I have a new diagnosis!

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geewhiz
geewhiz Member Posts: 1,439
edited June 2014 in Stage III Breast Cancer

My original pathology showed er/pr negative. I am getting ready to go to Sloan Kettering for a second opinion on a reexcision for clean margins and the timing of radiation. They requested all records and picked up on something "curious" in my path report. I told my onc, and mastectomy slides were retested...I am no longer er/pr negative..they were false negatives. I am now triple positive. It is such a crazy feeling to think I have been learning all about er/pr negative then to turn out triple positive. I feel like I have to start learning all over again!!!!!! Does anyone have any insight with this diagnosis? 

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  • weety
    weety Member Posts: 1,163
    edited April 2010

    No, I don't have any experience with my path results changing--gee whiz--you would never expect that one to happen!!!  But  . . . my path results came in as PR negative and ER only "weakly" positive.  Here's what my onc said about it.  She said she doesn't completely trust ER and PR results all the time because hormone receptors tend to be pretty frail and sometimes "break off" before the tumor is evaluated.  She said especially if the tumor sits for any length of time after a surgery (such as over a weekend after a Friday surgery--yep, mine was done on a Friday afternoon) that the results might come back lower than if it had been tested earlier. She said that hormonal status is probably underestimated in some cases, so in cases like mine (weakly positive) she tends to think I'm more positive than we think.  I asked her, then how do you know if someone is truly a triple negative, but she didn't really give me an answer for that.

    I'm curious if you know your percentages--does it fit with her theory????

  • Pure
    Pure Member Posts: 1,796
    edited April 2010

    My biopsy showed I was I pr negative but then when I had the masectomy and the tumour was actually looked at it was PR positive-so in this case the biopsy was wrong. I was 98% er positive so I can't imagine it gont any time to get any better.

    With that said, I know of 2 people who were told they were triple negative and had 2nd opiouns and they were really NOT. Scary!

  • KerryMac
    KerryMac Member Posts: 3,529
    edited April 2010

    Oh, this makes me so cross. There have been at least 2 scandals I can think of in Canada, where pathology was tested incorrectly. It happened most seriously in Newfoundland, where there were thousands of women affected, mostly being told they were ER- when they were actually ER+, and then not being given hormones. People die over this stuff.

    I don't know the implications of being triple positive as opposed to only HER2+, all I can think is it does give you more weapons to fight with (Hormones) which I imagine would be a good thing?? 

  • geewhiz
    geewhiz Member Posts: 1,439
    edited April 2010

    The ER was only 16% positive, and the PR was really high at 85% I think.

    It is crazy. I just finished chemo - I chose TCH because its showing to be a better choice sometimes for er/pr negatives than ACT. I would have gone with the adriamycin had I known I was hormone positive. We also weren't going to do tamoxifen.They did tell me that the her2+ was my biggest concern. I will keep my fingers crossed that the herceptin does its tricks. (That and my vegan life and exercise) 

    So lesson learned! Never stop questioning and taking charge of your care. 

  • kimber3006
    kimber3006 Member Posts: 586
    edited April 2010

    I agree with Kerry - pathology is not the place to be making mistakes - grrrr....  That's great that you will have new weapons in the arsenal (Tamoxifen and/or AI's), though!   I never really see anything about being PR+ or what else you may be able to use because of it?

  • lexislove
    lexislove Member Posts: 2,645
    edited April 2010

    OMG.

    It's crazy to think that a pathology report could have mistakes...or be wrong!

    I'm so...so..glad your now in the clear. Good news about more arsenal in your fight. This is a good thing.

    Welcome to the Triple+ club! Smile

  • lexislove
    lexislove Member Posts: 2,645
    edited April 2010

    I was told that if one is PR+, anti hormones are still perscribed. So, your treatment wouldn't change.

  • geewhiz
    geewhiz Member Posts: 1,439
    edited April 2010

    Thanks Lexislove and Kimber! 

    Since I had been considered both er/pr negative, it is scary to think that I might have missed out on the hormonals.For the past 6 months I have been skipping the threads about tamoxifen etc.

    Time to brush up!

    Lexislove...I hate to sound ignorant...but is lupron an AI of some sort?

  • LRM216
    LRM216 Member Posts: 2,115
    edited April 2010

    A biopsy on the surgical matter always trumps the teeny tiny shreds they pull on a core needle, etc., biopsy.  That is often a reason for a change in receptor status and isn't all that uncommon.

  • violet7
    violet7 Member Posts: 180
    edited April 2010

    geewhiz,  I had a similar thing happen to me.  The results from my biopsy came back vaguely hormone positive, and the pathology from my masectomy came back "cold negative", entirely negative.  The doctor wants me to decide whether I'd like to take hormone-blockers just in case.  He says that they would help if I do have the hormone receptors and wouldn't hurt really if I didn't.  I guess I'll take them regardless, even though I no longer have ovaries to produce estrogen since my radical hysterectomy in 2008.  The doctor thinks I'm in a subset of triple negative.  I'm confused.  I think my surgery was either a Thursday night or Friday night.

  • geewhiz
    geewhiz Member Posts: 1,439
    edited April 2010

    LRM..it turns out that the biposy was the correct diagnosis...NOT the mastectomy. The slides from the mastectomy were just pulled 7 months later and restained.

    Violet..I had 3 centers examine the results. I would definitely recommend another opinion. 

  • lexislove
    lexislove Member Posts: 2,645
    edited April 2010

    Geewizz,

    Lupron is a form of ovarian supression. Im pre menopausal and my onc wants my ovaries supressed to lessen the amount of estrogen floating around. Plus, Tamox.

    Hey...since your ER+ now..... time to ask for Zometa!

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