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 chemo-first treatment plan for a much more serious breast cancer. This new 1.3cm primary was minor in comparison.
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 working 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 of the drug 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.
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 entirely 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 this. 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!
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