Topic: Long term "high oncotype test" survivors

Jun 17, 2014 06:16AM NancyHB wrote:

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.

Jun 17, 2014 10:49AM Warrior_Woman wrote:

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.  

Jun 17, 2014 02:49PM QuinnCat wrote:

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!

Jun 17, 2014 06:13PM Meow13 wrote:

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.

Jun 17, 2014 06:47PM QuinnCat wrote:

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!

Jul 16, 2014 01:06AM squidess wrote:

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

Jul 17, 2014 09:21PM Warrior_Woman wrote:

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.  

Jul 17, 2014 09:39PM Warrior_Woman wrote:

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!

Jul 18, 2014 10:25AM - edited Jul 18, 2014 10:48AM by NancyHB

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.

Jul 19, 2014 12:03AM Meow13 wrote:

Well Nancy we are still ok even though our oncodx was high. I'd say that was good no r eoccurance praise the lord

Jul 19, 2014 06:37PM Tomboy wrote:

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.

Jul 21, 2014 08:47PM NancyHB wrote:

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.

Dec 15, 2014 08:44PM Runnergirl36 wrote:

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.

Dec 19, 2014 03:00PM Hopeful82014 wrote:

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.

Dec 19, 2014 03:39PM - edited Dec 19, 2014 03:41PM by Hopeful82014

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.