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Considering quitting Tam after two years

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Does anyone have a general idea of how much protection you get from completing two years, premenopausal? I've seen numbers that say you're better protected years down the line by completing 5-7 years, but I have Stage 4 of another kind of cancer, and will be very lucky to get six more years. I know it's a gamble because they're developing better treatments every couple of years, so maybe I could live 10 or 15 years. I'm living with a kind of low level depression on tamoxifen, my thinking is slow and confused, and I really hate the geriourinary issues. Was on an antidepressant for a very short time then developed a bunch of neuro issues (I don't think it was meds, I think it was missed dx of Guilliane Barre), so now neurologist says I can't go back on them or take stimulants because they could worsen symptoms again. Between Tam and the med I take for the other cancer, I am tired, forgetful, unmotivated, unable to organize tasks and thoughts. Looking for ideas, commiseration, or validation that this simple drug can subtly ruin your cognitive function.

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  • laughinggull
    laughinggull Member Posts: 512
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    Hi wave2stars,

    I was never on Tamoxifen (I was premenopausal at diagnosis but removed my ovaries and started an aromatase inhibitor or AI), so my experience is different from yours. But I wanted to say hi and commiserate. You have all my sympathy. I am sorry you are dealing with so much. Not fair.

    With the AI, I also had a bit of mental fog the first few months (part of that was probably chemo brain), but things stabilized down the road. Did you discuss this with the oncologist? He/she should be able to provide an educated guess of how much benefit you are getting from this treatment, and how much it is reducing your recurrence risk -the number depends on the features of your cancer, it is not the same for all breast cancer patients. There is also an alternative hormone treatment for pre-menopausal ladies: taking an AI along with some othrer treatment to supress your ovaries.

    Best of luck with everything

    LaughingGull

  • waves2stars
    waves2stars Member Posts: 108
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    Thanks, LaughingGull. The fatigue and insomnia have leveled out and is better when I exercise daily, but the mental stuff hasn't changed. I know it's a complex sludgey mix of lack of estrogen action, lack of dopamine, anemia, brain damage from surgery, and actually shutting off a small piece of my mind so I can try to live in the new normal. One breast oncologist told me I could stop taking tamoxifen if I wanted since I have the other cancer, but I argued I could live years with this and didn't want to have another stage 4 cancer, but now I feel tempted to quit. I have a follow up with a new breast oncologist next month and will ask about different hormonal treatment or even just trying a half dose. I really think, if they'd okay a three week drug holiday, I could take care of a lot of unfinished business that feels impossible with monkey brain.