Hello & Letrozole question

Hi everyone

I've just joined the forum and looking forward to connecting with you all.

I've just been diagnosed with breast cancer and will have surgery and reconstruction in August.  As my tumour is Estrogen Receptive, I've been given Letrozole to take.

I'm really concerned about the possible side effects and wonder if anyone has any advice about this medication?

All thanks in advance

 

  • Hi [@Annabel_10]‍ sorry to hear you have recently been diagnosed with breast cancer. This forum is brilliant for talking with others and connecting when you feel like life has turned upside down. I also had an ER positive breast cancer (had surgery in Feb but just a lumpectomy and then radiotherapy) and was put on Anastrozole which is another aromatase  inhibitor like Letrozole thst works in the same way. I was really worried about the side effects as they sounded awful and a lot of women have an awful time on these types of drugs. I'm happy to report though that after 3 months of being on it I'd hardly know. I've had a handful of very brief hot flushes and some very mild joint pain with stiff knees and joints but that has eased right off and I feel pretty much normal. I had my bone density scan done and waiting on results for that as these drugs cause bone thinning but the radiographer thought my bone scores looked fine. It's very individual and the only way to know is to give them a try. You might be fine like me or you might find them challenging but until you try you won't know and you can discuss with your oncologist at your 8 week follow up (or earlier if you're struggling). I take mine at 10pm every night (an alarm on my phone helps!) and weirdly I've slept better than I have in years since starting on them. I used to have such awful insomnia and night sweats when going through menopause recently.

    Good luck with the surgery and reconstruction. You feel like you are on a conveyor belt as you go through treatment without time to really process it all fully until afterwards so being kind to yourself really helps.

    PS I have found that keeping active has really helped with side effects so if you can manage it I'd recommend it.

    Take care x

  • Thanks so much for your reply and it's great to hear something positive about the medication.  Most of the things I've read have been pretty negative and I'm trying to balance the obvious benefits of taking it with the downsides!  

    That's really interesting to read about the improvement in your sleeping - that's great!  Good tip about keeping active too.  Thanks.

    How are you doing now after your treatment?

  • Sorry to hear about your diagnosis.  I have been on letrozole for nearly 5 years now.  Before that I had tamoxifen for 5 years.  I do run to the toilet and my hair has thinned but that could just be the menopause.  The side effects are heavily outweighed by the fact that letrozole controls and stops the cancer coming back.

    I had to have an operation, chemo and radiotherapy as my cancer was aggressive and had gone into the lymph nodes.  I am hoping to be discharged this year from having my yearly check ups and come off the letrozole.  The benefits have outweighed the negatives for me and I have been checked for my bone density and given calcium tablets whilst taking them. Take care 

  • As already mentioned, each individual can have different side effects, and to a different level.  If you don't cope so well on a particular brand, then try another until you find one you tolerate best

    I've had to change from one  brand but the brand I'm taking now is much better.  I don't tend to tolerate these tablets well, though, unfortunately but that does't mean you will have issues.

    Just a tip, if  you want to try different brands, order your Letrozole at a different time from any other meds, so it's on it's own script, which  you can then take to other pharmacies to find the brand you're wanting.

    Wishing you the best of luck

  • Hi Georgina

    Many thanks for your response.  It's been so helpful to hear your experience and to understand that overall the benefits are likely to outweigh any side effects I might experience.  

    I'm so glad to hear that it sounds as if your treatment has had a really good outcome  and really hope that you will indeed be discharged this year.  Everything crossed for you.

    Take care and all best.

     

  • Hi and thanks so much for your response.  That's a really helpful tip about having the letrozole on a separate prescription - thanks.  

    It's good to know that there are other medications out there to try if the Letrozole is proving difficult.

    I've agreed with my Macmillan nurse to give the Letrozole a try for a month until my surgery and then we can reassess.  So I'm happy with that.  

    Wishing you the best of luck too.