glad I read this. I have been on anastrozole 3 years and complained of joint pain. Was given a month rest then put on letrozole. Oh my god been on it a month and I just want to lie down and die cannot take this pain any longer day and night. Constant headache shoulders hips knees feet hands. And I have a good pain threshold. Not taking it again 

Update my Doc took new blood test after I stopped taliking Letrozole. My liver enzymes had risen whilst on it, they went back to normal once I stopped taking it! . No more Letorzole for me, still have bone pain 

I stopped taking Letrozole in 2017 after too much bone pain, I had a shoulder replacement in 2018, a knee replacement in 2019 and my other knee is being done in January 2020. So many reports of bone pains yet still it is prescribed.

for a while I took nothing then a new consultant gave a different drug

I now take aromasin also called EXEMESTANE .

dont just suffer, talk to your consultants, there are alternatives out there ladies.

Hello, I've just been diagnosed and need a lumpectomy. I'm eighty three and about to start on Letrozole. The side effects sound frightening so I came online and found this chat room. It seems like I'm right to be worried! I don't know whether to start on the pills or not. I'm not sure at my age whether I am strong enough for the operation and radiotherapy - mentally or physically.

I wondered if anyone regrets coming off, or going on, Letrozole, and if anyone my age has any information generally.

I would say have the lumpectomy & then radiotherapy if you need it.  It doesn't happen together.  They wait until you're healed.  Radiotherapy didn't start till 3 months after op for me.  They need to examine what they remove to make sure they've clear margins & if you need further treatment.  If the tumour is oestrogen positive/receptive then you get prescribed, in my case, Letrozole then Anastrozole then Tamoxifen.  The new one is Exemestane.  Letrozole is to reduce the oestrogen level which the cancer feeds upon.  At 83 I don't think I would start Letrozole.  Unless it is to shrink it before removal?

Hello Musiclady

Welcome to the forum,

I am so sorry to hear that you have just been diagnosed and need a lumpectomy. We all react differently to drugs and, some people have no side effects to Letrozole, whilst others do. There are a number of people who have come off Letrozole on this site. Most of them have changed to other drugs instead.

If you start on Letrozole and experience side-effects, you can always stop them or change to something else. Nothing is caste in stone. I am 70 and didn't feel strong enough for an operation either, but you get through it when you have to. I had a lumpectomy 10 years ago, followed by a double mastectomy for a second bout 9 years ago. I took Tamoxifen for the first year and Letrozole for the following 6. Unfortunately, I had a number of side-effects,but stuck with it to the end. The main reason for this was that I didn't have radiotherapy or chemotherapy.

Have you discussed the statistics foor taking Letrozole as opposed to taking other medication or none? Your consultant should be able to provide these for you. I wouldn't take any medication without knowing the odds for all the available options.  I don't know what type, grade or stage your cancer is at and, I am not a doctor, but I understand that it is not always as aggressive in elderly people, so this should improve your chances too.

If you want to read some other posts about coming off Letrozole, use the search engine on this site, but, bear in mind that these are only the negative experiences of Letrozole. We seldom hear about the many positive ones.

To get to the search, go to the top of this page and click on 'search' on the left, then insert coming off Letrozole or something similar. This will bring up previous posts on the topic.

I hope that someone closer to your age comes along to tell you  about their experience and, hope that you reach the right decision for you.

Do please keep in touch and let us know how you are getting on. We are always here for you.

Kind regards,

Jlamine xx

Thank you ClaireBr and Jolamine for your replies. The consultant just said to take Letrozole and that I will need to continue after the operation for five years. No alternative was mentioned. I'm afraid I took it all on trust it is only now I'm starting to wonder why and worry about the long list of side effects.

But from what you say I will certaily speak to the consultant again and ask why at my age I need Letrozole and if it is the best thing. Thank you again.

I suspect they start us on Letrozole because it is the cheapest.  As a timeline, I had my op in late August, radiotherapy the following Nov and didn't start meds till the following April.  They need to find out if the tumour is oestrogen positive first before starting on Letrozole.

I'm using EXEMESTANE with not much in side effects, few hot flushes. I had Anastrozole then Letrozole then tamoxifen and gave up in despair.  A new consultant gave me EXEMESTANE. I'm just coming up to my five years and will be 70 next year.

Hi Musiclady,

You will find it helpful to write down a list of questions before you next see your consultant, as it is all too easy to forget something important at the time. Do you have a family member or friend who can accompany you to your appointments.This can be helpful too.

Don't be afraid to ask questions My main one in your case would be 'By what percentage does he expect Letrozole to prolong your life?'

Kind regards,

Jolamine xx

I am making a list and yes, I will be asking why I need Letrozole at my age for so long. It's interesting to hear about the alternative drugs. If I do get bad side effects I shall be asking about them!

My son will go with me, unfortunatley no other family near by.

Best wishes to you all

Hi Musiclady,

It is normal to take Letrozole for 5 years. In fact some oncologists are now recommending that we take it for 10 years, so don't worry about the length of time that you're taking it for.

I'm glad to hear that your son will be attending your appointment with you. It can be helpful to have 2 of you to ask the necessary questions.

Kind regards,

Jolamine xx

Hi Musiclady,

It is normal to take Letrozole for 5 years. In fact some oncologists are now recommending that we take it for 10 years, so don't worry about the length of time that you're taking it for.

I'm glad to hear that your son will be attending your appointment with you. It can be helpful to have 2 of you to ask the necessary questions.

Kind regards,

Jolamine xx

Hello,

Reading all your posts has made me feel so reassured. I had a lumpectomy and radiotherapy in Jan-Apr 2017. I've been taking Letrozole since then and have been so achy - souls of my feet when I get out of bed, looks like I'm getting arthritis, weight gain, hot flushes, the whole shabang! My doctor told me that it's really important to exercise, which I did at first but I'm now so lethargic, tired and achy that it's tricky. Any advice gratefully received! 
 

A x

Change onto some other drug.

Most definitely change to another drug! If you read everything on here about letrozole you will see that nothing you do, exercise etc, will make a difference. Your GP can't change it, he can only write to your consultant for him or her to change it. Contact your consultant secretary and ask to be changed. He may want to see you, or even phone you if he's good, but he can then issue a new prescription and write to your GP for repeat prescription.

there are alternatives, Anastrozole, tamoxifen, and a newer one EXEMESTANE also called Aromasin. I'm on Aromasin with few side effects after trying all of the above.

Remember you are going to be on this drug for 5 years, and then they ask you to do another five years! It's a long time to feel so old and achy, it's your life. You have survived cancer and now you deserve to be able to live a better life. Stand your ground, they will help you find alternatives if you push.  Good luck. 

hi all I'm due to start letrizole soon advise of the oncologist I'm seriously dreading it after reading the reviews & posts about the side affects I already have osteoarthritis in most joints that Is deliberating  but I do self manage quite well with gentle excercise swimming   and Pilates that does help and pain relief I'm just thinking that this letrozole sounds evil and just might finally finish my quality of life I also work 30hrs and need to keep myself as good as possible I'm hoping to go back to work in the new year after whatever treatment I get has finished I'm hoping it's just radiation and tablets I won't know if chemo is on the menu until next week when the Oncotype has come back hopefully with a score in my favour  so I'm just thinking is this tablet going to make my joints and bones worse the oncologist did mention that I'd take a bone strengthening tablet along side of letrizole to stop bone thinning and that I'd be monitored for unwanted side effects .

marie x

All you can do is try it. I read all the side effects tales AFTER going on Letrozole and then realised why I was suffering so much. I'm much better on Aromasin but everyone is different. Don't suffer in silence though, speak out, keep a diary of aches etc to show your doctors.

Good luck.

sue

Hi, I'm new to this chat line...and find it very helpful in me making the decision to stop taking Letrozole...I was taking Tamoxifen for 2 years then 5 years Letrozole...the side effects for me is: weight gain, aches, fatique and hot sweats which often a lot during the day and night time.  I am going to try for 3 months and see how I get on.  I think quality of life is good and as long as I keep up with regulary exercise and a good healthy diet it may do the trick.  I am 61 and I think one gets to the time of ones life that enough is enough.  My husband has agreed with my decision.  2 years ago my Oncologist said to give it a try so I am now doing that.  I dont see anyone anymore which is great as I have been given the all clear.  I am a bit nervous about stopping but its all about QUALITY OF LIFE....

All the best to all the readers...regards Sue Fielder (Kent)

Thank you for replying to my aches and pains...its a good idea writing down how I am feeling. After reading lots of womans stories I;m not doing too badly but I just feel I want to give my body a break from it and to manage not taking Letrozole by following a good healthy diet.  I know the doctors will say to me its upto me.  I will be contacting my doctors to have have them advise me...or phone the McMillian nurses for advise.  They say Letrozole takes quite sometime to get out of your system.

Best wishes

Sue F

Hi Sue,

Welcome to the forum. I am sorry to hear about the problems that you are having with Letrozole. If you have already taken Tamoxifen for 2 years and Letrozole for 5 you have done pretty well. Initially we only had to take these for 5 years, but they are now advising people to take them for 10 in some cases.

I have had 2 bouts of breast cancer and took Tamoxifen for a year before changing to Letrozole for 6. I finished taking this in July 2017. I had a number of side-effects with both and still have some of the problems that they caused. Do chat with your consultant'oncologist befoere stopping altogether, as they may feel it better to give you one of the other drugs instead.

Please let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx