Hello - have just stumbled across this forum… I’ve just finished a course of radiotherapy following my operation for breast cancer in May. Now I’m supposed to take Letrozole for the next five years but have read all about the side effects on the NHS website and… I don’t want to take them. Can’t deal with feeling rubbish - more than I already do. I feel very conflicted about this… and very surprised that I’ve started thinking like this… am I taking a crazy gamble by not taking them? Are there people out there who have not taken Letrozole? Thank you.
I understand your worries. I am currently on Anastrozole, my mum is on Letrozole (she is 89 years). And she had no surgery and its certainly shrunk her tumour.
I think they all make you feel rubbish, but the uncertainty of not taking them fights the other part of your brain.
I’m on zoladex also, so that too will be making me feel crappy.
Depending on your circumstances you may be able to take Tamoxifen as an alternative. Maybe slightly less effective but maybe more bearable. (?)
I started exemestane, with the Zoladex about a year ago. The 5 years is hard to swallow, but I just move the goal posts in my head, to something achievable. They do say “one day at a time” which may be helpful to some.
This is a good place to come to and I recommend the moving forward course to sign up. Liz O’Riordan is also helpful on twitter or Instagram if you have either, or get her book.
Good luck
I take Tamoxifen but when I read the information about it and saw comments on line, I thought twice. However, I have had no side effects at all. Bear in mind that if you read the safety information about paracetamol, you might think twice about that too! Most women tolerate these drugs well, and are the silent majority.
Hi, I hope this helps. I’m on the other side of the pond, so maybe things are different. I started with generic letrozole about 15 months ago. I had about 8 or so hot flashes per day, which wasn’t great. I also noticed that all the research about letrozole had be done with the name brand Femara so I didn’t feel confident about the generic. That is, there wasn’t really any long term studies using the generic. (generics only have to contain 80%-120% of the name brand’s active ingredients). So I asked for the name brand “femara” and after some convincing I got it. The hot flashes stopped immediately and have not returned in a year.
I don’t know what other side effects would be mitigated by switching to name brand, if any. I do know that the company has financial help if you can’t afford the name brand-not sure how hard that is to get.
If this helps my bone density is still good after 15 months-I walk every day for that…
Good luck and keep asking for what you deserve.
I’ve now been on Letrozole since February 2022 and, being post-menauposal with hot flushes who has never taken HRT, have not noticed any side effects, but it maybe very different for younger women! On the other hand I can say something about the effectiveness of Leztrozole in my case. As I had not that small a tumour (largest dimension 32 mm) in a small breast, the surgeon suggested me starting on Leztrozole to try and see if the tumour would get small enough to go for a lumpectomy instead of a mastectomy. By May 2022 the ultrasound scan did not show a significant change in tumour size, so I went for a mastectomy on 23rd June. But then, it was evident that the tumour had shrunk somewhat (largest dimension 19 mm). Also, by accident, I had an Oncotype DX genomic assay done on both the original biopsy from January (pre-letrozole) with a score of 41 and the tumour taken during surgery (nearly 5 months after starting Leztrozole) with a score of 23. So the Leztrozole has not only shrunk the tumour, it has also made the cancer less active. This does not stop me from going on a course of chemotherapy as a prevention against recurrence, using a ‘belt and braces’ approach to minimise the risk of the cancer coming back!