Finished my 5 years on Tamoxifen! What to expect now?

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katharu
katharu Member Posts: 3
edited August 2018 in Hormonal Therapy - Before, During, and After

Sorry if there's a topic about this somewhere -- I couldn't find one.

My oncologist surprised me and said he was fine with my quitting Tamoxifen immediately now that I've completed 5 years. It was such a great feeling! I'm hopeful that some things will go back to the way they were or maybe they won't be as bad. I gained weight, got a floppy fat stomach, quit having periods, and have major hot flashes all the time. I'm 54 and as of last year my blood tests indicated I was no where near menopause. So I'm just cautious about what lies ahead. Fingers crossed that the periods stay away, but I'm hopeful for positive changes.

Does anyone have similar experiences to share after Tamoxifen?

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  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,689
    edited July 2018

    Congratulations!!!! That is so awesome. I am sure that you are relieved. I have been on Tamoxifen for about 1.6 years, and will be on it for some time to come. If you are not exercising, you should look for Claire_in_Seattle on here, she is on my Uplifting and Lively Messages thread and is amazing. She finished her AI and is having a blast. Good luck on your journey!

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  • coraleliz
    coraleliz Member Posts: 1,523
    edited July 2018

    I stopped Tamox at 5 years. Some things got better(dizzziness, stress incontinence, irritability). Somethings remained the same(aches & pains, foggy head at times, goofy vision). I've been off it for 2 years, so I think it's best I forget & move on. I had regular periods at 52, when I got BC. I had a handful of periods while on tamoxifen. My biggest problem was the uterine polyps I kept growing on that drug. It was suggested that I switch to an AI at one point, but my doctors would do the lab work to confirm I was menopausal & I just got so tired of fighting for things. I was also pretty sure I wouldn't like the AI side effects any better. What a relief to be done with this treatment! Congrats!!

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  • IsabelArcher
    IsabelArcher Member Posts: 297
    edited August 2018

    Hi Katharu-- I just stopped Tamoxifen last week. Was on it for 4 1/3 years. My oncologist decided to take me off early because I'm only very weakly ER+ anyway (my tumor was HER2+). She said 5 years isn't a magic number, and if I'm getting any benefits from it at all, another few months won't make a difference. I had started to have gyn SEs--lots of vag discharge, some of it very lightly brownish. An ultrasound at my gyn's office suggested slight uterine thickening and probably polyp(s). Onc said given these SEs, it's just not worth it to continue on Tamox. My BIGGEST issue with Tamox (the hot flashes stopped after about 2 years, didn't have other SEs) is the 15 pounds I gained while on it without eating a speck more or eating any differently than I was eating before while happily thin. (I have an excellent high-protein, low carb diet and exercise regularly.) My onc insists the weight gain was due to menopause, not Tamox, but I have never quite believed it. I will see what happens over the next year...

    Coraleliz, my onc had me try switching to an AI briefly (I was well past menopause), and it was a disaster--I had so much joint pain she took me right off it after about 2 months and I went back to Tamox. Again, my tumor was only weakly ER+, so the AI SEs were NOT worth it.

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  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited August 2018
    I am curious if any of your drs. suggested the BCI test to see if you would benefit from extended therapy. Even though I had a low Oncotype, my BCI came back high risk so I will continue past 5 years. I am not sure how many drs. use this test or if it has been validated.
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  • IsabelArcher
    IsabelArcher Member Posts: 297
    edited August 2018

    Peregrinela, I don't know anything about the BCI test but oncotype tests aren't used for my kind of BC (HER2+). So this just doesn't apply to me. I hope you get answers from other ladies.

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