I had my first op December 2021 to remove a lump and as invasive had further op to remove a lymph gland which was clear. I was told that oestrogen was feeding my cancer and so was prescribed letrozole January 2022 for 5 years. I feel a bit dumb reading other posts which include the correct medical terms for the cancer and operations but I do not recall being told much detail apart from DCIS (positive/negative?) and did not ask for more information in writing. I am starting to worry that I have just 2 years left of letrozole and will I then have a higher risk of the cancer returning once I stop the medication.
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Hi @Ceinwen I’m also on Letrozole for 5 years with some terrible side effects, it’s been a year for me and I’m thinking of asking for a 4 week break to see if the side effects go away.
I was told that at 5 years I would have a meeting to decide if I need to definitely stop or whether I need more years or there is another drug to try. I was told they will look at any issues/recurrences over the 5 years as well as how o tolerate the drug.
I would suggest trying to give your breast team a call, you should have open access or you can call the BCN nurses.
Helpline: 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Speak to our trained helpline team. No questions are too big or too small.
Lastly well done for doing 3 years as there are many ladies who stop due to the side effects.
I hope you get the information you need.
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Hi, i had a mastectomy and auxiliary node clearance in March 2019.
I have been on Letrozole now for over 5 years and was told I would need to be on it for 10 years by my oncologist who is very knowledgable and easy to talk with. (Unfortunately for me he has just retired so I will be under a new person. ) I have been lucky that my side effect have been tolerable, however I do have very very bad knee joints now. I can walk but not get up and down stairs easily or up from a low chair which is worrying. I also get very tired.
Letrozole takes the eostrogen out of your body as it is the eostrogen which feeds my cancer. I have been given the option of changing to Tamoxifen for 3 months to see if it helps my joints but that also has some nasty side effects. I have decided I will carry on with Letrozole if it can keep my cancer away. They say 10 years is enough to do this hopefully but of course there are no certainties. Do speak with your breast care nurse or oncologist as naughty-boob suggests because it is they who should explain and answer your questions.
I wish you well. Take care.
Sunshine21.
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Thanks naughty boob for taking the time to respond. I had hot flushes at the beginning with letrozole and have back pain, but then I had back pain previously to taking letrozole so time will tell if there will be a difference once I am not on this medication. After I started taking letrozole I was diagnosed with Osteoporosis and the doctor said that whilst letrozole would not have caused it, the condition would have been made worse by taking letrozole. One doctor said that you do not have joint pain with Osteoporosis but another said of course you do. I have been prescribed calcium tablets and annual infusion for my bones. Of course I still think it is worth taking letrozole if there is a chance that the medication stops cancer returning.
I will call my breast care nurses as you suggest to get more information about this.
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Thank you sunshine21 for your response also. Yes I think I need to speak to my breast care nurse regarding taking letrozole and for how long, why do they suggest 5 years for some and 10 years for others. I don’t think of questions when I see the Consultant and only much later when it is too late. I hadn’t thought of contacting the breast care nurses and I still have the card they gave me with their names and telephone number. Good advice, thank you.
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Hi Ceinwen,
I completely understand where you’re coming from here. I’m three years into hormone therapy after my mastectomy. I had two years on Tamoxifen (it was fine), and I’m one year into Letrozole. Tolerating Accord brand really well after trying various brands - some of which made me feel awful. Why is this I wonder, but it really can make a difference. I’ve only got 2 years to go and that’s it! I’m really anxious about what then. I didn’t have any other treatment apart from mastectomy. I’m determined I’m going to ask to stay on the Letrozole for longer, certainly up to 7 years but worry what to do if it’s refused. Interested in anyone else’s experience over this.
All the best x
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Maybe try Exemestane, I changed to that from Letrozole and I find the symptoms less harsh.
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Interesting to read everyone’s experiences and sorry for what you’re going through but pleased you’re coping. Mastectomy etc 5 years ago, and was told anastrozole for 5 years then tamoxifen for 5. Saw the consultant in December and he decided to keep me on anastrozole because of side effects of tamoxifen affecting eyes and heart!! I’m ok with that but the bone pain has been much worse this last few months. Making my knees worse, like you, stairs etc. Changed brands again. I think this cold weather makes it worse too. Just need to keep going as I’ve a 97 year old mother to look after!! Best wishes to you all.
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Hiya all, been a while since I’ve been on here but I was looking for info on Letrozole side effects and brands.
I had Er+Pr+Her2low breast cancer diagnosed 5 years ago this week. 3 nodes involved. Had lumpectomy and 17 nodes removed, 3 were positive. 2020 for me was operation, chemo x 6 and radiotherapyx20…then Letrozole for 7 years (started taking it sept '20 at the end of treatment. Ovaries removed in June '21.
I never questioned it, although it has been a struggle…Everything fine until 22nd Dec…turns out I’ve reacted to a different brand AMAROX… I should be back on my preferred Accord brand by Monday and then I’ll continue for as long as it keeps the pesky cancer away. Not had a tablet for a week now but from what I understand that won’t alter any outcomes.
Didn’t realise that the ‘packers’ and additives could cause such differing reactions.
Good luck with all of your journeys
May 2025 be good for us all.
x
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