Break from Letrozole

Hi everyone. I have been on letrozole for 2 years now and side effects seem to be getting worse (anxiety, depression, brain fog, bloating, constipation/diarrhoea, aches and pains). Just had review with surgeon and was offered the option of a 6 week break to see if things improve and if they do, change to another oestrogen inhibitor. Was told this wouldn’t increase my risk. Problem is I’m scared to stop taking it as I’ve read it’s the best one out there. Has anyone else taken a break?

Hi welcome to the forum . Yes lots of people  take breaks from hormone therapy in exactly the same circumstances . 6 weeks seems to be a safe amount of time that most doctors agree on . If your symptoms improve there are other options that may cause you less side effects and give you better quality of life .Don’t suffer this without looking at the alternatives as it sounds like your symptoms are debilitating x

Thank you so much for responding xxx. The rational part of me says you’re right and I trust what my surgeon says with my life - literally! I will contact the breast nurses and get more information and probably go ahead with the break as I can’t go on feeling like this. I spoke to my lovely (adult) son last night - poor  boy, he knows far more than he ever wanted to about breast cancer and has supported me throughout. He said much the same thing as you. Problem with cancer is it fills you with fear and for me, an inability to make decisions. I’ll continue posting on here about how I get on as it might help others. ?

Hi of course you don’t have to make it six weeks just please discuss . I would not be able to cope with anxiety levels of not taking it tbh despite creaky joints about to enter 5th year and on it for 10 . There is no ‘natural ‘ alternative which does the same job as AIs they took decades of research involving thousands of trials and despite it all  they work . Worth remembering many cancer medicines are derived from trees originally ie tamoxifen even if now produced synthetically . Good luck 

By alternatives I mean other AIs and Tamoxifen not herbs or diet .Please bear in mind that some peoples side effects are far more debilitating than “a bit creaky “.And this lady should be allowed to explore the options with her doctor without being terrified.

Find out what your % advantage is in taking hormone therapy. Then you can make an informed decision. After being led to believe by the surgeon and nurses that I really had no choice in the matter, I had a really good oncologist who really listened to my concerns re quality of life after BC surgery and radiotherapy, and he discussed recurrence risks with me carefully. When my details went into their computer programme to assess my likelihood of recurrence, radiotherapy took a 20% risk down to 4%. Then taking hormone therapy (Letrozole) would have only taken it down a further 2%. I considered that small percentage not worth the risk of all the possible side effects. Had I been at a higher risk not taking it, I would have tried it out. Also if I’d been younger I may have viewed it differently.  However, I’m 68 and quality of life is important - why compromise the active life I have left in order to finally stop the drugs when I’m knocking 80?!
So, now I have a 4% instead of a 2% chance of recurrence, (that’s 96% v 98% chance of no recurrence!) but absolutely no drug related aches/pains/sleep deprivation from hot flushes and/or worse (I’ve done menopause once already!) and my oncologist was very helpful/sympathetic and helped me make my decision. Just get all the facts and figures and risks personal to you, and carefully talk through them with your oncologist in order to come to your own decision.

I know of people who have stopped taking hormone therapy when the side effects have become debilitating and some who carry on with only mild effects so they manage them OK. It’s so personal, and (especially for older ladies, quality of life seems sometimes to get forgotten! 

Of course.  But taking a six week break is a big decision and frankly most of us more terrified of stopping the tablets 

Thank you so much for your good advice and route map for making a decision.  I too am older, 71 and have a potential further 8 years taking this. I want to live my life in the time I have left and not be constrained by feeling lousy all the time. It’s a dilemma! Hope all goes well for you. Xx 

The fear factor affects us all. I have recently joined  a virtual group run by the psychologist in my area dealing with living with uncertainty. Might be worth seeing if similar is available in your area. Xx

I had terrible depression and I am now taking sertraline for this, which seems to work pretty well. I no longer want a one way trip to Switzerland. I don’t know how long I need to take it for but maybe 10 years if I last that long on letrozole. My prognosis isn’t that great anyway.  With or without letrozole. Uncertainty is the name of the game, particularly with oestrogen positive cancer which recurs at the rate of 1% a year. In ten years that of people diagnosed today there will be 10% who have had a recurrence. By 20 years it’s 20%. That’s why I became one of the stats after 19 years. With grade 1 cancer and no lymph node involvement as my starting point, and treatment with surgery and radiotherapy. Predict model indicated I had an extremely low chance of recurrence at 5, 10 and 15 years. It predicted correctly except I got one at year 19!

I didn’t take tamoxifen as I wanted to put cancer behind me. Oh dear oh dear oh dear! But now at 67, (nearly 68) normal life expectancy is only 86 for a woman. So I probably only have twenty years left anyway. Most women die of either heart disease (letrozole can add to the risk of this) or Alzheimer’s (my mother got this by about 80). I come from a long lived family and in my opinion and my father’s, shortly before he died, we may be living too long now.

Not that he did anything to shorten his life, quite the reverse, no smoking, drinking or bad habits at all…


Hi @Crete you’ve done well sticking it out for 2 years.  Obviously we don’t know your histology or prognosis so it is wrong for anyone on this forum to urge you to take one course of action or another.  Your oncologist does know both of those things though so if he/she thinks a 6 week break will be ok, it will be ok.  “Living in abject fear isn’t living at all”.  That is a direct quote from my own oncologist when I was given a 6 week break from Letrozole and said I was very worried about secondaries.  In my case I was lucky to have a small Stage 1, Grade 1 IDC which, at 67, is likely to grow slowly, if indeed there is to be a recurrence at all.  It wasn’t even sent for the Oncotype test, which would suggest I needn’t worry too much about recurrence or spread but of course I do.  It’s not going to dominate my life though so I congratulate you on taking steps to deal with the fear and anxiety.  Lots of women have taken breaks, lots are too frightened to, some take breaks and find an alternative solution on their return to medication, some choose not to return at all.  It is a matter of discussion between you and your MDT.  But in answer to your original question, I think 6 weeks is quite standard as it can take 2-3 weeks to get the AI out of your system. 

I do so empathise with you! I’m quite alarmed at how many ladies seem expected to take HT with even really small recurrence risks. I suppose they just hope we’ll get by OK, and I see the logic in that, and perhaps a lot do. But when people are suffering and their lives are seriously adversely affected…? When we’re older and wanting to make the most of what’s left…? (And has all risk gone when we’re 80?? When our even bigger risk is just falling up the steps!!?) And sometimes people are suffering side effects that they don’t realise ARE side effects. Do doctors always pick up on them?
Perhaps the problem is that no one wants to take responsibility for allowing/suggesting someone could come off the medication?! We should though, always be allowed to make our own informed decisions.
I’m SO glad my husband was with me at my oncologist consultation, because when the radiologist and then a nurse expressed surprise at my not collecting my tablets I did start doubting myself and trying to remember what was said! Make sure you have someone with you at consultations, who really understands your position!

Good luck…I’d love to know how you get on…