Anyone taking Tamoxifen or AI's after 10ys?

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Anonymous
Anonymous Member Posts: 1,376
edited February 2020 in Hormonal Therapy - Before, During, and After
Anyone taking Tamoxifen or AI's after 10ys?
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  • kerrie389
    kerrie389 Member Posts: 66
    edited October 2019

    Hi all.

    Coming up to my 10th year anniversary since commencement of treatment and 9 years of taking tamoxifen or femara at different times with 1 year to go on the medication.

    Saw my oncologist the other day and she said that she will cease my tamoxifen in 12 months as there is no evidence to suggest a benefit from continuing after this point.

    I handle the tamoxifen very well now with very few side effects and quite frankly am terrified of coming off it.

    I thought I did see discussions of trials for 15 years on the medication or being able to continue on the AI's for a longer period.

    Is anyone doing this or have information regarding this. Would love to hear your feedback.

    Kerrie

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  • kerrie389
    kerrie389 Member Posts: 66
    edited October 2019

    bump

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  • kerrie389
    kerrie389 Member Posts: 66
    edited December 2019

    bump


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  • DorothyB
    DorothyB Member Posts: 305
    edited December 2019

    Sorry - no information on this. I'm just starting my journey. I'm glad that you have had almost 10 years w/ no recurrence!

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  • pupmom
    pupmom Member Posts: 5,068
    edited December 2019

    I've taken Als and Tam for 8 years (2 more to go, yay). I've had some SEs, but none really serious. I was 100% ER+ and, I think, 95% PR+. Hope this helps!

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  • Lucy55
    Lucy55 Member Posts: 3,044
    edited December 2019

    Interesting question ..I hope someone replies can answer it for you .

    I'm only 5 years out ..but I hope that by the time I get to 10 years they have extended the time too. It's like they don't know if it's beneficial to take it longer than 10 years ..but they don't know it's not either !!

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  • trinigirl50
    trinigirl50 Member Posts: 343
    edited January 2020

    Hi Kerrie

    Thus far there have been no studies that show benefit of taking past 10 years. Your tumour was small and you had 2 nodes, so I am guessing that the overall benefit for you would be small. The studies have shown that the more nodes involved, the greater the increased benefit. Google benefits of taking AI or Tamox for 10 years, and check out the latest articles (2019). There is also a podcast on breastcancer.org on this topic.

    Me personally, I would take it for 20 years if my bones hold up (I am on an AI) but I had a lot of node involvement and large tumour. If I were you (and I am not, so I am not suggesting you do this, just giving my personal opinion), I would stop taking it.


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  • kerrie389
    kerrie389 Member Posts: 66
    edited January 2020

    Thanks Trinigirl for the info.

    Just read the info from the google search and yes it seems there is no benefit in extending the treatment beyond 10years at this stage. I am scared to stop it and then a few years down the track they change things again and say there are benefits for extended use.

    I will have a listen to the podcast. My oncologist has told me this same information but as the time fast approaches I am reading all the information I can

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  • Falconer
    Falconer Member Posts: 1,192
    edited January 2020

    Is the Breast Cancer Index Test available to you now that you’ve completed ten years? It may be too late

    https://www.breastcancer.org/symptoms/testing/types/breast-cancer-index-test

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  • Sue2020
    Sue2020 Member Posts: 1
    edited February 2020

    Hi, Kerrie,

    I have the exact situation as you does. and would like to know if I can take tamoxifen longer than 10 years.

    I am looking for a discussions of trials for 15 years on the medication. Do you know further information? Looking forward to hearing from you!

    Sue

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  • Moderators
    Moderators Member Posts: 25,912
    edited February 2020

    Dera Sue2020,

    Welcome to the BCO community. We are glad that you reached out with your question and hope you can find some helpful information here on the boards along with support from others who share similar stories. You can always send a private message to members to whom you are trying to communicate. Let us know if we can be a help to you as you navigate your way around.

    The Mods

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  • Artista928
    Artista928 Member Posts: 2,753
    edited February 2020

    I don't know the answer but my onc once said I may be a lifer on T since I don't toletate AIs.

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