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Anxiety about coming off Tamoxifen

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megan_c
megan_c Member Posts: 5

Hello!

I haven’t posted in a while, but I have been on Tamoxifen for almost 5 years (May of 2024 will be 5 years) and my oncologist has talked about me coming off in May, and all of the sudden, the anxiety is real….. I feel like this drug has been like a security blanket for the last five years. I also understand that coming off means I’m still doing well, but the thought of seeing my oncologist yearly is also a really scary thought. I’ve also read a few horror stories about side effects of coming off and I’m freaking out there too! I was diagnosed with stage 2 er/pr+ her 2 negative when I was 31 years old, so I will be coming off Tamoxifen at 37. Can anyone share positive experiences?😁

Thanks!
Megan

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  • moderators
    moderators Posts: 8,286
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    Hi @megan_c,

    We just wanted to pop in and give you a virtual hug! We can certainly understand the anxiety of coming off a medication that's meant to reduce your recurrence risk. We're sure others will be by shortly to weigh in with their experiences soon!

    —The Mods

  • prahan
    prahan Member Posts: 58
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    Hello Megan,

    We both are sailing in the same boat.

    Myself coming off Tamoxifen by May 2024. Myself too anxious. Keep posting. was diagnosed with stage 1 , er/pr + her2 negative.

  • sue380
    sue380 Member Posts: 10
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    Hi

    New here I just finished radiation for dcis er/pr positive her2 -.. Am post menopausal. Have to start tamoxifen 5mg. Not looking forward to this. Fibro, osteopenia with a spine fracture , heart issues, it sounds bad but I live a active lifestyle. Wondering any postmenopausal women on tamoxifen

  • moderators
    moderators Posts: 8,286
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    Welcome, @sue380! We're so sorry you find yourself here, but we're glad you've joined our community and hope this can be a source of support for you.

    You may want to read through and post in one of our Tamoxifen threads in the Hormonal Therapy forum, lots of great info there and members who would be happy to offer their insights and guidance on their own experiences: https://community.breastcancer.org/en/categories/hormonal-therapy---before-during-and-after

    The Mods