100% ER+ & PR+??? Anyone else?

MamaM
MamaM Member Posts: 80
edited March 2015 in ILC (Invasive Lobular Carcinoma)

I'm waiting on my Oncotype test after my DMX & wondering if anyone else is 100% ER & 100% PR?

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  • Jenwith4kids
    Jenwith4kids Member Posts: 635
    edited December 2014

    I am! Or, was... All done with active treatment. I've been on an AI since mid-September. I think the AI is the single most beneficial aspect of our treatment (not that I would have skipped any of the other parts!). Best wishes

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  • mary625
    mary625 Member Posts: 1,056
    edited December 2014

    80% ER+ and 100% PR+. Close.

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  • Lucca06
    Lucca06 Member Posts: 69
    edited December 2014

    I was told I was at diagnosis (not checked since), big tumour & multiple nodes. Coming up to 4 years and doing really well.

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  • cp418
    cp418 Member Posts: 7,079
    edited December 2014

    I am IDC 100% ER+, 100% PR+, Her2 neg.  Dx in 2006 stage 2a, 1/18 nodes.

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  • april485
    april485 Member Posts: 3,257
    edited December 2014

    Mine was >95% ER+ and 80%PR+..doesn't get much closer to 100% than that I guess...

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  • Annette_U
    Annette_U Member Posts: 111
    edited December 2014

    I was 100% ER and PR positive at diagnosis. I was diagnosed at 50 and my first chemo stopped my period and I had just stopped the birth control pill a month before my diagnosis. I am on Tomoxifen now and my doc still at almost 52 with testing showing I am well into menopause will not switch me to an AI. In fact she said 10 years on Tomox then 10 years on Femera. I wonder if I started taking Femera now or in the next year then maybe I would have a better chance at survival to 10=20 years. Do you think my Oncologist is being a bit hopeful?

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  • daisylover
    daisylover Member Posts: 310
    edited December 2014

    My tumor was 100% ER 100% PR and I did have a low Oncotype DX at 9. No chemo or radiation for me... They analyze many genes, though... Waiting for results is tough. Hope your results are a clear indication for chemo decision. Take care.

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  • Trvler
    Trvler Member Posts: 3,159
    edited January 2015

    How do you know? My path reports says 51-100% and strong on both. Does that mean I might be 100%?

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  • Annette_U
    Annette_U Member Posts: 111
    edited January 2015

    Tryler, I think your higher er/pr results mean that you are a great candidate for hormone therapy such as tomoxifen or other such blocker to help stop breast cancer from returning. Other tests like oncotype and - ki-67 will show how well chemotherapy would work on reducing your cancer burden.

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  • jenni__ca
    jenni__ca Member Posts: 461
    edited January 2015

    98% ER but only 2% PR ... i always was a bit strange

    i've been on Arimidex for 9.5 years .... scheduled to meet with onc soon as last meeting he said 10 years then stop the AI

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  • SoccerMom20
    SoccerMom20 Member Posts: 20
    edited February 2015


    I'm 100% ER and PR.  I just had a lumpectomy on 1/30.

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  • JohnSmith
    JohnSmith Member Posts: 651
    edited February 2015

    My wife is 95% ER+ and 95% PR+.

    As a side note, someone asked last summer why there isn't any Progesterone (PR) blocking drugs. We all know Tamoxifen blocks estrogen (ER), so what about Progesterone?
    It turns out that Tamoxifen is a Progesterone blocking drug as well. PR & ER are tied to each other. In a broad sense, PR is a subset of ER.
    PR is an estrogen regulated protein, so Tamoxifen not only blocks the Estrogen receptor (it's primary target), but also blocks the progesterone receptor in the process.
    If your estrogen receptor isn't working (or is low), you'll have an inactive (or low) progesterone receptor as well.

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  • TaniaE
    TaniaE Member Posts: 92
    edited February 2015

    95% ER and PR here as well. John Smith thank you for that piece of information. I quite often wondered how Tamoxifen worked on patients that had a PR component as well. My oncologist said that the higher your percentages are in way of ER and PR the better off you are. It must be because the anti hormonal treatment works better perhaps.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2015

    Close to 100%, which seemed to please my MO to no end when she told me. It seems that's better, at least in her view.

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  • Sunshineinky
    Sunshineinky Member Posts: 461
    edited February 2015
    I'm 100% ER and PR too. My only concern is how the know the tamoxifen is working!
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  • MagicalBean
    MagicalBean Member Posts: 362
    edited February 2015

    DCIS-100% ER+&PR+. Started Tamoxifen last month

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  • mary625
    mary625 Member Posts: 1,056
    edited February 2015

    What about the aromatase inhibitors and PR?

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  • Momine
    Momine Member Posts: 7,859
    edited February 2015

    100% ER+, 80% PR+, on femara 3.5 years so far, after having a partial hyster+ooph as part of my cancer fun time.

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  • grammakathy
    grammakathy Member Posts: 407
    edited February 2015

    100% ER and 100% PR

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  • Chloesmom
    Chloesmom Member Posts: 1,053
    edited February 2015

    Wouldn't be doing chemo now if PR wasn't neg and oncotype 25. Dr says AI only partially effective when just ER +.

    Glad if you don't have to go there.

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  • Trvler
    Trvler Member Posts: 3,159
    edited February 2015

    This is a really interesting topic. So higher is better? I wish I knew what my %'s were. My report just said strong and 51-100% on both.

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  • fluffycats
    fluffycats Member Posts: 35
    edited February 2015

    >90% on both

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  • JohnSmith
    JohnSmith Member Posts: 651
    edited March 2015

    I assume it's safe to say... the higher the ER+ & PR+ percentage, the better Tamoxifen works.

    I occasionally think about Tamoxifen resistance. Unfortunately, it can happen for a small subset.
    1. Have studies been done that indicate who is more likely to build resistance?
      • Essentially, is their any data that discusses the number of high ER+/PR+ percentage people that develop tamoxifen resistance?
      • And to take it a step further, have studies been done to compare tamoxifen resistance between those with a high ER+/PR+ percentage vs. low ER+/PR+ percentage?


    Has science advanced enough to answer these questions?

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  • cp418
    cp418 Member Posts: 7,079
    edited March 2015

    What I wonder about is the role of Androgens in breast cancer. I recall some recent articles discussing androgen receptors present in about 80% of hormone positive breast cancer.

    http://www.sciencedaily.com/releases/2014/06/14062...

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC341058...

    http://www.ncbi.nlm.nih.gov/pubmed/23647561


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  • gypsyjo
    gypsyjo Member Posts: 304
    edited March 2015

    100% Positive on both counts. Though it is thought to be good, the treatment SE scare. I have had TIAs and currently take a blood thinner eliminating some therapies. Heart conditions run in my family. I always thought heart would be what got me. And I have arthritis bad enough that I already have needed a surgery. I don't think there is a good answer for me, it feels like choose your poison.

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  • Giazuc
    Giazuc Member Posts: 44
    edited March 2015

    100% ER+, 90% PR+, oncodx score 12 so no chemo for me. Taking Tamoxifen for 5 or 10 years

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  • JohnSmith
    JohnSmith Member Posts: 651
    edited March 2015

    I skimmed down through the posts and it appears everyone here has a very high ER/PR percentage.

    Do you think the Tamoxifen side effects are more pronounced / noticeable with "high" ER/PR percentage people vs. those with much "lower" percentages. I only ask because the wife has gone through a litany of minor side effects (Skin Rashes, Sore throats, chronic nasal congestion / runny noses, etc) since starting Tamoxifen last Fall.

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  • TaniaE
    TaniaE Member Posts: 92
    edited March 2015

    That's an interesting question John Smith. I am currently taking Tamoxifen and had a very high ER/PR percentage. I started on it in July 2014 and the side effects I have are extreme hot flashes and a disturbed sleep pattern. I asked my oncologist about it when I last saw him but he assured me that it was normal. Haha easy for him to say. The way I look at it is if I get these side effects then hopefully it's doing its job.

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  • Trvler
    Trvler Member Posts: 3,159
    edited March 2015

    Great. lol. I will let you know my SE's when they happen because my numbers are very high as well.

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  • Trvler
    Trvler Member Posts: 3,159
    edited March 2015

    Maybe like we are requesting to add age, we could add a place that we could put percentage of ER/PR if +? Of course like age, it would be optional.

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