Thanks Wendy22. It's good to know you are well two years in and your decision not to take AIs is based on the same considerations as my partner - the benefits are not significant enough to outweigh the disadvantages. I do accept that this is a very personal decision and all circumstances are different but many thanks to everyone who has contributed to this discussion and for sharing their own experiences and views.

I'm with you here ..... the mastecomy was the easy part ......... I'm less than 1 year into the hormone blocking drug therapy - I've lost so much hair that to go out socially I need to wear a wig (baseball cap works for shopping) my wrinkles used to be invisible when I viewed them without my specs .... I now look old in the mirror without visual aids --- no idea what is going on down below but judging by the itching and soreness doubt it's useable so an end to any possible sex life.  I feel like a need a hip replacement .... my hands itch to hell and I can barely bend my fingers ...... I burst into tears at the slightest thing .. frankly if I was the family pet dog they would consider euthanising me !!! 

I just want the best quality of life for as long as is possible ........ I don't want years of drawn out misery 'fighting the impossible fight' I'm seriously considering stopping the drugs ..... I'm 65

you're lucky ........ 6 months on Letrozole and I could barely walk with hip pain ... 8 days after stopping the drug I was back out walking my dog up hill down dale avge 5 miles per day - I think it's clear we all react differently to these aromatase inhibitors and we have to assess for ourselves the impact it has on our lives.......... for me not being able to go out in the hills walking the dog for the next 10 years - sounds more like a prison sentence than a cure ............ I'm so thinking about stopping the new drug Exemestane and I have a really poor prognosis and I should be the person in here who's advocating drug adherence - I had 12 positive lymph nodes ........ for me I think I'd just like to live whatever life I have left to the full ........... sitting at home nursing aches and pains, hiding my balding head and feeling miserable with the drug induced depression does not seem like any sort of desirable life ........

nhs predict gives me 13% advantage of Hormone therapy ...... but that still doesn't get me to 50% chance of 5 year survival .................... so if there was 2 of me one of us maybe has a slight chance of survival if I take the drug but what liklihood ? ............. so even at the other end of the nhs predict spectrum ........ it all comes down to 'QUALITY OF LIFE'

Hi! It was me who started this post thread and for years I have been following your replies with interest.  When I originally talked to my oncologist about the side effects I was experiencing, especially the carpal tunnel ops, and foot pains when walking (burning sensations that meant I could only walk several hundred yards at best without needing to 'take the weight off'), they said it was not a side effect. One of the last times I saw my oncologist before being discharged, they agreed that the drug had done the damage.  I switched to Tamoxifen after about 2 years because I could no longer bear the pain and disabling effects...and within a week or so, the worst of the 'stiffening up' had gone. It took about 6 or 7 years before I didn't feel like I was holding my friends back when out shopping or walking!  I gave up the Tamoxifen around 2021, when I had been on the drugs for about 9 years. My weight had been creeping up but otherwise I was fine!

I now have yearly mammograms and have had clear results so far. Diagnosed in 2011, I had had lumpectomies, removal of al lymph nodes on the rhs, heavy duty chemo (so they told me!) and radiotherapy. And I'm still alive and kicking! Yay.

They reckoned that the aromatase inhibitors were the best drugs for my cancer, but they ruined my daily life so much that I would have taken nothing at all if Tamoxifen had not been offered.  I still cannot wear heels at all, but that, having major hot flushes still, and being fatter than I would like, are all manageable things.  Rather than take nothing at all, maybe see if you could opt for an alternative?  
 

Hi Kathy 24, 

I am similar age to you, and thinking if I will continue with Letrazole. Knees ache on exercise, recently tongue mouth on fire, palpitations suddenly from nowhere at rest now worried. The mouth is unbearable.  Have tried taking med at bedtime & sit all day taking ice, cut fruits like pineapple & bitter lemon drinks. Its early days 18 weeks Inhibitor., 10 weeks post op. No chemo, still waiting radiotherapy. Thanks to all for posts I relate to all of them. Pip