Anyone who has finished their 5-10 years of hormone blockers post-breast cancer - a question

[HighburyLass]

I am nearing the end of my treatment. Originally was on Letrazole but the S/E were so awful I was switched to Exemestane. While the S/E were reduced I can’t say that it’s been a walk in the park. The worst being aching/stiff joints and a feeing of being less agile/older. And a definite mood dip. Feeling like I have a lot of PMT which I rarely had when I had periods.

So, now I’m heading towards coming off them, I’m wondering how I might feel. I know everyone is different but just wondering. Online I can only find stuff from people who came off the drug early due to intolerable side effects. So anyone who lasted the course, how did you feel once you came off the drugs.

TIA

I was on Tamoxifen, was then switched to Letrozole but had to switch back to Tamoxifen due to the awful s/e of Ltrozole. Did 10 years in all and now feel great but to be fair I didn’t really have any s/e on Tamoxifen. Having said that I do now have an overactive bladder and have now read that could be due to the Tamoxifen. Did the 10 years in all course. Did have some achy joints but weekly reformer Pilates seems to have sorted that out. Finished the Tamoxifen 2 years ago.

Was on Tamoxifen the whole time hardly any symptoms only virginal astrophy from year 8 and used vagifem which worked and was fine to use as it was localised. Nothing when stopping.

I was on Tamoxifen and also didn’t really have any side effects. It was weird to come to the end of the treatment though (ten years).

Thanks for sharing your experiences. I’m really hoping the low mood dips and the stiffness may go. I exercise outside which helps on both counts but still wonder how not being in the drug may make me feel

I was on tamoxifen for years. Then later on arimidex for years. Both have me (minor enough) side effects. Totally back to normal each time after stopping each drug.

How are you now OP?
I came off ten years of tamoxifen and letrazole a month ago and felt VERY wierd. Emotional and brain not engaged. It’s getting better now- but it’s just odd to have survived. I met too many people who died.
The whole thing is immense. Sorry just a bit weirded out. Does anyone else feel like this?

Yes. It was quite a weird feeling to finally come off the treatment. The end of a long road. I guess there’s an element of survivors guilt, plus reflections and ‘what ifs’. Definitely messes with your brain, but well done and congratulations.

Thanks for your experience and sorry it was still quite weird.
Im actually not coming off them til late summer - it’s now 5 years since diagnosis and hospital treatment started but didn’t start on aromatase inhibitors til radiotherapy finished. So a few more months to go