No consultation re stopping Letrozole at 5 years

Sorry you have had to deal with this. Like others have said I would contact your own breast care nurse ( you shave open access to them in case you find anyth8ng that needs investigating) and ask for at least a telephone consultation with a consultant to discuss this. If your plan said 10 years you have every right to know if the data has changed over those 5 years and the guidelines suggest stopping.

I saw this chat with BCN live with oncologist Dr Marina Parton talking about hormone therapy and that taking for 5 years can have cumulative effect over 20 years. So that’s a positive.

Here’s the link if you want to watch

I’m upset for you that your GP didn’t take the high cholesterol seriously as it is listed as a side effect of Letrozole and a discussion about statins should have been had. I had slightly high cholesterol before bc and a heart issue, so I pushed the GP to have annual checks. 2nd year they said QRisk was low, which was incorrect having spoke to the British Heart Foundation as they hadn’t taken my first degree relative dying of a heart attack into account! I also spoke to my cardiologist, who wanted me to have statins and suddenly the GP changed their mind. A couple of months on statins and my cholesterol is really good. No extra side effects of top of my Aromatase Inhibitors that I can tell. Still worth asking for a cholesterol blood test.

I think moving from annual mammograms to 3 yearly is always scary. I’ve had 2 annual so far and think I’d be the same as you. I did ask why and was told that after 5 years your risk of recurrence is roughly the same as the rest of the population by then. So that’s good. And as already said, after 70 you can ask your local breast screening to be checked 3 yearly on the NHS.

https://phw.nhs.wales/services-and-teams/screening/breast-screening/breast-screening-public-information/leaflets/breast-screening-for-women-over-70/

Take care

:smiling_face_with_three_hearts:

Thanks so much for all the info. I will get back to them and also see if my GP can help - while I’m relieved to come off Letrozole, I would like some information as to how this 5 year decision was made. I just had another bone scan yesterday so we’ll see how that looks, I’m really not happy to develop osteoporosis but my last DEXA scan in 2023 was OK.

As far as mammograms go I do consider them reassuring even if not perfect. I had bilateral DCIS and nobody could feel any lumps so the mammogram found it. The worst thing was having to have wires shoved into my boobs (with anaesthetic) so that the surgeon could look on the screen to see where the tumours were.

I am hoping that’s it, at least for a while. I’m 62 now and if I can have a break at least until I’m 70 that would be nice.

2 Likes

blue3 I am on Letrazol 4 months now and have no side effects whatsoever, so you may not necessarily have any problems with it.

Apologies for not being able to spell Guinness