand2kids-

    Agree with everything you've said; thanks for the yoga encouragement! I get 5 free classes if I complete the challenge so I'm motivated. Jessie123 I didn't mean that I didn't appreciate the sharing of information, either! We never know what study might help someone, for sure. Thank you!

    Claire in AZ


  • trinigirl50
    trinigirl50 Member Posts: 158
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    just popping back in to say the MOST interesting thing about the study was that after 8.7 years median (meaning more women were closer to 10 years out if everyone was at least 5 years out) 89% of the women did not have any DMs.

    That means that MOST women will not develop mets for at least 10 years. And of course I am hoping that will remain the trend over 20 years as well.

  • Sandiegohoneybee
    Sandiegohoneybee Member Posts: 6
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    have no idea why thetdid not do a ki67 on me. I’m Er and her2 positive

  • jessie123
    jessie123 Member Posts: 134
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    I have been doing so much reading --- evidently Ki-67 can vary throughout different parts of the tumor. That explains why my ki67 was 6 after biopsy, but (I think) 11 after surgery. I'm going to call the Onco people tomorrow to see what their sample showed.

  • karen1956
    karen1956 Member Posts: 4,531
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    Didn't read the article but skimming the posts it seems that since I don't have a Ki-67 score it might not be applicable....Also this month is 14 years since diagnosis. I know in my heart of hearts, that I didn't everything I could treatment wise. I eat healthy, maintain a healthy weight, walk daily 30 - 60 minutes. Started on Prolia in September 2019 due to osteoporosis and the slight benefit in prevention of bone mets. I know in the back of my mind, the BC can return but it is not the first thing or last thing I think about daily. Every day without BC is another day without BC (a friend's husband had leukemia twice and stem cell transplant and that is what his oncologist says about the cancer).

    Wishing us all long healthy lives!!