I've just had my 5 year oncology phone consultation and have come on here wanting to see other people’s experiences because like you I’m in turmoil. I was told at my 4 year appointment I would continue for another 5 years on Zoladex and Letrozole (10 years in total). Today I am told I only need 5 years of it and according to research there are no extra benefits to continue. Like you I had a blood clot during treatment. I am 52 and had no signs of going through the menopause prior to starting hormone treatments. I am worried if I come off, my ovaries could start up again.
Since the very start of my cancer treatment I have received contradictory advice, never seen the same oncologist twice and to be honest just don’t trust the advice. After one oncologist experience, I had to take my concerns to the complaints procedure and was basically given an apology by the director of oncology.
What was the outcome of your experience and can you offer any advice. I just don’t know where to turn 😢
I am also due my 5 year check up next week and totally confused!! I'm on tamoxifen and at last year's appointment I asked about how long I would be taking it for. I think was at a time , it was in the news that it had now been advised to be on it for 10 years. Basically my consultant said it was up to me, what the hell do I know what to do?? I feel nervous not taking it anymore and also worried about withdrawal symptoms that I have read on other posts. On top of this I had a bone scan in May, still waiting for the results, but on the back of that been called for an MRI and blood test which is freaking me out. My guess is i will get the results at my appointment.
With tamoxifen, there are risks either way and I guess that's why they say it is my decision.
Sorry I can't answer your post, but just wanted to let you know, you're not your own when trying to work these things out. If you work out the answer let me know. Xx
Sorry nobody has replied - I've had no response in the past to my questions and it hurts!
I don't know enough to inform you but I can totally understand the panic you must be feeling - I would ask to see your oncologist again to discuss your concerns.
Hope somebody with more knowledge on here can help you xxx
Hi, I’ve not been on the forum for a long time but having a bit of a wobble so trying to get others views/advice. I went for my 5 year check last week – the appointment was with the BCN. As it was my last appointment I had a wee list of things to ask with me. Told her about my sore left hip that has been bothering me for some months. I’d had an xray the week before so she got the results up and said they showed no signs of mets but she would have a word with the team to see if they wanted any more scans done and get back to me. I asked when I should stop having Zoladex, she said good job you mentioned that, I’ll check with the team about that too! So anyway I got a call from her today to say I’ve to go for a bone scan on Tuesday which is good. She also said I’ve to stop my zoladex as of now and also I have to stop letrozole from December (this being 5 years on it). I was gobsmacked re the letrozole. I said to her is current research not saying 10 years? She said because I’ve been on zoladex and letrozole for 5 years I don’t have to go on to 10 years, that would’ve only been if I had been on tamoxifen for 5 years, then they would put me onto letrozole for a further 5 years!! Has anyone else heard of this? I said I was told last year that I would be on letrozole for 10 years and she said that was the surgeon who told you that but it’s the oncologist she’s spoken with today and she has advised this is in fact based on new research and the surgeon wouldn't have known about this?! Needless to say I am practically having a meltdown, I feel I’m losing my 4 safety nets all in one fell swoop (yearly appoints, mammograms, zoladex and then letrozole). So basically I’m on my own ☹ and it’s scary. Also what if I haven’t gone through the menopause and my ovaries start up again after I stop having zolodex?
I am on the Mammo50 trial so I do have catch ups at hospital once a year for next 5 years and mammograms two yearly for next few years, but it’s not the same. I will be interested to hear how everyone’s 5 year appointments go. Did anyone else start straight off on letrozole? I had tamoxifen for about a month at the start and then had a blood clot so that’s why I was put on letrozole with zoladex. Does anyone know anything of this “new” research?