ER pos. with PR neg. tumors

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MameMe
MameMe Member Posts: 425
edited June 2014 in IDC (Invasive Ductal Carcinoma)

Hello, I am doing some informal research and thinking about elements in my path report.

1) I have noticed some recent studies that seem to be saying that PR neg. with an ER pos. might behave differently from ER+ with PR +. Any observations, thoughts or resources out there about this?

2) I have a question about the marketing influence of the Oncotype DX at $4000 a whack, and that it is a very lucrative product that has effectively eclipsed the other proliferation indices. I am not convinced that the results of the Oncotype are sufficiently more helpful than the basic proliferation tests used to date, nor that the older measures of proliferation are as unreliable as Is sometimes implied.

3) Has the Luminal B category provided tx guidance for anyone, are oncs using the designation in practice? To what end?



Thanks for reading, I am in that interesting juncture, after surgery and before my appt. with the oncologist, wondering if others might be pondering these same issues.

Regards, Mame

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  • dlb823
    dlb823 Member Posts: 9,430
    edited February 2013

    MameMe, I have known several woman with ER+PR- bc, and have also heard from them that is can be trickier to treat, although I don't think I've ever heard or read anything to explain why.  So I think the best thing you can do is to find a highly experienced bc onc who is aware of the possible difference, and who has first hand experience treating women who are ER+PR-.

    As far as the Oncotype-DX, the main difference is it looks at something like 22 different markers to come up with a score.  Obviously, certain markers, such as an extremely high Ki67 score, might be an indication in itself that chemo would be beneficial.  But sometimes when stats look quite favorable, I've seen women come up with a relatively high Oncotype score, which I feel means there are factors previous ways of determining the need for chemo would have missed -- if that makes sense.

    Good luck with your onc appointment and tx decisions!   (((Hugs)))   Deanna

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  • doxie
    doxie Member Posts: 1,455
    edited February 2013

    MameMe,  My BS told me my very low PR and high Ki67 might tip me towards chemo.  I did research like you are now doing and estimated that my Oncotype would come out high intermediate.  My MO would have started me on chemo, but I wanted to have the Oncotype first for a pathology second opinion of sorts.  I was right and needed chemo.  The "second opinion" is also guiding treatment decisions afterwards, such as how hard I'll fight SEs to stay on an antihormonal.  Some women have pathology reports and Oncotype results that conflict to the point of making treatment decisions more difficult.  It's not always a win-win.

    I'm sure I'm Luminal B, but I've never had that conversation with my MO.  Treatment would have been the same regardless.  Seeing "Luminal B" tips me to read that research paper, though.

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  • NancyHB
    NancyHB Member Posts: 1,512
    edited February 2013

    Mame,

    Based on my original dx - Stage 1a, Grade 2 IDC - my MO asked me to "consider doing chemo" but said it was my choice.  I had favorable statistics - negative nodes, no LVI, pretty straight-forward ER+/PR+/HER2- BC.  But my Oncotype score came back at 42, and my PR changed from + to -, and my ER dropped considerably, and my whole treatment plan changed.  So I have faith in the Oncotype test, because it showed us things we never would have known (or hazard to guess) based on my initial diagnosis.

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  • pebee
    pebee Member Posts: 317
    edited February 2013

    There are several of us on this board - and there is a thread with the research about the differences.  For the most part, we will be treated like ER+PR+, however, there will be differences in our survival rate and outcomes.

    I think we are probably closer to TN then to ER+PR+, but that is my wholly unscientific opinion.

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  • Pessa
    Pessa Member Posts: 519
    edited February 2013

    Is that what the studies show?

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  • MameMe
    MameMe Member Posts: 425
    edited February 2013

    I appreciate your responses, its so helpful to just be able to ask questions and throw some ideas around with people who have a similar set of concerns. Its a funny spot, getting catapulted into the cancer treatment world where the concepts, language, research and providers are all new, and the decisions to be made are really, really important. Makes me jumpy at times. I seem to have a day or two of tension, irritability, and suspicious doubt, then it sorta resolves and I am back to my more normal, easy going self. This seems to be a feature of my process since diagnosis in mid-December.

    PB, Nancy, Doxie and dlb, thank you for your thoughts. I have given the go ahead to the onc amd Genomics Health to do the Oncotype Dx. I meet with the onc on 2/12, when hopefully she will have the result and I will have a bit more info to go on. I freaked out when I heard her say over the phone that chemo is in the picture. Freaked! My last cancer dx was so clearly a lazy, slow growing, relatively simple situation, that I had great confidence in minimizing my treatment efforts. This one is just different enough to get my attention and it really startled me to get that this is potentially more serious.

    Anyway, its morning, the sun is out, I need to get dressed and do my hair and makeup and get to work. For today, I feel I can set aside the troublesome thoughts a bit more, thanks to your kind responses.

    Warmly, Mame

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  • MameMe
    MameMe Member Posts: 425
    edited February 2013

    We just got socked with a couple of feet of snow, and its still coming down, so I have been home all day and yesterday. Reading more in this list serve is bringing up more questions. I'd like to know more about the treatment paths for ER+/PR-. The more people who can share their data and plans, the better. NancyHB, for example, had a surprisingly high Oncotype, and it affected treatment quite radically. Her blog on Wordpress is such a realistic, inspiring, honest view of this wretched affliction: thank you Nancy for taking the time and risking being so candid.

    Pebee, I tend to agree with you about ER+/PR- leaning more toward TNeg than towards Luminal A. The more I read here, the more I notice that. What's odd is that it still seems quite new to see it that way.

    Pessa, what are you thinking about this stuff?
    I can add to my dx "Mib proliferation rate > 20, high"



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  • Pessa
    Pessa Member Posts: 519
    edited February 2013

    When I asked my MO about the significance of the PR - she said that they do not know (this was 3 years ago at the time of my diagnosis).  I had chemo due to an oncotype score of 28 (gray area.  MO left the decision to me and I chose to have chemo as well as a BMX). 

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  • Strike_Two
    Strike_Two Member Posts: 92
    edited February 2013

    Just wanted to add that my oncologist also believes that the data out there is conflicting as to "what" a PR- status means.  

    If that's the case, I'm going to consider it "a wash" for now.   If the data is confusing, it doesn't seem like our prognosis would be that much worse than ER+/PR+ or the data would be clearer.  Think positive!

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  • mammalou
    mammalou Member Posts: 823
    edited February 2013

    My MO thinks that the important thing is the er+ is the most important. Here is one study I've read.



    http://jco.ascopubs.org/content/25/30/4772.full

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