Anyone here struggling with shortness of breath / breathing issues? I’ve been blaming it on my zometa infusion as it started a few days afterwards, but wondering if it’s actually letrozole which i had been taking for 6 weeks before the zometa. Had 2 MUGA heart scans (all good) and lung CT (slight scarring but ‘nothing to worry about’) so no explanation really. Been referred to respiratory team and have initial clinic appointment tomorrow but just trying to gather my thoughts!
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I have been on Letrozole for two and a half years and have never had breathing issues. But then I haven’t had the joint issues on Letrozole that lots of other women have had. The SE I had, which were vaginal dryness and brain fog, largely dissipated after around six months. It’s not really Letrozole per se that causes the problems but the eradication of oestrogen so it might be worth asking tomorrow how much oestrogen plays a part in lung function? Have never had zometa so couldn’t comment on that.
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Thanks tigress. Been on it six months now and thankfully no other side effects but will definitely query it tomorrow. So bad now that i’ve stopped going for a walk as it wasn’t enjoyable. Had plenty of side effects while undergoing chemo (6 trips to A&E and a 10 day inpatient stay) but they were mainly temp up to 40 and heart rate 140-150, but again nothing found.
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I’m very sorry to hear that. Walking is a good and controllable form of exercise so it’s a shame that it has become untenable for you. I do hope that you get some answers, if not tomorrow, then in the near future following appropriate tests.
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Hello there I’m so sorry to hear that you are having these problems and I hope you get some improvement in your symptoms soon. Just wondering if you had radiotherapy - I think it’s fairly rare but I’ve seen a couple of posts from people with asthma that has been exacerbated by radiotherapy. Also it’s possible to develop mature onset asthma - I was diagnosed with this at 50 but hopefully the respiratory team will be able to help you and I hope your appointment goes well. Xx
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Thanks Joanne, yes, a week of radiotherapy. i have had very mild asthma symptoms for several years and had an inhaler to use if needed, but this was changed to a combined one (including steroids) recently to try and help the breathing. It didn’t - and gave me oral thrush! Hoping the respiratory team can come up with some answers later.
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The first time I went on my steroid inhaler I also got oral thrush and I now have a spacer to use with it. I also gargle with and drink water after taking the inhaler. A few years ago I had a really persistent cough and the advice was to double the dose of the steroid inhaler which again resulted in oral thrush despite drinking water cleaning my teeth after use etc. - most unpleasant .
Fingers crossed for you for today .xx
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I have asthma and had radiotherapy on both sides. Since having Covid my asthma was hard to control and need more than the dose prescribed just to function without breathing problems.
The combined inhalers are in the process of being prescribed to all now as the long acting bronchilators and steroids have been found to work better at exacerbation/ attack than using Salbutamol/ventolin. I was always told to rinse my mouth after using the inhaler to stop thrush and hoarse throat, an ENT doctor said it should be salt water. It does help. I used to have a spacer like @JoanneN but my inhaler was changed due to reducing pollution from inhalers to a dry powder, which I had trouble with in the past. (Sore throats, hoarse voice and thrush, so far salt water has helped)
I hope you get some answers from the respiratory team.
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Good tip about the salt water in case they change mine. I’m usually stable on the steroid one - only need to use the Salbutamol when I’ve got a cold / cough or sometimes in Winter the cold seems to set me off. I mentioned the pollution aspect at my review last year but the Nurse didn’t seem to think it was an issue though I’m sure it will be at some point . I’m a bit worried about the idea of changing something that works really well xx
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Cheers naughty_boob, it does look like it’s the asthma (maybe increased issues because of cancer treatments leaving my immune system wrecked?). Spiro and other tests done this morning, and now on new inhaler (Fostair) with spacer. Lung CT and repeated spiro tests shortly. And a referral to thoracic medicine. Can’t say they are not looking after me, so very grateful to all my doctors and associated staff.
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Hi deidre784,
Sorry that you have been suffering with breathlessness and that you were wondering if it may be caused by Letrozole.
I’ve been on it for a year, and whilst I’ve always been ‘chesty’, even since childhood, my chest is definitely worse now. Last Autumn I had 2 bad chest infections and it was quite scary as I couldn’t breathe. My GP
hit it with nebulisers, steroids and antibiotics and said I should really be in hospital. It persisted and I’ve been on an asthma inhaler for a while and I’m so much better. GP said this is almost certainly adult asthma.
I had worries about mets to my lungs but thankfully a thorax CT scan was clear. I’m glad yours was too. I’m now pretty convinced that Letrozole has made my chest worse. I’m okay though and this blip certainly won’t stop me from taking it every day. There are side affects when taking Letrozole, unless you’re very lucky, but my own feelings about this are that it’s definitely worth pursuing the course. A recurrence of BC is a scary prospect.
Good luck
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Thanks Frances, hoping this new inhaler will help. Glad to hear your GP was on top of things for you.
have been prescribed letrozole following breast cancer and surgery which has removed all the cancer and have heard that supressing oestrogen can affect the brain which then you can be affected by dementia. Has anyone got information on this recent research?
Hi @bdrumf I asked the head oncolgist of my health authority this and she said that there is no evidence of aromatase inhibitors causing cognitive decline. I asked for the research programmes that came to this conclusion as, as a retired lawyer, I always want to to go back to prime documentation. Alas, there are no specific studies to date on this topic, according to her. I gave Letrozole three years but felt that the brain fog, low mood and general cognitive impairment wasn’t worth continuing and she agreed BUT this is because a) I had radiotherapy b) according to Predict, I am estimated to have a 72% chance of still being alive after 15 years but the impact of endocrine treatment on that is 0.9% c) I’d had clear margins, no lymph involvement or LVI and d) I am 70 years old. Dementia is rife in my family so I have experienced it several times very close up and, should that be in my future, I have no children to take decisions for me so my oncologist understood my viewpoint and agreed that I could stop. I am certainly not encouraging you to refuse Letrozole, in fact, I am in favour of everyone at least trying it for six months to see if they have side effects as many, if not most, do not. I don’t know if I’ve done the right thing as I don’t actually know that reduction in oestrogen is a contributing factor to dementia and I accept that if I get a recurrence, I may well have to go back on to endocrine treatment but, for now, I’m willing to take the risk. If you do find legitimate and recent research results on appropriate research, please let me know as I’d like to read it.
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thanks so much for your reply, I too will be 70 next month and have my mother and 4 of her siblings suffer from dementia. I had just been given the all clear from breast cancer and prescribed letrozole, before starting it I saw a news item on BBC1 news 27/1/26 saying menopause(lack of female hormones) is linked to brain changes similar those seen in Alzheimers. While they don’t fully understand this to be the case, I read into it that suppressing my oestrogen levels by taking letrozole may increase my chances of developing dementia sooner rather than later.
I realise that no-one can predict me developing dementia nor indeed getting breast cancer again but I’m really unsure about whether or not to take letrozole.
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Hi bdrumf, very interesting. I’ve been on letrozole for 15 months now and have had a number of side effects likely to have been caused by it (no-one can guarantee it’s the cause). Side effects from each brand appear to vary hugely from person to person and getting a brand which seems to suit you can be difficult to obtain regularly. One of my side effects is brain fog, struggling to find the word I’m looking for, mixing up the first letter of 2 words (eg par cark) etc. Though again, whether caused by letrozole or simply age (i’m 66) is anyone’s guess. Hope you find some info to help, good luck 
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Yes, this is the issue, isn’t it? We don’t know whether we’ll get a cancer recurrence with or without Letrozole and we don’t know if we’ll develop dementia with or without treatment for other diseases. The women in my family who have lived with and died from dementia, including my mother, all had vascular dementia generally developed after mild strokes/TIAs so maybe reduction in oestrogen would not impact non-Alzheimer’s dementia. None of this is known or researchable, we’ll only know when we die I guess. Sorry for being so blunt and downbeat! I must say my brain function is better having stopped Letrozole but I don’t think I’ll ever be back to the mental acuity I had before. Good luck with deciding what to do. If you have a meaningful discussion with your oncologist about it, I’d love to know what was said.
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I’m due another infusion of zoledronic acid at the end of next month so will probably get a call from one of the team about 2 weeks before it. Or after bloods in case i need to defer. Will try and remember to ask 
I’m was 54 at diagnosis and had been on HRT from 47due to mood, hot flushes and brain fog. I was teaching across a primary school and standing in front of 30 11 year olds and forgetting what you want to say or losing your thread is horrendous. HRT helped for 7 years then I got breast cancer and stopped.
I had chemo with Herceptin and that can affect brain function as it affect the good and the bad cells. I’ve been on aromatase inhibitors for 2 years, 16 months on Letrozole and 8 months on Exemestane. I have slightly less joint ache on the later but the hot flushes/heat surges, mood, brain fog including mixing up words or being able to describe something but not name it, are all worse than my natural peri/menopause. I am talking to a menopause specialist to try and manage these but it’s slow progress on the NHS.
Brain decline is common as we age and I think we just have to try and keep our brains active, the same as our body. If we don’t use it we’ll loose it.
I also changed a different brands on Letrozole and that affected the side effects, some on another thread have asked their GP or pharmacist to supply a specific brand but it’s not always available. You could ask about changing to Anastrozole, Exemestane or Tamoxifen if they a suitable for you.
i have similar issues & it is due to the oestrogen making inflammation worse which leads to excacerbation of asthma xx
I’ m waitinf to see if I can go on Tamoxifen instead