Anyone with Triple Negative being offered hormones?

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KELL414240
KELL414240 Member Posts: 69

I received an endometrial biopsy report which shows benign but there is hyperplasia simple without atypica which is great news!! But, GYN gave me three options, take progesterone, get an IUD with progestin, or a complete hysterectomy which she says is way overkill. Even though I am triple negative, I was told by my first oncologist(who passed away due to a drunk driver which is why I don't see him anymore) to not take any hormones ever. Even when I was doing chemo, and it through me into to menopause something terrible, he would only give Effexor to try to help. My regular doctor said no hormones either. So I'm concerned about taking any hormones as I don't want to wake a sleeping giant in my body. I have a call in for my current oncologist to get her thoughts. I also have a friend who's brother is a GYN in another state and she is going to ask his opinion. Anybody else have any experience with this?

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  • MountainMia
    MountainMia Member Posts: 1,307
    edited May 2019

    I think your best information will come from your own oncologist. Good luck with getting a good solution. (Mostly I'm answering to try to get more eyes on this, because there is no information or advice I can offer.)

  • KELL414240
    KELL414240 Member Posts: 69
    edited May 2019
  • chi-girl
    chi-girl Member Posts: 21
    edited May 2019

    I do. I had some cognitive loss due to chemo and/or the menopause it threw me into. My Ob/Gyn said that hormones would likely help. I talked to my oncologist about it and he was reluctant, but said it was probably okay for a couple of years as long as estrogen and progesterine were both taken. I started taking them and they did help. But I was so darn nervous about doing it that I quit after a few months. Everyone did say that if my BC was hormone + it would have been out of the question. But because I was triple negative, they said it was something to consider.

    I did also take both once for a couple of weeks to reduce the lining of my uterus to help reduce the chance of uterine cancer (my mom had that.)

    It's worth a conversation with your oncologist.


  • KELL414240
    KELL414240 Member Posts: 69
    edited May 2019

    Hi Chi-girl,

    That's interesting. She only wants me to take progestin and I'm reading a lot of crazy stuff on Dr. Google. I'm going tomorrow and am very curious about what oncologist has to say about it. I really don't want to have the surgery but I don't want to wake the sleeping giant either. I think I would cry if I had to do chemo again. I'll let you know tomorrow what she says.

  • Salamandra
    Salamandra Member Posts: 1,444
    edited May 2019

    The role of progesterone in breast cancer is not as well understood as the role of estrogen. The conservative position (and the one advised by my oncologist) is to avoid it.

    I was on a hormonal IUD for a few years, then came off to do egg freezing (which involves lots of hormones), then went to get back on it a bit later. It was at my appointment for my new IUD that the gyn found my lump - and pretty soon everyone is telling me to take the IUD out.

    Nope. Even with my HR+ tumor. My oncologist said that the recommendation to remove it was based on the general principle of avoiding exogenous hormones rather than on specific studies of the impact of progesterone, whether by IUD or otherwise. There was only one study that I could find that reported on the IUD specifically, and while it showed a tiny increase in risk of incurrence, the decrease in risk of ovarian cancer was twice as large (still tiny). So I'm keeping it in, against medical advice. It's for my quality of life. It's literally the only thing I have colored outside the lines for.

    I agree that you need to take this question to your oncologist, and they need to understand the gynecological implications. My oncologist consulted with an oncology gynecologist before she came back to me, and said that there was no contraindication with tamoxifen and the gynecologist oncologist had other breast cancer patients on the hormonal IUD who were doing fine.

  • KELL414240
    KELL414240 Member Posts: 69
    edited May 2019

    Hi Salamandra,

    Thanks for your response. I am 53 now and am in full menopause. Nothing is working anymore. Ha ha!! We'll see what she says tomorrow:)

  • KELL414240
    KELL414240 Member Posts: 69
    edited May 2019

    Hi All,

    Met with oncologist. No provera or mirena hormonal treatment. She wants to do complete hysterectomy or ovary removal. I'm on the fence as I don't want to follow up with ultrasounds and biopsies. I don't need the uterus or ovaries anymore so I have another appt with gynecologist to discuss these. I am appointment'd out!!

    Hugs to you all!!

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