Let’s talk about Letrozole: it’s messing with my beauty sleep

Being told I’d only need to swallow a tiny pill called Letrozole once a day for five years after a mastectomy saw me leave the consultant’s office literally punching the air. The fact that I wouldn’t have to subject my body to radiotherapy or chemotherapy filled me with more than a sense of relief. Almost five years before, I hadn’t been so lucky. I’d endured a 16-month chemo-first treatment plan for a much more serious breast cancer. This new 1.3cm primary was minor in comparison. 

Letrozole tablets

Phew! That was my line of thought.

I wasn’t even bothered by the scare stories when I popped my first Letrozole tablet. I knew about the risks - osteoporosis, thinning hair, hot flushes, a raised risk of a stroke, the potential for a heart event, pain… They didn’t bother me. In fact, when the first prescription was written up, right after I’d been told the cancer had not spread to the lymph nodes, all I could think about was getting home and sharing the good news with my family. I didn’t want to hear about the side effects or get myself booked in for a bone density scan. They were ‘nothing’ in the grand scheme of things.

Having tolerated TCHP chemotherapy for six rounds, I thought popping a simple pill would be a doddle. I was wrong. 

Letrozole bone pain

The bone pain kicked in within days of starting the drug. I found walking to and from work really hard, but thought a change of brand may help. Generic Letrozole is produced by many different pharmaceutical companies, apparently at very little cost to the NHS. We're talking in pennies. The original Letrozole, which is sold under the brand name Femara, is, by contrast, much, much more expensive. Hence, it is now rarely prescribed.

Before switching to a different brand, I read everything I could about the side effects and how things like binders, fillers and even pill coatings can make a difference. I discovered that reactions are very individual and a brand that may not suit one person could be another’s preferred treatment. There seemed to be no rhyme or reason to what worked best for who.

I was quite hopeful when I started taking a different brand two months into my treatment. In fact, all the early signs were positive. No more bone pain! But then I realised I hadn’t slept for more than three hours a night for weeks and developed a sore throat. That quickly morphed into Covid and over a month of general poor health. Sure, Covid could be to blame for everything but I wasn’t convinced. Overall, I felt like crap. In fact, I still feel like shit right now. I feel ill.

This isn't me, but it's how I feel - very old!

Trying yet another brand of cancer drug

To try and get myself back on an even keel, I stopped taking Letrozole; something I know my oncology team would not be happy about. This is a drug that suppresses oestrogen production and can significantly reduce the chances of a hormone positive breast cancer from coming back. Trust me, I want to take it. But, before I try a third brand (the prescription is in!) I need to get myself well again.

Poring over comments from other women on this drug - and there are some who have no side effects at all, by the way - I’ve realised something…. The fear of cancer returning makes those who can't tolerate Letrozole, including me, continue to take it. Even though it can seriously mess with your quality of life. One comment sticks in my mind: Boy, the pharmaceutical companies really failed with this one! Of course, that’s not true. The drug is a wonder pill - it has transformed cancer treatment for millions and, undoubtedly, saved countless lives. But it’s being dished out left, right and centre with pretty much zero backup - apart from an individual’s choice to try another brand or switch to a different type of aromatase inhibitor.

Because Letrozole isn’t chemo, there is very little chance of a successful PIP claim for its effects, even though they can be debilitating. That means, thousands are literally suffering in silence; plodding on with life in pain and feeling ill. I think there needs to be a wider conversation about what breast cancer survivors are secretly enduring because of this drug. Many are forced to take additional drugs to counteract the side effects of Letrozole. I am going to need sleeping pills, for a start!

Let's talk about Letrozole

We need to talk about Letrozole and how it impacts us as individuals. I’d like to see greater follow-up, so women don’t feel they’ve just been written up a prescription and told to simply ‘get on with it’. 

It’s not just feeling awful I don’t like. It’s the thought of yet more hair falling out, wrinkles getting worse and, generally, not feeling like myself. Of course, I am beyond grateful to be alive but life, at the moment, is pretty tough. I’m not sure I can cope with the thought of another five years living like this.

Yes, I am going to re-start taking the tablet - because I’ve been told I should. That makes me scared. Who knows what side effects I will suffer next! Let’s hope I get some beauty sleep in the meantime. 

Something I have found useful is this video by Dr Liz Riordan, who is a breast cancer survivor.

What are your experiences with Letrozole? I’d love to know.

UPDATE: I moved onto the Crescent brand. It's day 6 and... so far, so good. I've also read some pretty horrific stories about women who chose not to take Letrozole, or who took it inconsistently, and suffered recurrences. They may have gone on to develop cancer again even with Letrozole, but they may not have. I am not going to risk it!

FURTHER UPDATE: I've now been on Letrozole approaching six months. I've had Covid, a chest infection, the 'flu and, more recently, a heavy, two-week cold. If you look online, there are varying answers to the question: "Does Letrozole impair the immune system?" We need a definitive answer. Come on, oncologists, you are prescribing this drug like Smarties. Tell us the truth - does it impair the immune system or not? It's confusing.

Other side effects I experienced in the beginning have reduced. It is tolerable. My last request for 'Crescent brand', however, was ignored. I'm hoping the prescription I pick up later this week will be for Crescent. That's the brand that suits me. Without it, the original symptoms creep back in but they are not quite as intense as when I first started to take the drug. I guess, it's all about keeping up the pill-taking and waiting for the body to adjust.

I'm currently sleeping a maximum of five hours per night. Hopefully, this will further improve in the near future. I haven't yet asked for anything to help, but will if it continues.

ADDITIONAL UPDATE: It's now April 18, 2025 - In spite of my prescription stating 'Crescent brand', I have not been able to get it again. When my daughter went to collect my most recent batch of Letrozole, the pharmacy told her they didn't have it and that I would have to 'go elsewhere' from now on as they 'can't do it'. I live in a rural area and now have to travel 12 miles each way by bus to a larger pharmacy. The new pharmacy also didn't have Crescent when I went to collect my prescription. However, they did have Accord - a brand I've not previously had but read good things about. I'm only two days in so can't comment on side effects.

However, I have noticed, over the past month, that my mood is very low. For the past three years, I've had a little part-time job - and on Tuesday I quit. I'm finding life after cancer really tough and, whichever way I turn, I can't find the support I'm looking for. Hopefully, my next update will be more upbeat.

FURTHER UPDATE: It's now July, 2025. Accord was no good for me. On Monday, I showed myself up in Boots, Bridport - after opening my prescription bag at the counter and finding yet another packet of Accord. The previous month, I'd been given Cipla which I tolerated fairly well. I was faced with unhelpful, uncaring staff who imparted a 'take it or leave it' attitude. I wanted to scream and throw the tablets on the floor. I've hit boiling point - and reached out to my MP.

Women taking Letrozole and remaining disease free as a result are saving the NHS money. Yet, how many are dutifully collecting their Letrozole every month and then stuffing it into the back of a drawer because they can't live with the side effects? I want pharmacies to be compelled - by law - to change the way they buy and distribute Letrozole so that more women stay disease free - and the NHS saves money. Will you join me in my fight? Please write to your MP and quote West Dorset MP, Edward Morello.

I will take Letrozole, but I need support to be able to tolerate it.

Are you with me?

YET ANOTHER UPDATE!

This is me, with mean eyes, gearing up for my monthly face-off with staff on the prescription counter at Boots. I've had a maximum of 3 hours sleep a night for all but 28 days since January, my kneecaps feel like they are going to pop and my mood is so low I could almost commit murder. Upshot? When I opened this month's Letrozole prescription at the counter and found, yet again, that it was not one I can tolerate (Accord), I had the over-assertiveness needed to hand it - and all the other drugs that came with it - back and ask for it to be 'put back on the system'.

I'm not sorry they've wasted labels that will have to be peeled off or covered over!

Trawled around for 3,000 steps and, FINALLY, got Crescent brand for the first time since January (I can also tolerate Cipla brand, which I managed to get around 3 months ago). I celebrated my one-off win with a cheese burger & chips at Spoons!

EVEN MORE BAD NEWS: Between last Wednesday and Sunday, I slept for a grand total of... 0 hours!!! I was so strung out, my brain was all over the place. My thinking was skewed. My perceptions were off. Upshot? I aired my dirty laundry on Facebook in a spontaneous rant. I hurt people. I hurt myself. How bloody awful.

I could have lost the people I love - and they wouldn't have understood if I'd tried to explain. You have to be taking Letrozole to know what it does to your mind as well as your body.

So, I've finally bitten the bullet and asked the doctor for some sleeping tablets. I've tried to manage without them but can't. Of course, I can't have 'real' sleeping tablets. Apparently, they aren't prescribed any more because 'they are addictive'. I was told I could have some antihistamines instead. 1. I may not live long enough to get addicted (due to my first breast cancer which was advanced, inflammatory and HER2+) and 2. Antihistamines make me feel very sleepy the day after - and I work.

NEW UPDATE: Unfortunately, my efforts via the Parliamentary route seem pretty much dashed. The response from Dr Zubir Ahmed, Parliamentary Under-Secretary for Health Innovation and Safety, was that pharmacies are private businesses and each has its own suppliers, etc. This means my health is not in the hands of the NHS but the private sector. I want to spit.

My MP's suggestion? To show the pharmacy this paragraph (below) from the response letter - in the hope they will actually supply the Letrozole written on my prescription.

Do you know what I think? Fat chance!

The upshot of this is that I'm 99.9% decided to stop taking Letrozole. There comes a point when you just can't fight any more.

UPDATE: It's now March 2026. I've managed to get Cipla for the past two months but, of course, it wasn't straightforward. There's no guarantee I will get it again next month. I've recently completed the PREDICT questionnaire which can help determine how beneficial an aromatase inhibitor will be for those who have had a diagnosis of ER+ breast cancer. Mine was stage one, not in the lymph nodes, well under 2cm and I chose to have a non-skin sparing mastectomy to match the other side. The benefit to me? 0.76% over 10 years. Not even 1%!!!! Why have I been told I 'must' take it?