Long term "high oncotype test" survivors
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QuinnCat - Thank you for inquiring.
1st biopsy report showed ER + 70% & PR+ 90%
Surgical biopsy report showed ER+ 90% & PR+ 100%
Oncotype test showed me ER - with a score of 5.4 (6.5 needed for positive) and PR + with a score of 8.7.
I am confused about my luminal category as I thought I read that Luminal B can be PR+ and the ki67 (40%) was the big determinant. I am also not sitting well with the change in my ER status. I understand Genomic Labs tests differently from my other labs and thus the discrepancy. It just seems like a huge swing at ER 70-90% and then dropping to negative.
I feel like I need to sort this out in order to put this in its place in my life. Thank you for your help.
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WW - The hallmarks of Luminal B subtype are ER+ and PR-, with high proliferation:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3430090/
Given that you are still PR+, it's likely you do not have a Luminal B subtype. Have you talked with your onc about this? I have read there may be a test to determine subtype, but I know nothing about it.
The Oncotype test can and does change receptor status. My onc explained that pathology tests a piece of the tumor and receptor status comes from that particular place. It's like taking a bite Cherry Garcia and assuming there's cherry and chocolate in every single bite - that may happen but you could also get that random bite at the bottom that has nothing but ice cream. Oncotype grinds up the sample they get and tests the whole piece - so you're getting bits and pieces of cherry and chocolate in every spoonful. I have more faith in my receptor status after the test because it exposes the overall nature of my cancer as a whole, not just one little piece. Like you I went from 50% ER+/10% PR+ to PR- and barely ER+ (6.6 on that scale where they say 6.5 and below is negative). So my onc tends to consider me PR- but still says "any ER is ER+" so I was offered Tamoxifen.
It's one of the reasons I've wanted my ki-67 score for so long; I don't know what kind of proliferation I have. My path report simple says Grade 2 but doesn't explain why. I'm an info junkie so this will help me understand.
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Sorry for any cross-posting in case someone has already shared this from BCO Breaking News:
Oncotype DX® Breast Cancer Test Predicts Late Recurrence Five to 15 Years Out
New Data Presented at ASCO® Annual Meeting Suggest that Genomic Health's Oncotype DX Test May Help Identify Patients That Have the Greatest Opportunity to Benefit from Extended Hormonal Therapy
I don't quite understand how you interpret the scores.. Will take to my oncologist's visit next month. Any thoughts?
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Nancy - Thank you for the information. The article also states:
"The luminal B subtype represents both ER+ breast cancer with low PR levels and ER+ breast cancer with predicted worse outcome."
And this article http://www.ncbi.nlm.nih.gov/pubmed/19436038 states: "Expression of ER, progesterone receptor, and HER2 proteins and the Ki67 index appear to distinguish luminal A from luminal B breast cancer subtypes."
In other words, from what I am reading, proliferation rate is the big issue and Luminal B can be PR + or -.
I am so confused. I hope I am not putting misinformation out there. When I have asked any of my oncologists about this I don't get much of a response. Perhaps I need to push harder on it.
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WW - this is a great discussion! I'm on my stupid phone, though, and can't cut-and-paste the information I want from one of the articles (I'll do it later when I'm at home). You are right: proliferation is one component of Luminal B. My understanding (and I could be wrong, some of this is based on reading, some from my onc who declared me LB) is that very low or negative PR must also be considered as an important component, too, as the lack of PR in the cases creates a situation where the cancer is not responsive to hormone therapy (as TN cancer wouldn't respond). I hope this makes sense. Stupid smart phone. :-)
(Edited for clarity - typing on my phone is a challenge!!)
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WW - I can only, at this moment, comment about one thing you posted. PR can be positive or negative and still be luminal B. Mine was borderline positive in the Oncotype (the lower half of the confidence interval was negative) and my IHC was 5%. So in both cases, "positive," but in reality not very positive. How low PR has to be to be Lum B, I don't know. My MO said I was luminal B - which I'm sure also includes a Ki67 over....never can remember...13%? 12%? 13.5%? Sorry if this redundant...I'm in one of those moods where I can't think clearly!
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Nancy & QuinnCat - Thank you for your help in trying to sort this out with me...especially with phone typing. My PR is obviously high but with a 40% Ki67 I am getting blank stares from all of my docs. My surgeon doesn't pay attention to Ki67 and my MO said it just doesn't make sense with the nature of my tumor but when I came back with an Oncotype score of 24 they all took a step back. Nobody expected I'd need chemo. The good thing about Ki67, as I understand, is that it is very responsive to chemo.
Oh ladies, this is our lives. Scratching and clawing our way through this mess.
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I'm on exemestane and my dr. just said 5 years at the last visit. He was worried about my bone density but it turned out ok.I think the 10 years is just for tamoxifen. I have 2.5 years to go and can't wait to get off these pills. My oncoDx is 34 no chemo just hormone therapy.
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Anyone know about AFINITOR (Everolimu) tablets used with exemestane it says it doubles the progression free survival?
I am going to ask about this.
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WW - you might be in the best of both worlds. High Ki67 is best with chemo (I read one article where 55% Ki67 had the best response), but you also have ER+PR+ high working for you too!
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QuinnCat - Except Oncotype classified me as ER -! But I really appreciate your outlook. Not once since diagnosis have I thought I was in the best of both worlds. I'm going to try to think of it like that. Bottom line is I've done what I can...chemo, surgery, Tamoxifen.
Meow - It is my understanding that the 10 year guideline is for Tamoxifen with a switch to the AIs once post menopause. That is what my Onc has planned for me.
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I haven't read this thread for a month or so. Wow, lots of activity!
MsPharoah (love that nickname!), you asked a question that I just saw. I too am very high on the ER score and zippo on PR. My oncologist also said that the PR doesn't matter, but I think there's plenty of evidence that it does.
There is some evidence that AIs are better for ER+/PR- than tamoxifen. But like everything else, it is controversial. It showed up in one of the studies (ATAC, I believe) and then was discounted later on a re-analysis of the data by a different group of researchers.
The original data showed a HUGE benefit of arimidex over tamoxifen for ER+/PR-. The HR was around .26 which is great. Later on, another group of researchers said they did not find this relationship in the same set of data. Also, Paik (one of the main researchers on oncotype dx) at some point said that it was the degree of ER positivity that predicts response to tamoxifen. A high ER+ would be very likely to respond to it. I'm not sure I agree with that. If you search a bit, you can probably dig up the original study and decide for yourself.
I chose to go ahead and do the AI. I had my ovaries out so that was a possibility for me. My oncotype score was high and my mother had ovarian cancer, so I was happy to rip those little puppies out.
~Squidess
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So I finally got the call from my MO today with my Ki-67 score - 50%. Apparently no one was surprised, given my Oncotype score. I suspect I knew it would be high, perhaps not quite that high. My MO says, had they had this information when first biopsied I would have been graded at 3 instead of 2...but that's neither here nor there now. Positive news in all of this, though, is that high proliferation means chemo is very beneficial, and that feels very good. Definitely nice to have that last piece of the puzzle, though...
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Nancy - My ki67 was 40% and my Oncotype was 24. Are you referring to Grade 3 rather than Stage 3? ki67 would not change your stage.
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WW - you are right. I meant grade (*facepalm*). My fingers spoke quicker than my brain; I've edited my post for clarity. Thanks for pointing that out.
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That's interesting, Nancy. In my case I'm confused because several path reports gave my mitotic rate a 1 keeping me in the Grade 2 class and yet my ki67 is high. Remember that there is a lot of controversy about the accuracy and significance of ki67. But I too hope I ate up that chemo!
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Nancy- I'm glad you were finally able to get that piece of the puzzle! I'm wondering, now, how the Nottingham system determines mitotic rate if not via Ki67? Was your Ki67 previously done but not recorded by the Pathologist in the biopsy report or was it just not done?
Seems like an odd statement that you would otherwise be graded 3 if that Ki67 had been reported? They're either using protocol for Nottingham and the Grade 2 was an honest Grade 2 or there was a mistake in the original Ki67 leading to a Grade 2 or Ki67 is simply living up to it's reputation as a difficult to reproduce test?
As my Ki67 was 60% (we continue to maintain our very similar pathologies at least!), I'm curious if your MO's actually said that to you about chemo working well for high Ki67 levels or was that from your previous knowledge? I remember reading one journal article relating efficacy of chemo and Ki67 and 55% seemed to be the ideal number. I suppose the trade off is, and why the words "poor prognosis" were attached to my 60% (and in my mind I'd like to think they were using some 1968 report template for keeping such a scarey phrase in a report read by the patient), the tumor had more opportunity in a given time span to metastasize by growing so quickly. I'd like to think (yes, this is wishful thinking) that we had the best type of tumors because they respond well to chemo (we hope) as long as they were caught early enough,
By the way, was your LVI reported back to you on your surgical pathology??
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Quinn - yes, we do seem to continue on similar journeys. I remembered your score was high, but didn't remember just how high. My initial path report is very sparse and lacking in information. My surgical wasn't much more informative. I do not have a breakdown of how my grade was achieved, just that I am Grade 2. There is no mention of LVI (either positive of negative) anywhere. And while I am node-negative, four of my nodes have comments such as, "multiple cells in one, no gross lesion" which would indicate CTC but not micromets (my surgeon tells me "not to worry" and won't discuss it so I had to try and figure that one out on my own - any thoughts??) Now that I know what I know, I recognize the reports say very little (or at least don't tell me what I want to know).
I put the Grade out there and she agreed. I said, "if we'd known then what we know now (meaning Onco and Ki67), would I have been considered Grade 3?" She said they all had discussed the recent result and felt it would have "been considered higher grade" - but then we got on another topic about treatment and I didn't get anything more. Perhaps that's what she was referring to? In my mind that makes sense - ki67 refers to the % of cells in preparation for growth and division and mitosis is the rate of growth - so why wouldn't there be a correlation? Perhaps I need to do more research.
From research here and other places I know that chemo likes fast-growing cancer cells. My MO did say, "this test confirms that we've made the right decisions about treatment and investigating worrisome issues, and we'll continue to do so in the future." We can only hope it was caught early enough.
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oh, and before I forget - my original path did not include ki67. The lab only started doing it a few months ago. So what grade is determined on (and it's not in my path report) is beyond me.
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Well Nancy we are still ok even though our oncodx was high. I'd say that was good no r eoccurance praise the lord
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Nancy- I don't know what CTC is? Nothing was ever mentioned about my nodes having anything, otherwise I might have researched nodes ad infinitum 😄
I have had one lingering, slightly anguishing worry about my SNB, well two things. It was done a month before my BMX ( it was Xmas and I wasn't able to get a surgery time til late January so when she had a cancellation I was literally called the day before that opening to drive 366 miles for my SNB the next day.) Ok, now I remember; she thought my choice of lumpectomy vs bmx was based on whether I would need radiation (the idea of radiation was worse than chemo at the time, for m). Despite being brca2, my surgeon was still pushing for me to do a lumpectomy. Never got that! The other node event was the blue dye shot. I think I might have been the first guinea pig by that intern and it didn't take (it felt like nothing at the time so that didn't surprise me). When my surgeon later told me this she said not to worry, that she could still determine the sentinel node. I've always wondered about that!! I only had one of those too. And what about the month between SNB and BMX...could cancer have found another pathway out during that month?
For some reason these node issues never rose to the top, but it appears they still linger, like your ki67 for you, in my mind!
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ctc. circulating tumor cells? i was high ki67, luminal b, by the place i first did biopsies. 2nd place, where i was treated, refused to discuss.
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and, the tumor was small and slow growing. but when it went to my nodes, it went crazy! one was golf ball sized, and all were matted and bursting out of the nodes. i tested equivocal by two tests for her2, but they wanted to give it to me anyway. i still dont know if i am luminal b. my est was way high, pr barely pos. anybody help me out here? funny thing, i never felt those nodes! but now two years later, all these nodes are getting hard and bugging me and itching, from my ribcage to my armpit. imaging says nothing, biopsy says nothing, i am sure they think i am crazy, and i am starting to believe them. thanks
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Hi ladies, sorry I disappeared - the weekend was *beautiful* and we took our 8-year-old granddaughter to the balloon festival and had a picnic. Dangit - this is what I endured chemo and rads to be able to do! :-) So I enjoyed the heck out of our weekend, and had to think a little before I posted again.
kathec - yet, CTC means circulating tumor cells - except that I meant to type ITC - isolated tumor cells. THIS is why I shouldn't try to respond to posts on my stupid smart phone - the tiny screen makes me typo all over the place. SO - I had ISOLATED TUMOR CELLS in four of my lymph nodes. I apologize for the miscommunication (but kathec, you're so smart you knew what I was talking about even though it makes no sense!!! Bless you!!)
Quinn - Wow, I can certainly understand why you have unanswered questions that linger. You have reasonable questions that, probably, don't have answers (and that sucks). A month between SNB and BMX isn't all that long in Normal Days - but in Cancer Days, that's 30 days of opportunity for cancer-cell escape. I'm surprised the surgeon didn't do the SNB the day before your BMX, but it sounds like perhaps your surgeon believed you'd ultimately choose a lumpectomy?
It is so hard not to have all the answers in front of us; I sometimes fear the unknown perhaps even more than a recurrence. For those of us with high Oncotype scores, is there the feeling that we've already been told to expect recurrence (perhaps I'm the only one who heard that?); for me, I continue to pick apart my history to find some understanding. I thought I desperately needed to know my Ki67 - now that I have that, it only confirms what I knew before. I feel a little silly for pushing for the test now, but now I can stop beating that poor, dead and demolished horse.
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Squidess,
You may not be around much now - hope you're out having fun and enjoying the holidays - but I am still searching for a paper you mentioned: That study stated specifically that the survival curves for pr+ and pr- cross after somewhere around 6-8 years and that this needs further analysis.
If you are around, could you send the link?
Also, JCO in September published an overview of luminal B, which I don't have a link to but am happy to share if anyone wants it. Unfortunately, there's still little available to be summarized about efficacious treatment approaches beyond what we already know.
Best wishes, all.
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Hello! I too had a high Oncotype score so i would be curious as to what you have found. My original Path was 41% ER 17% PR and Her2 Negative. The Oncotype changed it from barely ER to PR and HER2 negative.. I did chemo and rads and meet with onco this week to most likely get the Tamoxiin. My Onco says they go by the Path testing and do not hold a lot to the Oncotype testing and they still consider me ER and PR positive.
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Notoday - I am interested in the Luminal B paper you mention!
My original path had me 90%ER 5%PR while the Oncotype report had me positive ER, though middling, not high and the PR was barely in the plus area. Still confused about the change in ER positivity and to this day I do not understand what this "middling" ER means....some of the cells have estrogen receptors and some don't or that all of the cells have ER receptors but weak? Anyone know? (Oncoscore high 30's)
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I, too, would be interested in the paper on Luminal B.
Quinn, that's an interesting question. I don't have any answers but I certainly think your MO should be willing to clarify that for you.
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Hopeful - I think I've asked my MO this question with an unsatisfying answer or the other option is I forgot what she said! Sometimes I find better answers here, not that I don't like my MO, I do.
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Glad to know you like your MO - that's such an important relationship, isn't it? And I hear you, Quinn, on the issue of asking the MO. Sometimes I feel as though my BS would be justified in presenting me with a bill for med. school tuition
since she's had to delve into so many rather esoteric topics in such depth with me! I will say that one thing I like about electronic communications with my team is that I have their answers in black and white to refer back to as needed. I wish more providers offered these systems.
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