Any er+/pr- out there?

Rachel1
Rachel1 Member Posts: 363

I am er+/pr- with 7 nodes + and IDC.  I came across an article that says we have a worse prognosis.  Are there any long termers out there?? Why is it a worse prognosis? 

Rachel 

Comments

  • pebee
    pebee Member Posts: 317
    edited September 2012

    Hi Rachel1 - It has to do with the pathway for estrogen.  I just bumped our thread up.

  • kindone
    kindone Member Posts: 523
    edited September 2012

    Rachel1, I am also er+pr-her-.  I also her heard we have a worse prognosis.  I don't know why.  But I was DX 11-29-07.   I am doing very well.  Best of Luck to you.

  • kathleen1966
    kathleen1966 Member Posts: 793
    edited September 2012

    I read that this only means you are really considered triple negative unless you are also Her2+, and then you will have Herceptin.  The anti-hormone drugs will not be effective so you will not have the benefit of tamoxifen. I read an article on this and thought I had copied it to paste here, but it didn't work.  I didn't like reading worse prognosis in the article though.  I thought it was a bit mis-leading and made it sound like this combination was really bad.  I was told that having ER+ PR+ was the best type of breast cancer to have, as it is slower growing and usually not as aggressive and has the benefit of tamoxifen. This only means that your cancer acts more like a hormone negative cancer, more aggressive.  It doesn't necessarily mean that you have a worst prognosis. It's not good to have hope taken away by reading the words "worse prognosis"-not written by you, I am saying reading this in print in research.  Your treatment will just be more aggressive. You chances are as good as an ER+ PR+ cancer in my opinion. So don't lose hope!!! The article also claimed that being ER- and PR+ was clinically not possible and would likely be caused by an error in pathology. I had this (two different pathology reports) and was told that clinically I am PR-.  The article also claimed that the ER+ could also be an error if you are PR-.  I assume this would mean that you are a low ER+. How frustrating this can all be!!!!I will try to locate the article and paste it again!  

  • luckypenny
    luckypenny Member Posts: 150
    edited September 2012

    I am a bit confused then. I am er+ and pr- and her2- I was told that I am 70% er+ and only 5% pr which is very weak and so considered pr - I have not been told that I am really considered triple negative at all. I am also not weakly er+. My treatment was standard. 8 act. And 33 radiation Now on femara Metformin and zometa. I had two pathology reports biopsy and surgical and both were same in terms of er + pr- and her2-

  • kira1234
    kira1234 Member Posts: 3,091
    edited September 2012

    I'm also er+ like 95%. My path report had me 34% pr+, but the oncotype test had me pr-. I'm on Aromasin for the ER+, so no you are not triple negative.

  • Bugs
    Bugs Member Posts: 1,719
    edited September 2012

    I've never been told I was triple negative.  I've always heard the estrogen receptor status was the most important of the two and that is how they treat you.  I've also not heard that is has a worse prognosis, although I refuse to think about "what is worse/what is better".   It is just a tool for treatment options. 

  • Rachel1
    Rachel1 Member Posts: 363
    edited September 2012

    I am so glad to hear what you all have to say. My onc. said I was IDC, 4.5 cm., grade 3, er+/pr- (however, he said he thought the pr was a false negative) and node positive. I'm not sure why my onc. thought that. I had told him that I had been using progesterone oil for at least a year before my dx. I had suspected that I was estrogen dominant and trying to balance things out. Will that effect pathology?  Then, my breast surgeon said she never heard of a false negative pr.  So for a couple of years I've been thinking I was er+ and pr+ because of the onc., but when the surgeon said she thought he was wrong, I kind of freaked.  

    I received dd A/C and dd taxotere x 8. I had 34 rads and an oomph. and bilateral mastectomy because I'm BRCA2+  Will an oomph help where tamoxifen won't?  I've been on tamox, for two years and begin an aromotase enhib. in October. I'm not doing metformin or zometa -- are other er+/pr- women doing that?  Thanks for the discussion.

    Hugs,

    Rachel 

  • lanagraves
    lanagraves Member Posts: 596
    edited September 2012

    I was initially told I was ER+, PR+, HER2-. After inquiring more specifically of my MO, he tells me I am actually 90% ER+, but only 5% PR+, and that I am actually HER2 1+ (which is considered negative). I'm glad I asked or I would never have known. I don't know if it makes a difference in treatment, but I would like the option. He is so going to get tired of me asking questions, but I don't care. I'm going to ask anyway.

  • many
    many Member Posts: 254
    edited September 2012

    Any thing higher than 1% is considered positive

  • Rachel1
    Rachel1 Member Posts: 363
    edited September 2012

    Are these the same white button mushrooms in the grocery store? I am taking dim 2 tabs twice a day. Thanks, Logan T.

  • TectonicShift
    TectonicShift Member Posts: 752
    edited November 2018

    Hi, Rachel. My onc also says there is no such thing as ER+ / PR-

    He says it's false negative or faulty testing or something

    And that PR and ER go hand in hand in terms of postiive and negative (I can't remember exactly how he put it but that was the gist) 

  • dsgirl
    dsgirl Member Posts: 276
    edited September 2012

    Hi Rachel1

    I was told I was er+and pr- so I do think that happens. I do remember the reports saying er+ was a good sign and pr- not so go good for treatment options, I don't think it meant prognosis. I am 3 years out and doing good.

    Best to you

    dsgirl

  • ali68
    ali68 Member Posts: 1,383
    edited September 2012

    My surgeon says i'm like triple negative because my ER is 60%, onc says I'm not.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited September 2012

    You onc. is correct.

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