I had breast cancer removed Aug 2013.  Started on Letrozole April 2014 for a year but because of aches & pains I got moved onto Anastrozole.  At first I thought it was better, but been on it now for over 2 years & I'm crippled with joint pain, shoulders, hips, knees, particularly left leg, foot deformed, bakers cyst behind left knee.  I'd asked consultant if I could stop it.  He said no & offered Tamoxifen, I said no.  2 weeks ago I went to GP who offered me a break for a month to see if there was improvement.  So I've stopped taking it.  I value quality of life.  My bakers cyst has reduced & hot flushes have stopped!  I've been cold.  Haven't been cold in over 3 years. In 2 years by bone density has gone from above average to osteopenia of the spine.  I know someone who has been on it for 6 years without any side effects.  It must affect people who are prone to arthritis.  My cancer was the most oestrogen positive you could get, but a risk I'm prepared to take rather than suffering.  Also had the insomnia & itching, take antihystamines to control it & constipation.  But prone to the latter two anyway.

Always remember it is your choice to make. Do some research to back you up, there’s lots on here so that you know more about it the next time you see the doctor. Think carefully about what you want, and the possible risks. Everyone is different. For me the side effects are just too much to bear currently, I’m seeing a shoulder specialist tomorrow because of problems there, and I’ve done my part with physiotherapy , over 6 months, injections and exercise and still I can’t fasten my bra, or sleep at night from the pain.  I need to feel some kind of “normal” for a while. Maybe this will only be a break and I will be given something else later, but it will be my choice.

Best wishes and good luck.

Hi,Ali,

it’s now 10 months since I stopped Letrozole and the joint pains in my legs and muscle pains have all but disappeared. I tried Tamoxifen for a short while but that was the same so stopped. It does take a long time for the side effects to disappear. 

Re your shoulders, get some physio if you can before it stiffens. I had that too and was told it’s common after radiotherapy, unfortunately mine developed and I had to have a shoulder replacement due to arthritis. Sometimes you think these pains are never going to end but one day you realise how much better you are and you haven’t noticed, I hope this helps. 

Hi Ali,

I have had 2 bouts of breast cancer. The first time I had a lumpectomy followed by Tamoxifen for 1 year. For the second bout, I had a double mastectomy, followed by Letrozole for 6 years. I did not have any radiotherapy or chemotherapy.

I had side-effects with both Tamoxifen and Letrozole. I stopped taking the Letrozole in July 2017, but am still having pain in both arms, legs and back.

Kind regards,

Jolamine xx

Hi can I ask what the herceptin injection is that u have as I have zoladex once a month as I couldn't have had the letrozole as I was prw menopausal not post. I feel ur pain wen u say ur shoulders hurt as mine do to I feel like somebody heavy is permebtly satin them and it's all down my arms as well.my bones click I struggle to bend over most days and my knees especially right knee is getting so bad if it's bent for just a minot then it hurts to straighten and stand on and my left knee feels it's going same way. My hips hurt my back my bum gets cramp if I walk too much sometimes as well. My daughter tried rubbing my shoulders for me and she's no masseuse but she said I am all knotty and need sorting. I have been given codeine and naproxen from doctor and not even taken together dotvey work not even with paracetamol and ibuprofen either. I had thought of mayb buying one of those criss trainer machines but worry cuz of my knees or fact I have oestwopenia does anyone know if it wud help me 

Hi Shazbo, I took Herceptin because my cancer was her2 positive. It was my 2nd bout of breast cancer as a year after my first diagnosis they found it on my follow up mammogram!

I stopped taking Letrozole 7 months after starting it as I felt dreadful! I discussed everything with my Oncologist first though.  It was having such a detrimental effect on my quality of life that we both decided it was best for me not to take it.  

It is 2 years since my mastectomy this month and I still get pain in my breast and under my arm.  I do check in with my breast nurse whenever the worry takes over!  But after radio, chemo, herceptin and 3 ups I think its one of those things!

I take vitamin D, loratadine and turmeric with black pepper tablets each day.  The loratadine has been proven to help with bone pain after chemo and turmeric for the joints.

When my shoulders seized up the physio definitely turned things round for me so definitely push for that.  Ibuprofen also helped .

I am still a creaking gate at almost 53 but I am back teaching full time and have been since Sept 2018.  I pray every day and thank God everyday that I am where I am.

Keep going Shazby but get the help that you need.

Lots of love xx

Oh Shazbo, I'm so sorry you're going through all this at your age. I have found that 20 minutes a day on the exercise bike helps as it doesn't impact on your joints. I also do a range of physio exercises that take me about 15 minutes a day but they do help. I've started taking Omega 3 oils too along with turmeric and Accrete D3 to prevent my ostopenia developing into osteoporosis. A warm bath at night with some  epsom  salts in the water seems to help the pain a bit. I'm over 60 now but up to getting cancer was running miles and totally pain free. But I think it is almost manageable provided it doesn't get worse. Try the exercises and warm baths, I hope it helps. Best wishes

I tried a hot bath Friday night and I struggled to get out of it. I am on adcal for my oesteopenia and I pray it don't turn into oesteoporosis I a sleep at night I can't get comfortable everything is a uphill struggle iv been on my own many years now and very independant but this is frustrating as I hate needing help 

Hi, I don't know if this info will help as  I've only been taking Letrozole for 3 months so I'm not sure whether it's long enough for the pain to start kicking in on not, but I started taking Tumeric capsules the same time as the Letrozole and although I have a few dull aches it's nothing that I can't cope with, I do get the hot flushes though. I only mention this because before taking letrozole I suffered for years from crippling arthritic pain in my lower back, that pain has disappeared since taking the Tumeric & left me wondering whether it really has eased the side effects of the letrozole.   

Hi, I don't know if this info will help as  I've only been taking Letrozole for 3 months so I'm not sure whether it's long enough for the pain to start kicking in on not, but I started taking Tumeric capsules the same time as the Letrozole and although I have a few dull aches it's nothing that I can't cope with, I do get the hot flushes though. I only mention this because before taking letrozole I suffered for years from crippling arthritic pain in my lower back, that pain has disappeared since taking the Tumeric & left me wondering whether it really has eased the side effects of the letrozole.