Hi MM I think we have chatted over the years? Here we are finally reaching the 5 year mark. I've just had my 5 year check up, it was strange that I felt really nervous about what my consultant would say. At my 4 year check up she had said it was up to me if I take tamoxifen for 5 or 10 years. What the hell do I know?? You spend years waiting to come off it but when the time comes it scared me to think I wasn't giving myself the best chance I could. Anyway at my 5 year check up, they just said we recommend you take it another 5 years and I felt relieved...so strange I know! I always write down all my questions to take with me so I don't forget what I want to ask. I showed my concern at this being the last check up, my consultant reassured me that if I did have a reoccurance my body would show me, this did help me as my bc didn't show on a mammogram yet I had 3 tumours. I know its difficult, but try not to worry and ask all the questions you have going round in your head.
Hope this helps and please let me know how your appointment goes..xx
Just also wanted to say how good It is to hear about someone being on hormone therapy for 5 years and is worrying that the treatment will be stopped. Thanks for your positive story - even if you did not mean it to be! I take it you manage any side effects well.
I would think discussions and decisions of extended hormone therapy are in line with the people's risk profiles regarding their initial diagnosis. However if hormone treatment risks were outweighing perceived benefits then I think that would be a good reason to have a break or discontinue treatment. I also think the evidence for 10 year use is more available for tamoxifen or tamoxifen plus AI than AI use alone. However you only have to see the number of posts on this sight where people have said they have been advised to take AIs for up to 10 years etc. I was initially advised 10 years and then another Onco said 5 years as no clear evidence for the benefit longer!! Well I don't know about that as there does seem to be some evidence. If I make 5 years, then I can have the debate nearer the time!!
If it was me then I would be thinking it is my final regular hospital check so it could feel like having a safety net taken away along with worrying about whether they may also try and remove another piece of protection like the medication. It's funny isn't it, we may worry about forthcoming appointments/scans/meds and then we may worry about not having them.
I hope some other folks come along who have had their final follow up appointments so you can have a better insight. I have only just had my third appointment. Believe me, the only reason my hormone treatment was mentioned last time was because I brought it up. It has never been mentioned by medics in any of my annual follow up appointments with the breast clinic. Maybe you want to consider grabbing the bull by the horns for your appointment and to write down any queries etc you have before you go.
All the best to you again,
Thanks Chick1 for your reply.
I think I just need to try and stop worrying about it and wait and see what happens at the appointment.
I think because this is my final hospital check I've built it up into something bigger than what it probably is.
Yes, I was told when I switched from Tamoxifen to Anastrazol that I would stay on it for the remainder of the 10 year period so hopefully that hasn't changed.
Thanks for replying to me!
Hello Mystery Mouse,
I can't advise you about 5 year appointments or your individual hormone treatment time. I just did not want to bypass your post without wishing you well for your appointment and generally.
Hopefully you can put your worries to one side and see what is said at your appointment. I think the Nice guidance advises practitioners to recommend or consider (depending upon a person's risk profile), extended hormone treatment of over 5 years with an aromatase inhibitor like Anastrazole even after 2 years on tamox so don't know if that may allay your fears. If they originally said treatment for at least 10 years, has something happened to make you doubt that that will be the case?
Best wishes to you,
Well I will be having my final check up soon, 5 years on from being diagnosed (where has the time gone)? Just wondered what to expect from the appointment.
When I switched to Anastrazole after being on Tamoxifen for 2 years I was told I'd take it for the remainder of the 10 year term. I really hope this has not changed as if it has I would rather not have switched but have just stayed on Tamoxifen for 10 years.
Anyone who has had their final appointment and been in a similar position and could offer any insight as getting quite anxious about it.