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Tamoxifen after ALH diagnosis


Just joined the group.

Recently diagnosed with ALH (Atypical Lobular Hyperplasia).
Met with an oncologist and discussed about going on 5mg Tamoxifen for 5 years.
I am 52 and perimenopausal…had some heavy bleeding issues in the last few years and did a endometrial biopsy which came back negative.

I have to decide whether to go on Tamoxifen or not by my next appointment in a couple of weeks.

  1. With my bleeding history, concerned about uterine cancer if I go on Tamoxifen.
    Would like to hear from anyone that was in similar situation and went on Tamoxifen.
    My thought process as of now is … I can have a yearly detailed Mammogram to catch breast cancer early on but there is nothing in place for me to catch Uterine cancer. Am I putting myself at higher risk of uterine cancer by taking Tamoxifen?
  2. Anyone that was diagnosed with ALH and decided to not take Tamoxifen and how is it going?



  • moderators
    moderators Posts: 8,085

    Hi @sampige, welcome to our community. We're sorry you find yourself here facing this decision, we know it's not an easy one to make. But you've come to the right place for support!

    The hormonal therapy forum is a great place to get advice and guidance on the treatment your onc recommended. You may want to check out our High Risk forum for more information on ALH and how others have managed their risk with preventative measures.

    The Mods

  • salamandra
    salamandra Member Posts: 736

    A hormonal iud can reduce the risk of certain cancers. I love mine because it also suppresses my periods. My oncologist advised against it, but I pushed it. They are worried that it can increase the risk of recurrence of breast cancer, but at least for now that is more of a postulated risk than a demonstrated risk.

    I'd had some weird and irregular bleeding. My gynecologist had advised an endometrial biopsy for me. I had it done at the same time as the IUD was inserted. They then said that the biopsy had turned out inconclusive but even if something had been the matter, the intervention they would have advised would have been that same IUD.

    That said, I think that the risk benefit calculations are in favor of tamoxifen - it is a very well studied drug - and that few if any oncologists would recommend a hormonal IUD to someone with high breast cancer risk. It just makes such a big quality of life difference for me that - based on my understanding of the potential risks and benefits - the risk is worth it to me.