Hello everyone, I’m 55 and ten months post RT, following lumpectomy and various infections, lymphedema etc last year. I’ve been on Letrozole for 9 months with furious flushes, joint pain, brain fog and much difficulty sleeping.
I lost my sister to breast cancer and I’ve struggled hugely with my mental health since my diagnoses. I have attended the Moving Forward course, I’m getting therapy too, but I just cannot imagine being able to do my (stressful long hours) job with the way I feel in terms of mentally and physically.
I’m fortunate I have an insurance policy which covers most of my income, however I worry constantly about this as I expected by now to be back at work and , I still feel a long way off it….
How do you manage Letrozole side effects at work?
Anyone else been off long term post treatment? Anyone decide to do something completely different? Did your insurance company support you? Sorry lots of questions…. Thank you
Hi I’m sorry you are having such a horrible time .Have you talked about trying one of the other hormone therapies with your doctor ? Some people find that the side effects can be less severe on different types of medication.
Thank you. I have checked and only Letrozole for me - they said 7 years likely.
They won’t consider Exemestane ?
Nothing else been tabled. I can manage the letrozole effect while I’m at home - I just don’t think I can manage it in a stressful working environment where I can’t just take a break / time iut.
Sorry time is so rough for you currently. I had severe menopause difficulties when taken off my HRT and put onto tamoxifen. The only thing that worked for me was Gabapentin for the hot flushes. Reduced them by about 90 %. Made a huge difference to how I felt.
Sorry you are struggling @blondie1, ask all the questions you want. We are all here to help each other.
I was off a good few months after treatment ended and when I did go back I went to a new job. A much less stressful and physically demanding one which helped. For the brain fog, cognition issues I found writing everything down helped massively.
Your employer has to allow reasonable adjustments for you now as well so maybe it’s an idea to have a frank, open and honest discussion with them.
I struggle with my mental health quite a lot too since being diagnosed but have found being with people at work helps a little. I only do 2 days a week and they are spread out through the week so that gives me time in between to rest as well.
I hope you can get something sorted that works for you🥰
Hi @blondie1
Have u thought about taking ill health retirement? I know it seems like a shock , it took me a long while to get my head around it but I did it in the end. There’s no way I could manage my long hours very stressful job either! I was 55 and thought I would work till I was 67 but there’s no way!! It’s a struggle with less income but it’s good to have the time to do everything I want without the stress. Now I have time to meet friends for lunch and go to the gym etc. just no way I could manage to work with the side effects.
Hope this helps xxx
So sorry to hear you are having such a difficult time and hope you find something that works for you. When I went back to work full time after a diagnosis of cancer fatigue and having also started Letrozole that worsened symptoms of menopause, my Oncologist intervened by writing a letter to my GP about needing my employers to support me as cancer falls under the disability act, it allowed me to go to my employers and negotiate getting more flexible working pattern for a month to enable me to ease back into work full-time. It would be worth contacting your Oncology team to see what support is available and what they can do to help.
I understand your dilemma, I had a job that I loved, but it was very demanding. I couldn’t see how adaptions could be made without taking away the bits I loved most. I was very lucky that I could afford to take early retirement so I made the difficult decision and left work.
It was the right decision for me. I’ve taken up pottery (I needed a challenge) I can’t claim to be good at it yet but it’s enormous fun and with the help of YouTube and Facebook I’m learning lots.
I thought I would miss work, but to my surprise I really haven’t. I’m living life at a slower pace, which works very well for me now.
Good luck with your decision.
Hello. So sorry you’re feeling like this. I’ve been in letrozole for nearly 3 years now. I don’t know if it’s because I’m used to the side effects or that they have eased off but they’re not a bad and are more manageable. Like someone else said, you’re covered by the disability act now so it’s definitely worth talking to work and working something out. Be honest and tell them what you need to be able to work. I saw occupational health and they were brilliant. They suggest work put in place things that I hadn’t even thought about. Hope you get back to work soon
Hi ive been on Letrozole for 18 months and have had side effects from the word go. Thinning hair, painful joints, itching skin and itching sores in a delicate place! I’ve had a flare up there and been sering a gynaecologist for this but they are stumped… seens bit coincidental that it started within a few weeks of taking the meds…but they dont listen! Ive done what a few contributors to this forum have done and i stopped taking it a week ago. Itching and sores have calmed down. Why are we not told about the many side effects that could occur. Our GP’s seem to be in the dark as much as we are.
That sounds awful for you.
Yes definitely on a learning journey with GP (she’s great) too. Trying to keep focused on the good that little tablet is doing but it’s hard as you well know, unpredictable and effects physical and mental health.
Have you only been on one brand of Letrozole? I have been taking Letrozole for just over a year now and the first brand (Sun Pharma) gave me very few (if any) side effects. When my pharmacist supplied a different brand (Accord) I had a dreadful time and had to stop taking it. I have tried 5 different brands now and none of them gave me such a bad time as Accord. Back on SunPharma now and all good. That’s a very long-winded way of saying see if you can try a different brand of Letrozole as that may help
I came to this forum looking for advice on Letrozole and discovered many women react differently to different brands - some love Accord for instance. Perhaps see if you can try a different one
Hello, yes on various different brands - started with Sun Pharma (great - then couldn’t get it) cannot remember what the next one was but I got very down (lifted within 2 days when I changed to Amarox). Been on Amarox now for 6 months, I would say side effects are worsening……good call- perhaps it’s time to change to another.
I had awful effects on Accord too
I’m on Novartis Femara. Remarkably different…
Hi Blondie,I taking Letrozoleand suffer brain fog which I put down to chemo after effects so this has,ace me change my mind, I get lots of cramps in my big toe joint
Hi, so sorry you are going through such a rough time. I was on Letrozole for about 6 months, not great but manageable, but then side effects became really difficult and I felt miserable. The oncologist changed it to Anastrozole, early days but I feel so much better. He said we could try other things if necessary in the future. Would it be worth just checking again if there is another option? Good luck x
The Letrozole side effects (including exasperation of depression) led me to stop taking it - only 2 or 3% difference in survival stats in my case so I decided not worth the poor quality of life.
My family have all cut off from me after a fallout with my daughter early in my cancer treatment (just before radiotherapy) & my angry reactions to cancer / my daughter walking away, so tbh, I don’t care if the cancer comes back now. Sad but true 
I am 68 I have letrozole to take after my operation and radiation therapy. Unfortunately it affects my eyes and cannot drive so I have stopped taking it.