Tamoxifen for technically triple neg??

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workmother
workmother Member Posts: 78

My onc. has me a bit confused. I was told I'm technically triple negative. My original biopsy came back 50% ER+ and 3% PR+. The pathology on my lumpectomy came back ER and PR negative. The original biopsy and the lumpectomy were both retested - with same results. Had oncotype test done too because of the original biopsy. That came back as "weakly" positive - not enough to be considered truly positive.

I have finished chemo (Yay!!!) and am starting rads next week. Onc. wants to discuss me going on tamoxifen. He says the new standard that is coming out from the American cancer society is that anyone who is at least 1% ER+ should be on Tamoxifen. Anyone else on the triple neg boards who is a little ER+?

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  • stephanief
    stephanief Member Posts: 200
    edited October 2010

    I am 2% er+ and will be starting tamoxifin when I finish chemo. My onc figured it was worth a try. Hope it works for us!

    Steph

  • TifJ
    TifJ Member Posts: 1,568
    edited October 2010

    Interesting. I will be seeing onc. for first time on the 18th. I am 3% +. I wonder what he will suggest regarding the Tamoxifin?

    Best of luck to you both!

    Tiffany

  • Chirps
    Chirps Member Posts: 91
    edited October 2010

    Short version: I am barely ER+ (<1%) and no Tamox for me.</p>

    Long version:

    I don't know if "retesting" means making new slides or re-reading the ones already done, and I don't know what tests were used (IHC?) to show "how much +" for your HRs. And maybe none of that matters, so long as there's no "mistake." Biopsy is "smaller tissue" sample (does not represent the whole tumor so well) so I think it makes sense to put less weight on those numbers. Since for you & for me, the oncotype seemed to confirm the post-surgery path, this seems most credible, I would think.

    I had a fascinating meeting with my pathologist; learned a lot. Saw on my slides that my "small amount of DCIS" in the tumor (IDC) was actually ER+, but that's beside the main point. I had insufficient biopsy tissue to get receptors numbers, so all I got was post-surgery and Oncotype. The post-surgery was Allred Score 2 (less than 1% of cells in tumor were weakly positive ER) and the path report said this is "Positive." In the past, this has been called "Negative." (Oncotype called it "Negative" b/c of too-low number.) Pathologist told me this (calling it positive) is a new guideline, surmising that it was like this because oncodocs may wish to prescribe anti-hormone drugs in these cases. She said if there is One Cell in the tumor that's positive, it must be called Positive! There is, indeed, info out there about the possible usefulness of anti-hormone drugs in cases where HR status is not "highly positive" but the big Q is "where should one draw the line?" I'm not a Dr, so I don't know. (Do Drs know?) I haven't read research that suggests that 1% is "enough" and in fact, all studies I saw lump the "1%" in with the "negative."

    My oncodoc says the anti-hormone drugs won't do me any good. He would surely recommend them if they did, since the Tamox would probably also "help" my bad bones. For me, he said "chemo or nothing."

    (To confound this, in my mind, it seems that cancers can morph to "more" and "less" receptive, but I don't know anything about this...)

    If only a tiny fraction of the cancer cells will respond to this drug therapy, where's the logic in taking the drug to fight the cancer? Or is this simply another case of "we don't understand why it works, but it seems to help"? I don't know. But, both my oncodoc (and pathologist, fwiw) seem to think that it doesn't make sense, in my case, to do the Tamox. Don't know where they would draw the line, though.

    You are young and in these cases it seems more common to use every possible tool. I would weigh the side effects of the Tamox, some of which are said to be different for pre- and post-meno (at least those relating to bones). Be mindful in this choice, taking your personal circumstances into consideration... Though it's "targeted" therapy, it still has possible negative side effects.

    I hate it when the answers aren't clear-cut. Best wishes and good luck --- to all of you!

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