stopping Tamoxifen after 3 years

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Isabel390
Isabel390 Member Posts: 1
edited April 2019 in Hormonal Therapy - Before, During, and After

Short introduction:

I am ER+, PR-, HER2+

First BC occurred in March 2015. I had a lumpectomy and denied standard care and wanted to try it "my way" meaning eating healthy, exercise and taking supplements. A year later is was back and I underwent chemo, radiation and am now on Tamoxifen for 3 years. I am in a mental fog, can't concentrate, am too worn out to exercise and gained 15 lbs.

Now I am at the point where I am debating with myself to stop the Tamoxifen, just to be able to move and be more active. I strongly believe that my state of mind about my health is crucial for my recovery and doubt more and more that staying on Tamoxifen and worrying about other possible cancers can be helpful.

I am trying to find current data about cancer recurrence for BC like mine. Does anybody have that? I have my 6 month follow up appointment with my oncologist tomorrow and will discuss that with her. Just wished I had more info before going in.

Thanks for reading.

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  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,689
    edited April 2019

    What was your diagnosis the first and second time? What was your oncotype? I would definitely do the 2 more years and then test to see the further benefit of 10 years. Also depends on age if <65 at least 5 years, over 65 and up to 75 5 years, older than that discuss with MO. That is my educated opinion

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  • gb2115
    gb2115 Member Posts: 1,894
    edited April 2019

    See if they are willing to discuss the other meds besides tamoxifen. You already had one recurrence so going completely without anything seems unusually risky. I think that data might be harder to find (ie how many got a third cancer after partial tamoxifen) because most of it probably focuses on the first recurrence, but maybe your oncologist knows.

    It's tough. I hate tamoxifen too, and have 8 years to go. It really sucks.

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

    Some things to consider are:

    • trying different brands of tamoxifen. That's what I'm doing now. Some women find that a different brand will have much fewer side effects for them
    • trying to split your tamoxifen dose, 10mg morning and 10mg night. That eases side effects for some women. You can get 10mg pills for that.
    • lowering your tamoxifen dose. That's not standard of care because there isn't research validating the efficacy of a lower dose. But if it's between that and nothing, there is at least some reason to believe that some is better than none. I went down to a lower dose for about a week and a half because of some important work deadlines, and it's made a huge difference.
    • trying an aromatase inhibitor (plus ovarian suppression if you are premenopausal). While for most women they have worse side effect profiles than tamoxifen, that may or may not be true for you, and there's a couple different ones you can try. Plus they have been shown to be more effective than tamoxifen for preventing recurrence for PR- cancers.


    Here's a calculator where you can put in your cancer details and get your statistical outcomes with different treatments.


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