hi sugarpuff, i too had same cancer as you picked up almost three years ago with mamagram refused chem fec but had three weeks radiotherapy then put on arimidex for five years was in total agony and im a very tough cookie my oncologist  said try to persevere i did so for a year life was awful as i live alone and love gardening couldnt pick kettle up some days pain in my feet hands shoulders neck hips knees and no sleep as keep waking up with numb tingling fingers i said cant take anymore so she then put me on exemerstane that was not so bad for a couple of months but now im in agony again my surgeon said when i see her again which will be august to ask for tamoxifen to be honest i dont think any are any different i just hope after five years it all stops no one seems to know i call it a living hell, sorry i cant be more helpful i dread each day as this is not quality of life. regards sandy

Hi....this is now 2020 and hoping to reach sugarpuff as I could have written her post.    I have been on femera for just over two and a half years and basically have come to a grinding halt.   Wrist tendinitis in both wrists, De Quervains tendinitis in both thumbs and tendon problems in some fingers.   Also feet have similar problems which is made worse with having crps in feet.  In all I am a wreck ️.  Oncologist has given me a month off and then tamoxifen but quite honestly I want to stop all together as I too work with my hands and fear I will have ever lasting problems.

Hoping sugerpuff you find this post post as I would love to know what your outcome was after 7 years .

obviously any other viewpoints too would be greatfully welcomed too.  

Hi   I had a lumpectomy and full lymph gland removal in April 2020 and was given Letrozole to take for 10 years.   I am only into just over a month and already my hair is falling out in handfuls, my skin has aged terribly, have pins and needles in my feet and hands, cannot sleep at all, if I get 2 hours per night that's a gift.  I cannot bear the thought of ten years on this drug so my consultant changed me onto Anastrozole, but I feel this different drug will have the same side effects.  I am constantly tired, and have trouble concentrating.  I really do not want to take them but my consulltant is constantly saying that I need to take them to stop the cancer coming back.  I just do not know what to do.    I have a job that I will probably lose if I am constantly tired, and also driving is now dangerous for me.      I am thoroughly depressed about this.

Hi susanmanchester

I understand completely where you are coming from but living for 10 years (and I will not be far off 80 when this is up) with this horrible drug is causing me severe depression.  Before I was diagnosed with cancer I was active, vibrant with a lust for life, on a good diet, not overweight, in the gym 3 to 4 times a week.  I have now turned into a virtual depressed, going bald cripple in constant pain, sleep deprivation is the worst thing ever, that can cause even more health problems, I am covered in saggy skin and wrinkles and all this to increase my chances of it coming back by 6%.  This is what the oncologist quoted. All this has happened in less than 2 months! If this is living then count me out, I would rather have a few years of a good life than 10+ years of hell.

Hi 

i do understand but you need to speak to your onc before doing anything. My figure is also 6 per cent but that is the difference it makes in long-term survival ie mortality not recurrence which AIs can stop by up to 50 per cent. Before they existed most women with early stage BC with no lymph node involvement had a 50-60 per cent chance of surviving 10 years. Now it is over 80 per cent . And rising . If you stop tomorrow that immediately increases risk so it is not a case of a 'few good years' necessarily but immediate impact. I do not want to scare you but my sister stopped taking Tamoxifen - within a year she had secondary liver cancer. If you are depressed take meds for it - it helps massively. Take advice on the hair ( that is not typical ) and try and persevere with exercise. My shoulder issues are starting to get better I have switched brand of Letrozole and already have less joint pain. I am not like I was before but at 62 I am not prepared to die just yet. Please seek more advice 

Hi there

I respect your decision, I really do, you are brave.  It's a gamble I know but I have a friend who refused Tamoxifen and is doing just fine - that was 8 years ago. (I cannot take Tamoxifen as I am extremely high risk of DVT) I am going to take the risk and tell my Onc that I cannot live like this and to stop the tablets, there is no point changing to another make/brand as they all do the same thing.  I have been on anti depressants a few years ago and I dont want to go back to it.  I took advice on my hair from the breast nurse and she suggested a wig!  I cannot persevere with exercise as I am racked with pain and cannot get out of bed because of tiredness.  I have a nice little job as well and I am in danger of losing it, putting me in severe financial difficulties.  It's a vicious circle.  I am not in anyway suggesting that others do the same, it's just me,  I have no fight left.

Hi Babs,

I am with you on this.  I had to be really talked into taking this treatment after my surgeries.  I didn't need rads and chemo wasn't pushed at me but the aromatase inhibitors and bisphosphonates were.  After two months of refusing them my GP, got me to agree purely on the condition that if they made my life miserable I would stop taking them. I totally refused the bisphosphonates on the grounds that taking them would only increase my life expectation at ten years by 1% and everyone I knew who had taken them had thought they were dying for a week after the infusion. I eventually started on a generic Letrozole and up to now , six months on, I t has been bearable but I am gradually getting more of the painful symptoms you mention.  As I said, still bearable and I have a pretty high pain threshold, so I might get through the five years I've been told to take them but if they start to make me suffer as you are suffering there is no way I will continue with them.  What is the point of keeping yourself alive for longer if you feel that life isn't worth living. I am 73, I would prefer a shorter happy life to a longer miserable one.

Christine x

Hi Christine

 I really hope that the side effects do not get worse for you.  What makes it so bad for me is that i have been told that I must take these tablet for 10 years.   I will be nearly 80 by that time and would have spent my late 60's and through my 70's miserable as hell.   I have changed from Letrozole to Anastrozole, but so far no change in the side effects, however I am going to give them a long run.  I have a follow up appointment in October with the Oncologist and will discuss it then.  All I know is I have gone from a young looking, vibrant, gym going, healthy, fun loving person to a pain racked, sleep deprived, misery, with hair loss and crepey skin hanging from my arms and thighs. Also a fuzzy head with lack of concentration.  Friends were shocked at how I have changed and all of them have said they would not take this medication, but have a good, if shorter, fulfilled life.

Babs  x

Hi Sugarpuff

I have had bad side effects from Letrozole and Exemasane, hot flushes sweats, aches in my joints, carpal tunnel, depression, short of breath and my eye has  been twitching. I have decided to stop taking them. I am 75 and can't face feeling so ill for the next ten years. I am going to see if I can find a natural alternative. I know the doctors say to persevere with these drugs but my Onco DX score is only 6 and I didn't need chemotherapy, just five doses of radiotherapy and these drugs have a limited effect.

i suppose we all need to decide for ourselves but I would rather have a shorter life without all the unpleasant side effects.

Kind regards