Forum Discussion

byefelicia's avatar
byefelicia
Member
1 year ago

Stopping hormone blockers

Hi

I was diagnosed with BC at the age of 40 in 2022 and have had surgery, chemo, radiotherapy and have been in remission since May 2023.

I went on hormone blockers straight after my active treatments finished. and was on them approx 8 months.

I tried 3 types of hormone blockers - Letrozole, exemestane, and Tamoxifen.

The adverse side effects were too much for me, and I chose to stop the tablets, chosing my quality of life over the possible the risk of recurrence.

I also had one zoledronic acid injection (as I was forced into menopause, having my ovaries removed), but have recently been informed that there is no benefit for me to continue the injections as I am no longer taking tamoxifen, and have not been on tamoxifen for over 6 months. 

I made the choice at the time which was best for me. At first it was to take a break, and maybe return to taking my meds which did not eventuate as I felt so much better not on them.

I did not realise or maybe did not listen that the break could/would compromise the benefit of taking the meds, and that I couldn't just pick them up in the future.

I have some regret, but now feel like I have to live with the decision I made, which at the time was made when my life quality was not good, nor was my head space.

I was also told that without taking any treatment, I no longer need to see my oncologist is that right?

I guess I just wanted to share my story and see if anyone else could share if they decided not to continue with hormone blockers within the first year after active treatment. 

Take care everyone 🩷

2 Replies

  • kittykatster's avatar
    kittykatster
    Member
    10 days ago

    Hi Carolyn. Hope this reply isn't too late but I am currently on Tamoxifine post radiation and surgery. I had DCIS so not the full blown C but need to take it for three years as was Estrogen +ve so needs to be suppressed so nothing grows back. `I was very gutted as had been going through peri menopause for 2 years sorted out the symptoms and was on HRT but had to stop it immediately. I would say give it a go and if it doesn't work or things need to be reviewed then your medical oncologist will be able to help and advise and change it up. I went to my med O recently as felt the Tamoxifine was causing me to have night sweats and insomnia and she gave me something to help that as well as taking the Tamoxifine. It's well known to possible trigger peri but I have been advised it's best to take it to keep everything at bay. I would say it's worth the risk to do it and see and then make decisions on how you then feel. 

  • Carolyn2's avatar
    Carolyn2
    Member
    20 days ago

    sorry I know it is a old post. 

    I trying to decide to take hormone blockers I'm 44 years old. Have done surgery, chemo, radiation. Then meant to have hormone blockers and ovary injections until I have them removed. Ive heard so many stories about the side efforts. I don't want to have to suffer from them. Im going to ask my oncologist what % of recurrence will be on hormone blockers . I have a very active life and I want to live it to the fullest what ever I have left. I was in a DV marriage. I just got my life back then 6 years later I get bc seriously. 

    What was your bc?

    Hope you don't mind me writing to you.