Five or ten years on Tamoxifen?

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Snow441
Snow441 Member Posts: 4
edited April 2019 in Hormonal Therapy - Before, During, and After

Hello everyone :) Not sure I'm posting this in the right area or not-if not I apologize. For those that have taken Tamoxifen, I was just wondering how long each of you have taken it for? I have heard of individuals taking it for five years, and those that have taken it for ten. My mom is currently taking it. The last appointment she had with her oncologist, her oncologist discussed being taken off of it at her next appointment, as it has been five years. That next appointment is in a few days. She isn't sure if she should keep taking it for five more years or if it would be ok to quit taking it now. Thank you for any and all input, it is much appreciated!!

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  • redlessi
    redlessi Member Posts: 27
    edited March 2019

    Hi, I saw my med onc Dr. Today and Im at the bitter sweet completion of tamoxifen after 5 years. The recommendation was to stop taking the tamoxifen for at least 6 months and consider starting Arimidex for the next 5 years. I am so excited about no having to take tamoxifen but feel some anxiety about not having something still fighting to prevent re-occurrence. I know there are no guarantees even with taking the hormone therapy medication but it did give me some sort of protection at least in my mind. So I now have to decide if I want to start this new medication and possibly have to deal with all the new side effects.

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  • Snow441
    Snow441 Member Posts: 4
    edited March 2019

    redlessi, congrats on finishing Tamoxifen! My oncologist has not recommended anything else other than vitamin d-2000 iu’s a day. I guess alot of people that have breast cancer are low on vitamin d. It is supposed to protect against it, as well as other things. I just don’t like taking it because it makes me so hot. If I were to continue anything it would probably be the Tamoxifen.

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

    I have been told I will get 10 years of tamoxifen, because I have a family member that went metastatic at the 17 year mark. Makes sense.

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  • lala1
    lala1 Member Posts: 1,147
    edited March 2019

    Ask for the BCI test if you qualify. I'm 6 years out and stopped Tamoxifen last Feb at 5 years. I was planning on taking it for 10 but the test showed no benefit for continuing. I was pretty freaked out (especially because I also came back high risk for recurrence albeit on the very lowest end of high risk) to not be taking something but my MO explained that at best with the margin of error I MIGHT get a 1% reduction in recurrence by continuing. He said if I exercise most days I would get about a 30% reduction and if I dropped 10 pounds I'd probably get another 30% reduction!! So that's what I'm doing...I go to the gym most days and do a yoga or weights or cardio...sometimes 2 of those and I'm down about 7 pounds and still going. I will say it took me almost a year before I started feeling like I did before Tamoxifen. I've been doing the gym through the whole 5 years and actually gained weight (thank you stupid Tamoxifen) but suddenly I'm losing. And my joint pain just recently started to recede. And I finally don't feel like I NEED to be on Tamoxifen.

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  • edwards750
    edwards750 Member Posts: 3,761
    edited March 2019

    I was ambivalent about continuing on with Tamoxifen after 5 years because I thought of it as another insurance policy too but my MO said I didn’t need to keep taking it because there are side effects like clots that could develop from continuing to take the medicine. I don’t miss the joint pain that came with the drug.

    I was DX with early stage BC 7 years ago last August. So far, so good.

    Diane

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  • G8dds
    G8dds Member Posts: 1
    edited March 2019

    Ive been on tamoxifen since April 2012, so 7 years, they've tested my hormone levels for the last 2 years to swap to arimadex but clearly my body is fighting the menopause, go figure!! Im now 45 years old and last Friday was told to immediately stop tamoxifen as I've been told I now have ovarian cysts!! Now waiting for the gyne appt. Anybody else had this?

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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2019

    Hi there, G8dds, welcome to BCO! Your situation certainly sounds unique, we'd be curious to know if anyone else has experienced the same. We hope you get some answers when you're able to get into your doc's office, please keep us posted!

    The Mods

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  • Snow441
    Snow441 Member Posts: 4
    edited March 2019

    lala1, I will ask for the BCI test. I noticed beneath your post it says you had prophylactic ovary removal. Did your oncologist recommend that? My obgyn keeps recommending that I should have that done, but every time I ask him why he does not give me a direct answer. Told my oncologist about it, and she cannot understand either why he recommends it.

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  • smilinkar
    smilinkar Member Posts: 31
    edited April 2019

    lala1 I just took the BCI test too and was told I could go off tamoxifen. I was so excited because I hate that sh*t. But then I got nervous. Does this mean it has never worked?? I asked my MO who is also my employer but my head was spinning and I don’t remember what she said. I’m going to go off it for sure after I finish this bottle but I just can’t stop wondering if it did nothing the whole 5 years. I’ll probably have to to make an appointment with her versus just passing in the hall

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