Hello Valmugg,

I am over 3 years past ending my treatment so further along the road than you. However I was prescribed Letrozole after completing the radiotherapy too but only took it for about 3 months and even then I did it intermittently. My body ached and my emotions fell flat. Within a couple of weeks I was a mess. That drug isn't for me!  

However I would never recommend to anyone to follow my example. It DOES mean we are taking a bigger risk. A recurrence is more likely to happen. That's a fact. BUT  I want a quality life. I exercise a lot and eat sensibly (mostly!) Those things help too. My oncologist explained my particular risks and I decided that I was happy to go with that. I MAY come to regret it but so far I absolutely don't. I feel really well and strong and happy not to have a hormonal war going on inside me!!! 

You don't mention your age which is quite an important factor I think. I am 70. Post-menopausal which is a help. If I had been 40 I suspect I would have taken Letrozole. It's hard to know of course but I think so.

I guess we all have to make the decisions we feel comfortable making. I am happy without the hormonal treatment and cannot see me changing my mind on that. I hope you are at peace with your decision which ever way you finally go with it. 
Stay well. 
Kebbs x 
 

Hi Valmugg,

A very warm welcome to our forum.

I agree with all that Kebb has said. However, you have not been taking the Letrozole for long and the side-effects usually settle down after a few months. The risk of stopping it will depend upon what type and stage your cancer is, as some are  more aggressive than others.

I have had 2 bouts of breast cancer and had a lot of side-effects from both Tamoxifen and Letrozole. I even had to have both of my knees replaced as a result of taking Letrozole, but I did perservere with hormone therapy for 7 and a half years. Despite the problems that I've had with Letrozole, I would certainly do it again, as I don't relish another bout. I've had 13 years since diagnosis and still lead a busy and fulfilling life and for that, I am so grateful.

It would certainly be worth discussing this with your breast care nurse or consultant, as there are other treatments which you might cope better with.

Please keep in touch and let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx 

Thank you, Kebbs. I have really been stressed about this, and as you say I believe that it's because of the war going on with my hormones because of taking the letrazole. I am usually a very upbeat person and was, right from the diagnosis last September to waiting for the radiotherapy treatments. I started the letrazole in October and my mood has gone down since. I was shocked by how sore my ribs were and that I could not lay on them. Once I stopped the letrozole this gradually dissipated. I don't want to be like this and having to take other medication to combat the side effects. I have a friend who has never taken it and that was many years ago and she is fine. I will be 72 in September this year. I think I will be much happier without it. Thank you for replying. You have put my mind at rest.

Hi Jolamine. Thank you so much for responding to my post. I have I realise been a different person since taking the letrazole. Initially I didn't think that I was experiencing any side affects however I now realise that my usually upbeat mood has been gradually going downhill and the terrors about the future are not an emotional reaction to the end of treatments but are in fact my hormones being at war. Since making the decision to come off the letrazole I feel so much stronger. It will probably take some time for its affects to stop hence why I am experiencing some painful areas eg wrist. Hopefully this will gradually cease. My sister in law has been taking letrazole for about 18 months and has just had one of her knees replaced. We all have to do what we think is right for us because we are all different individuals. I was assessed as grade 2 Initially which after healing see orenzarifenergy.com and a change in diet see chrisbeatcancer.com meant that by the time I reached surgery last November the lump was classed as a grade 1. I had 3 positive lymph nodes so they took out all 17 to be on the safe side. I will keep you up to date on my progress and thanks again.

Hi Valmugg,

I am delighted to hear that you managed to make changes which reduced your cancer to a grade one instead of a 2 - well done! Do you know what type of breast cancer you had? I had problems with my mood on Letrozole too, but these were worse on Tamoxifen. I ended up taking a mild anti-depressant which helped this.

I look forward to following your progress and hope that all goes well for you.

Kind regards,

Jolamine xx

Val mug 

sorry to jump on thread o can't help on this as I take tanoxifen 

but I read through your post but was I treated to find someone who used Oren Zarif and to no that it actually worked for you ? 
 

love Lara ️

Hi Valmugg,

I decided not to take letrozole at all. I had grade 2 stage IDC in October 2021. No lymph node involvement. I used the NHS predict tool which you can Google. It gave a 2% additional benefit on top of surgery and radiotherapy, I already suffer from osteoarthritis in various joints, I definitely could do without making that worse! Quality of life is important as well as longevity. I'm 57 now, and hope I end up regretting my decision BUT I wrestled with it for ages and kept coming back to the same decision. I don't recommen the same decision for anyone else, you have to listen to your oncologist and make an informed decision. I would say though, that your sore ribs could be a bit of lymphedema after your radiotherapy. I have just had a bout of it again and that's after 18 months. Regular massage with moisturizer helps.

All the best 

Jane

Hi Kebb

I am new on here and I found it really helpful reading your decision to stop Letrozole as I have too after 2 years of chronic pain all over my body. I decided to go for quality of life rather than feeling sick daily and hurting everywhere, some say I'm crazy but I can't live like this anymore I just want me back. I haven't felt any different yet as it's only been 2 weeks but hoping it is soon as it is affecting my ability to do my job also. I haven't told my doctor or hospital as the last time I saw my consultant I was told heartlessly that I need to learn to deal with the pain and move on (ouch) thank you your post really helped

Sorry to jump on this but lymphodema not possible in ribs as this is bone. Surly you mean in the tissue or flesh surrounding rib cage. I got worried as about to have 5 fractions of radiotherapy  and know how frantic I will be if not able to sleep. Plus Breathing for me could be very troublesome as I only have 1& a third lungs so scared of more damage ,I won't cope.pip.