Triple Negative on Femara

Derbygirl
Derbygirl Member Posts: 198
edited March 2014 in Breast Cancer #1
I was told by two Oncologists and Breast Cancer Surgeon that I was triple negative with only 5% ER+ and totally PR negative and that I would not benefit from hormone treatment. Now six months later after lumpectomy, chemo and radiatin (nearly finished), Oncologist and Pathologist changed the treatment plan to include hormone treatment. It is felt that anyone with at least 1% receptor positive COULD benefit from hormone therapy. Seems like a lot of risk compared to the possible benefit, but I started on Femara today for five years. Wondering if anyone else has experience or an opinion in this area?

Comments

  • mimivac
    mimivac Member Posts: 2,143 Member
    #2
    Triple Negative
    I am interested in this, too, since I think I may be triple negative or nearly triple negative with a very weak ER +, like you. I believe my oncologist said that you could benefit from hormone therapy even if you are ER neutral, but don't quote me on that. My situation is frustrating since I was initially diagnosed as weakly ER positive with 15-20%. My surgeon was suspicious of this b/c of my age (34) and re-ran the tests. Then I came up 0% or negative. Has anyone else had this experience? Was the first test just wrong? Is it possible for some of the tumor to be positive and some to be negative? I really, really want to be positive!

    I would at least try the Femara. Maybe you will be one of those lucky ones with minimal side-effects and it will help you.
  • Joycelouise
    Joycelouise Member Posts: 482
    #3
    Iam 45% E+ and asked my onc.
    Iam 45% E+ and asked my onc. the same questions. We are told our cancers "eat" estrogen. Then how important is the level? If that part of the cell that uses estrogen is debilitated, does the whole cell die? Like it would if you took out something imparative, like the heart - no matter that it is a small part. My onc. said that tamoxifin still highly indicated in my case but didn't really explain. I will follow this post and may try going on line for some answers.
    Joyce
  • Derbygirl
    Derbygirl Member Posts: 198
    #4
    mimivac said:

    Triple Negative
    I am interested in this, too, since I think I may be triple negative or nearly triple negative with a very weak ER +, like you. I believe my oncologist said that you could benefit from hormone therapy even if you are ER neutral, but don't quote me on that. My situation is frustrating since I was initially diagnosed as weakly ER positive with 15-20%. My surgeon was suspicious of this b/c of my age (34) and re-ran the tests. Then I came up 0% or negative. Has anyone else had this experience? Was the first test just wrong? Is it possible for some of the tumor to be positive and some to be negative? I really, really want to be positive!

    I would at least try the Femara. Maybe you will be one of those lucky ones with minimal side-effects and it will help you.

    I would request a copy of
    I would request a copy of the pathology report(s) and ask for interpretation from your oncologist, who is the expert to manage your treatment from here on. Was that 0% negative for ER and PR? I was negative on one and 5% positive on the other.
  • mimivac
    mimivac Member Posts: 2,143 Member
    #5
    Derbygirl said:

    I would request a copy of
    I would request a copy of the pathology report(s) and ask for interpretation from your oncologist, who is the expert to manage your treatment from here on. Was that 0% negative for ER and PR? I was negative on one and 5% positive on the other.

    Triple Negative
    I was initially ER positive at 15-20%, but the second pathology report had me at ER negative (0%). She said that this kind of discrepancy happens more often that she'd like. :(

    I was PR negative both times.
  • Joycelouise
    Joycelouise Member Posts: 482
    #6
    mimivac said:

    Triple Negative
    I was initially ER positive at 15-20%, but the second pathology report had me at ER negative (0%). She said that this kind of discrepancy happens more often that she'd like. :(

    I was PR negative both times.

    NOt to stir the pot, but I
    NOt to stir the pot, but I would wonder how she knew which test was the accurate one? Joyce
  • mimivac
    mimivac Member Posts: 2,143 Member
    #7
    Joycelouise said:

    NOt to stir the pot, but I
    NOt to stir the pot, but I would wonder how she knew which test was the accurate one? Joyce

    Discrepency
    They are doing the test a third time, so I'll find out on Friday when I start my first round of chemo. I seem to be obsessing over this and feel that it is the the main element determining my prognosis, even though my surgeon said that being node negative was more important. Argh.

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