Hello. I am shortly to begin radiotherapy then follow up with 5yrs letrozole. After reading up about letrozole am now feeling reluctant to take it . I know I should because my tumours were 8/8 oestrogen and progesterone positive and it’s the sensible thing to do. Has anyone on this forum had a positive tale to tell about letrozole please ? Has anyone experienced no side effects at all. I would be very grateful to hear from you as it will impact my decision a lot. I think I naively thought that now the cancer has been removed I can put it behind me and move forwards, it doesn’t seem like that’s the case especially if letrozole side effects are a big problem. Many thanks in advance and good luck to all of you trying to recover and move on .
Hi
I started letrozole in April at first I found it hard was taking the tab in the morning and struggling. I changed to evening and that has helped a lot.
Over the months I have been on it my body has become accustomed to it - true it has slowed down my hair growth (which I do find difficult to accept) and when I get hot my skin itches and prickles like little hot pins being stuck in - but it passes very quickly. I do get the old hot flush but these have also settled down.
I do worry and ask questions about the drug, especially over the bone-thinning problems at 64 this is something that concerns me - but for me, it all had to be weighed against cancer returning (it could well do) but I would hate to think it was because I refused a drug - right or wrong - who knows.
I do not think there is a definitive answer we are all so different in how we cope with ALL the treatment, not just letrozole.
All you can do is go with what works best for you talk it over with your team (if able) mine were not very forthcoming with help/support over hormone medication - it was more a ‘here is your prescription’ start it ASAP .
If you are asking has this medication made MY life unbearable - then NO it has not, somedays are not as good as others, but I also think/feel that is an accumulation of all my treatment, chemo, surgery and rads plus at 64 the body takes longer to heal.
I wish you lots of good wishes in your decision it is a hard one to call one in which only we can decide.
Hugs and more hugs
Poppy xx
I was diagnosed with breast cancer in May of this year, followed by mastectomy and SNB two weeks later. I was started on Letrozole at diagnosis. So, I can’t comment on the effects of Letrozole longterm
When I saw my oncologist and discussed the way forward. He (and I) agreed that radiotherapy was right for me. I declined chemotherapy and he was fine with this. So my adjuvant treatment is to have 15 sessions of radiotherapy (to start next week), continue with the Letrozole for five years, and have six monthly infusions of Zoladronic acid which is intended to reduce the amount of calcium that is lost from the bones (which the Letrozole can cause) and help calcium levels in the blood return to normal. Of this approach, he said that the Letrozole may be of most benefit to me. I’ve had a bone density scan, and I take calcium and Vitamin D each day.
I feel good and the effects of the Letrozole for me are a bit like having a second much much milder menopause. So far, I do not have any additional aches and pains other than those I can get at my age (71) sometimes.
My story is a positive one and my oncologist was very happy to explain the benefits to me. Please speak again to your oncologist and get him to explain the benefits and implications to you. Age may be a factor in deciding on beneficial Letrozole treatment.
Hope the radiotherapy goes goes well.
Hi Sculptor1,
Your diagnosis and treatment sounds similar to mine - am a couple of years plus further down the road than you are now. I was very thankful not to need chemo, am not sure how I would have coped with that.
Just to say, I haven’t had any side effects to letrozole at all - no joint pains etc. I need to take a bone strengthening tablet weekly (alendrotnic acid) and daily calcium/vit d supplement. This is because I was diagnosed with osteoporosis and osteopenia (low bone density) a few months after starting the letrozole. Bone density scans are recommended at the beginning of taking letrozole and every two years after when on letrozole. My bones are getting stronger now and no side effects to that medication either. My GP referred me as the hospital hadn’t mentioned it. Bone density scans are not scary at all, so don’t worry about that either. It’s all a lot to take in - going from being healthy and then having to get through all this longer term treatment.
Hoping your radiotherapy goes well. I had 15 sessions, which seemed never-ending, but you will get through them. I think that a lot of centres have condensed the number to 5. I had a mild skin reaction (Aveeno cream was good) and fatigue which lasted a couple of months, so rest and don’t overdo it. I did find it all quite weird and surreal. Then all of a sudden, the heavy duty treatment is finished and it can leave you feeling at a bit of loss. Do continue to take good care of yourself if you feel like this - it takes a while to recover both physically and emotionally.
Sandiper
x
Hi there,
My view is you won’t know how well you’ll tolerate it until you start taking it! I heard a lot about side-effects ie joint pain etc before I commenced treatment and I can say, after 5-years I never experienced this or many others I’ve read about, for that matter. My hair/eyebrown have gotton thinner but this has been a very gradual process. However, I think this is small price to pay - I would feel much, much worse if I had a recurrence. So al things considered, I would say I tolerated it very well. PS Like you I scored 8/8 oestrogen +. Also started on Accord brand but have periodically had others when it’s not available. The pharmacist once explained once that this one is more expensive than the others and they don’t always have it supplied to them.
Good luck with whatever you decide!
Hi Sculptor1
Sorry to hear you have had a bad time - the whole process is so scary and indeed I am beginning to realise it is a new life I am to lead, a bit different from the one before diagnosis.
I started on Letrozole about four weeks ago. I suffer from Fibromyalgia so I am very concerned about joint aches and pains increasing. My GP said regardless of side effects I must take the drug which is a bit scary.
So far I can honestly say I have not really had any side effects at all. I know it is very early days and I think it will take a while to accumulate enough to cause any issues - but so far so good. I can keep in touch as I go forward to let you know if my situation changes. Please let it stay as it is now as I can cope at least with this - although struggling with lots of niggles from the extensive surgery - but that is another story!
I have been taking letrozole Cipla brand for 2 weeks now and no side effects so far. It may be a bit early but any serious effects happen quickly so I believe. Like you I needed to hear positive comments as I was very worried about taking it.
I would say give it a try not all have the awful side effects.
Good luck x
Hello,
I’m taking Letrozole, only for two weeks yet but haven’t experienced the really bad side effects. My hot flushes have been worse, more sweaty but not more frequent. After 3 months I have a review. Remember you can go back to the oncologist at any time if you find side effects too bad.
I hope this helps 
Hi, I’m 7 weeks in on Letrozole (Femara brand). I’ve been doing fine apart from the last couple of weeks a bit of insomnia has kicked in (not every night) that I hope will settle down. I think I’m getting the odd mood swing too as I’ve had a couple of ‘dips’…but that could be the after effects of everything that’s happened…diagnosis, op, & onwards!
I suffer with vaginal atrophy and had just started HRT (patches) a month before my cancer was picked up on a routine mammogram. Previous to HRT I had been on topical estrogen treatment which wasn’t doing much to help so was trialling a course of patches which I have to say only after a month I was feeling the benefit of but hey ho, that’s out the window now. I am now using YES VM but it’s not the same. I believe topical estrogens & testosterone can be used in some BC patients on Letrozole which is something I will investigate along the line.
My hair was already thinning, started a couple of years ago, which was already causing me distress so I’m hoping it won’t get worse…I am browsing wigs online already though!
I have started a non-inflammatory diet (my diet was quite healthy before but have tweaked it) & have lost a stone in weight (probably a combination of tweaked diet & cancer fear!) I do feel healthier though, the small changes have made a difference.
Lack of exercise is my main bugbear at the moment, combination of weather & apathy!
Thanks for starting this thread, best wishes to all