Anyone taking Tamoxifen or AI's after 10ys?

Anonymous

Anyone taking Tamoxifen or AI's after 10ys?

kerrie389

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

kerrie389

bump

kerrie389

bump

DorothyB

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

pupmom

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!

Lucy55

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 !!

trinigirl50

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.

kerrie389

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

Falconer

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

Sue2020

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

Moderators

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

Artista928

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