Highly ER + (over 90%) and PR - (3%) and HER2 -

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Marguin
Marguin Member Posts: 21

I am 61 and recently diagnosed IDC Stage 2b, Grade 2, and high KI-67. Is there anyone with similar or almost similar stats? I'm starting to research and will get 2nd and 3rd medical opinions.

I'm concerned about the negative progesterone and if that affects the effectiveness of endocrine therapy letrozole femara.

Besides that, I'd like to know if chemo therapy was recommended and if so, which protocol?

My core biopsy was a few weeks ago. I don't know if it's too late to get an Oncotype test for it but I understand from posts that PR - can raise the score to recommend chemo. Was that the case for you?

Were you recommended to have lumpectomy/radiation or mastectomy?

Also what tests did you have? Besides Oncotype, I've heard of Mammaprint, Foundation one, and Guardant 360. Others? Thank you.

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  • Beesie
    Beesie Member Posts: 12,240
    edited June 2020

    Although you have the 3% PR, this thread may be helpful:

    Topic: Single Hormone Receptor Positive -> ER+/PR-/HER2-


    .

    Edited to add: The Oncotype test is usually done on a sample from surgery - biopsy samples are often too small. So if you haven't had surgery yet it makes sense that the Oncotype hasn't been done yet. Ask your surgeon or MO if it is planned.

  • Murfy
    Murfy Member Posts: 342
    edited June 2020

    Hi Marguin: I also contribute to the thread above that Beesie recommended, but thought I'd let you know that my IDC had very similar stats (although I had zero PR) as you. I also had 2 DCIS lesions in breast, so chose unilateral mastectomy. High oncotype meant chemo and high ER means at least 5-yr exemestane (see profile below). I asked for at least 3 opinions (because I didn't like their answers); the high oncotype clinched it for me.

    But, all situations need to be looked at individually and your oncologist/surgeon/radiologist will have recommendations specific to you. After surgery, a complete pathology will be performed on tumor where you will get even more information, and a sample may be sent to Oncotype depending on what the docs find.

    In answer to your question about PR- or lo-PR and response to AI, some respond well to AI and others less so and that appears to depend on what caused your cancer cells to not have PR. But if you have ER, then AIs are usually recommended whether or not you have chemo.


  • Marguin
    Marguin Member Posts: 21
    edited June 2020

    Beesie, thanks for the link. I'll see if I can copy/paste my question on that thread to keep it all together.

    Murfy, thank you. I hope a deep dive into my pathology will present a generally clear way forward, but it seems fickle sometimes.

  • flashlight
    flashlight Member Posts: 698
    edited June 2020

    Beesie, Do all pathology reports include the percentage of the estrogen/progesterone in the tumor? I can't seem to find it. Why I am asking is that my new MO said my tumor was 60% positive for estrogen. That is something no one had mentioned before. I understand what you are saying about the Oncotype report and the progesterone. The pathology said negative and the Oncotype said 6.4 positive. The Oncotype report said I was 11.4 ER positive. Would the 60% be a guess since I am at the high end of the score?

  • LillyIsHere
    LillyIsHere Member Posts: 830
    edited June 2020

    Hi Ladies, my report said:

    ER: POSITIVE (90%, MODERATE)

    PR: NEGATIVE (<1%, STRONG)

    HER2: NEGATIVE (1+)

    I didn't hear anything in particular from MO. I don't even understand what Negative Strong means and HER2 1+. Does anyone know or has similar case?

  • Marguin
    Marguin Member Posts: 21
    edited June 2020

    Hi Lily, I didn't even notice strong and moderate in my report until you mentioned it. I did a quick google search but haven't found anything yet. When I find something or check with my MO I'll let know what I find out.

    I moved my original question to the thread Beesie posted above.

  • Totallytubular
    Totallytubular Member Posts: 62
    edited October 2020

    hello,

    this is an older post I see. I had progesterone negative cancer.. but the oncs said that the anti estrogen meds still work as you are estrogen positive. as an additional insurance I had cmi chemo 6 rounds. which is less strong. my Onco score was 21 and sometimes progesterone negative cancers can be more aggressive. I would consider chemo or getting advice for that. best of luck to you.

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