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

seemaryrock
seemaryrock Member Posts: 12

Anyone else in this same boat? Would love input or sharing your experience. Feeling a little alone in this boat!

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Comments

  • balance
    balance Member Posts: 17
    edited September 2017

    As you can see from my stats, I'm paddling right beside you. I'm 5 years out...so far, so good.

  • kiks1
    kiks1 Member Posts: 118
    edited September 2017

    I am er 80% and pr 1%, her negative. It had always weighed heavy on my mind reading about how this can mean that the tumor is more aggressive. I had my ovaries out and started on aromasin since I have read that als can be more effective for pr negative patients. To be honest, my new normal is a lot more worrisome than my old normal. I jump at every pain and ache. I hang on to hope from long term survivors who have the same pathology like balance above.

  • balance
    balance Member Posts: 17
    edited September 2017

    Kiks - I was only 75% ER.

  • bravepoint
    bravepoint Member Posts: 232
    edited September 2017

    balance,

    Your profile is pretty similar to mine but I'm 3% ER +, PR- and HER-. Just started on Exemestane (Aromasin) today after trying Letrozole. It's great to see you are 5 years out!

  • balance
    balance Member Posts: 17
    edited September 2017

    Bump.

  • Desirr77
    Desirr77 Member Posts: 12
    edited September 2017

    I was ER 10% + and PR-. My tumour was retested on DNA basis and then it came back triple negative.

    When ER is slightly positive and PR is negative I would opt for a retest, because doing hormonal therapy for nothing is not that funny.

  • Mom_of_twins
    Mom_of_twins Member Posts: 124
    edited September 2017

    I am! I worry about this, too. I was 99% ER+ and ranged from 2-10% PR+ (two different labs did pathology). I did chemo first, and afterwards it's was totally PR-. It's very concerning, but I'm hoping that the AI is still effective.

    Did any of you above have the oncotype test? I always wondered what mine would've been, but it wasn't tested because I did chemo first

  • bravepoint
    bravepoint Member Posts: 232
    edited September 2017

    Desirr77 - How long after the first test did you repeat it? I was never offered that option but wish I had asked.


    Mom of twins - I didn't have an oncotype test. Not sure if they even do them in Canada. I think if you have positive lymph nodes then they don't offer it.

  • ruthbru
    ruthbru Member Posts: 46,712
    edited September 2017

    I was 'mildly positive' (11-25%). I did chemo (it was a big, fast growing tumor), radiation (since I had a lumpectomy), and 5 years of an anti-hormonal (which I was VERY glad was an option; but being only mildly estrogen positive, my doctors and I didn't have any qualms about stopping after the 5 year mark). Since I am now 10 years out, I would definitely say I made the correct treatment choices for me.

  • kcat2013
    kcat2013 Member Posts: 53
    edited September 2017

    I'm here, except I was Her2+. I'm 4 years out and still kicking :) But I do ponder from time to time how the negative Pr affected/will affect things.


  • Desirr77
    Desirr77 Member Posts: 12
    edited September 2017

    Dear bravepoint,

    I repeated the test six month after my initial diagnosis. I am from Germany and my obgyn wanted to know whether tamoxifen was useful for me. I am also palb2 positie which often goes along with triple negative tumours.


  • jenn70
    jenn70 Member Posts: 2
    edited October 2017

    I am PR negative, ER positive and HER negative. I did Onco test, score was 26. Did not have chemo since MD Anderson said that the onco test is not a good test for tumors as small as mine (5mm).

    Another oncologist had done the test before I went to MD Anderson.

    Still scared about the PR negative and wondering if I should have had chemo. No nodes involved, Stage 1B. I am on Arimidex.

  • meow13
    meow13 Member Posts: 1,363
    edited October 2017

    I was less than 1% pr, so pr- and 95% er +. I did 4 years AI drugs no chemo even though my oncodx was 34. I didn't have any positive nodes but 2 tumors each 1 cm, one idc and one ilc.

    6 years NED so far.

  • KNardo88
    KNardo88 Member Posts: 3
    edited October 2017

    Hi! I am 20% ER+, PR-, HER2-. I was dx'd April of last year when I was 27. I had a double mastectomy and 4 rounds of AC chemo. I was node negative. I now am on Lupron and Femara. I, too, felt very alone with the single-hormone diagnosis and was very afraid when reading about the aggressive nature of these types of tumors but as you will see, no two tumors are alike and that is why treatments are being tailored to each patient these days. I am still only a year out of chemo but it gets easier every day. I hope you are doing well! Keep me posted <3

  • Maggieanne84
    Maggieanne84 Member Posts: 6
    edited November 2017

    I am 90% ER+ PR-(0%) Her2-. Are these types of tumors resistant to any treatment does anyone know?

  • JuniperCat
    JuniperCat Member Posts: 392
    edited November 2017

    Maggieanne, that’s an interesting question... I’m hoping someone will provide information.

  • hopeful82014
    hopeful82014 Member Posts: 887
    edited November 2017

    "I didn't have an oncotype test. Not sure if they even do them in Canada. I think if you have positive lymph nodes then they don't offer it."

    Bravepoint - yes, the Oncotype DX is done in Canada, although I think each province has its own criteria for use. Oncotype DX can be and is used for node positive patients in the US and most countries. I can't speak for its use in Canada.

  • mudd
    mudd Member Posts: 26
    edited November 2017

    I'm also ER+, PR- and HER2- and all my doctors said they weren't concerned with the PR value but the more I read about it, the more nervous I get. Waiting for my Oncotype DX results. Does the PR- affect that?

  • blueshine
    blueshine Member Posts: 233
    edited November 2017

    I have the same hormone receptors like you - er+,pr-,/her2 -

    When they test my genes , it show that I have very rear gean mutation, only 100 people in the world have

    I hope it help

  • meow13
    meow13 Member Posts: 1,363
    edited November 2017

    I think my oncodx score was high due to my absence of pr, less than 1%. They wanted to do chemo but I chose AI drugs which seem to effective in our case, I was 95% er positive.

  • Maggieanne84
    Maggieanne84 Member Posts: 6
    edited November 2017

    I am pre-menopausal so they did not offer me anything for treatment other than chemo and radiation. I am only 33. Just wondering about tumor resistance because the information on these types of tumors is small. And I want to be around for my 6 kiddos as long as possible.

  • MameMe
    MameMe Member Posts: 215
    edited November 2017

    Just saw this topic, I have wondered about this myself. My second episode of bc was 10 years after the first, and was er+, pr-, her2-. Opposite side, slightly higher grade. I did not do tamoxifen for more than 6 weeks after the first episode, due to side effects. I would try to manage that and do the five years if I had a do-over. I took the oncotype in 2012, and it came outlow risk, but since I had not done an ai, it was probably not valid. I watch closely when I see others with er+, pr-. I just wonder if its more significant than is generally said. I'd like to hear as much as possible from others with pr-.

  • ruthbru
    ruthbru Member Posts: 46,712
    edited November 2017

    I did chemo, rads & 5 years of Arimidex (as recommended by my doctor for my stage/grade etc.) I wanted to cover all the bases I could. So far, so good.......

  • DagnyT
    DagnyT Member Posts: 18
    edited December 2017

    Hi all,

    I am going to see my bs for the first time tomorrow after getting my biopsy results on Friday. So I have been pouring over my report getting all my questions ready ....I am 100% ER+, 10%PR+ and HER2-. I didn't even know this was something to ask about....so glad I found this thread. I will inquire specifically about this and report back to you guys with anything I learn. I'm going to Dana Farber, so I hope I will be in good hands....although I realize that it is probably the oncologist more than the surgeon who will be able to answer this kind of question.


  • Aaussiegal
    Aaussiegal Member Posts: 1
    edited December 2017

    I’m new here. Can I ask why is everyone worried about being PR negative? I’m mildly ER positive PR and HER Negative.

  • StubbornDog
    StubbornDog Member Posts: 20
    edited December 2017

    Hi, I am new here (been lurking for a month or so), with surgery this Friday. I am 10% ER+, PR- HER2- grade 3 IDC/DCIS. Glad to see some positive stories! I have already been told I will very likely (95% chance) have chemo since this is almost a triple negative, but they won't know for sure until they do the pathology on the tumor and get the lymph node results.

  • moderators
    moderators Posts: 7,684
    edited December 2017

    Hi Aaussiegal and StubbornDo, and welcome to the Community! Sorry you have to be here, but we're super glad that you've found us! If you need help navigating the forums, or have a question you don't see posted already, please don't hesitate to reach out to us via the private message function. We're here for you!

    StubbornDog, good luck with surgery!

    Best wishes,

    The Mods

  • ruthbru
    ruthbru Member Posts: 46,712
    edited December 2017

    Aasussie, I think being PR negative bothers people because it more rare. I don't think doctors really know the impact it may, or may not, have on how effective anti-hormonals are etc. My feeling is that since I can't do anything about it, I don't worry about it.

  • wintersocks
    wintersocks Member Posts: 434
    edited December 2017

    Is er+ 'a less common kind of cancer?' I am minus everything else and 100% oestrogen positive. I have never heard that this is a less common type. Does anyone understand the implication of being pr -

  • bravepoint
    bravepoint Member Posts: 232
    edited December 2017

    Stubborndog - You have a similar diagnosis to me but I am only 3% ER +. Good luck with your surgery!