@Frances55 I agree with you 100% and am not really sure what’s going on with this forum. It’s supposed to be a safe space for everyone and all of sudden it feels like it’s not anymore. Am I the only one thinking everyone is different and can do as they please as long as there is no posting of misinformation and we stick to the science…
I was on Abemaciclib and Letrozole combo for 2 years because it’s proven that it’s working. If you can’t tolerate AI there is always Tamoxifen…there are so many new treatments available and we should feel lucky that it’s 2025 and not 1995…I honestly don’t understand are we adults or children who beaker about trivial things at school? Lives are at stake here and we shouldn’t be dismissing the advice of the medical professionals…
I am really sad that what started out to be a simple request for a bit of solidarity and support has ended up in a discussion that has upset and offended you. I’m very grateful to Frances for saying that with hindsight “wimp out” does come over as being flippant. Takes a good person to say that.
Really hope you are ok. Please send me a private message if you want to talk outside this chat - at any time and about anything. Xx
Interestingly I’ve just found another thread on the forum where the first writer is questioning whether they want to take hormone blockers and has received a variety of advice either saying yes to taking it because…or no to taking it because… It has sparked a very similar debate to this one but nobody has said it shouldn’t be out there being discussed. Some of the participants have responded on here too. The debate is exactly the same.
mun4o. Yes I agree with you about dismissing advice from medical professionals who are experts in their field. I also firmly believe it’s so important to advocate for ourselves but I read on here that someone stopped hormone therapy after 6 weeks. Very surprising. I wanted to reiterate that things can and do settle down in time. It seems our opinions have offended. I get it about my ill chosen comments about ‘wimping out’ and I’ve apologised. We know our own bodies of course and have free choice but to dismiss advice of medical professionals seems reckless. I’m full of sympathy for anyone struggling but many people do tolerate hormone therapy well and things can and do settle. I know I was pretty scared about moving on from Tamoxifen to Letrozole as I’d read so much negativity. That doesn’t give perspective and isn’t always helpful.
It’s human nature to reach out for support after a bad experience isn’t it, but that isn’t everyone’s experience. I’ve read on here quite often about people choosing to stop treatment prescribed by oncologists. It concerns me that others may follow suit thinking it’s the norm. We’re not Drs are
we!
@Frances55@Susanmanchester
It was me that had to stop after 6 weeks. As I mentioned before I was feeling suicidal on the medicine. If I had carried on I don’t know what would have happened. Sure I can’t know what my decision will mean for me in 5 years time but I know what it could have led to now if I hadn’t stopped them and, as Frances previously acknowledged, I have been through so much and am still having to cope with other side effects.
My decision was made after a very long discussion with my oncologist where we looked at all my options and all the stats and took into account my pre existing medical conditions as well. I didnt make my decision without consulting her and in fact she was very supportive of it when we discussed it at length and I certainly didn’t do it because I was being some sort of rebel! I did that in my teens and I’m over it now. I have certainly never advocated given up hormone therapy if you are one of the lucky ones who are able to take it. I merely asked for support from other people like me who can’t take it and who have therefore tried to find ways to help them live as well as possible in other ways eg diet, exercise, relaxation etc.
A lot of people have other underlying health conditions which make taking it very risky for them. I fall somewhere in the middle - one of my health conditions gives me quite a high risk of having a life limiting side effect from the AIs and the bone infusions I would have to have if I had carried on with them. Despite all this I did give it a go.
Yes of course meds can save lives but they can also make them not worth living for some people and we need to acknowledge that and be kind to each other and respect that for some people it’s the only decision they can go for.
Thank you - yeah I’m on a bit of a short fuse at present .Both my parents died in April in 2021 and 2023 respectively and I find Mothers Day a bit tough . More annoyed than upset - tend to overreact. There are some threads on this forum that are locked and you have to apply to join it . Maybe that’s the answer here then only people who have made a decision to stop permanently could access it. Xx
Hi Naughty Boob, I’m on your side of the bridge too Now then, I stopped Letrazole (crippler) after just one year. That was 6 years ago, and then I got moving again and active and enjoying things I used to, kayaking, sailing and dare I even say it skiing. It took me 3 months of being on the crippler to end up being on crutches and after stopping I moved swiftly to just a cane, and then quite quickly to walking normally. This for me as a single mum with a then 9 year old clearly had its benefits for each of us. Now, I have metasis to my spine: diagnosed last month. Do I regret stopping the letrazole. Not one iota. I have muscle strength and fitness, lots of great memories of being cancer free for for 7 years, and ready to have my fair share of some words with cancer before it wins its own selfish nasty argument. I have a friend who suffers very little from the drug, but it was all to visible how my own overall health improved by stopping. It’s such an individual choice. It was however with great anguish I stopped taking it at the time… But the joy and relief was well spent. And potentially puts me in a better place to face the challenges now ahead. Hope my story helps.
Thank you for sharing that with us. I am so glad that your decision allowed you to live well for so many years. It’s so important that we have the choice to do that.
Sending you a huge hug and wishing you all the best x
I’m sorry this is a difficult time for you. I hope you will get through the weekend ok. I understand about events triggering the sense of loss. I hope you can do something to be kind to yourself.
I will look into the idea of a closed thread.
Hi jayesse,
I think a closed thread on this subject is a good idea. The term breast cancer covers many variants of the disease. Some may have a small cancer which is low grade and stoping hormone therapy may not have as many risks as those who stop with high risk features.
The concern I have is that some women may read about stopping hormone therapy who are not as educated about their personal risk of developing secondary breast cancer. It could normalise stopping AI if you are finding the treatment too difficult without a full understanding of the risks.
I fully respect a woman’s choice and I agree women who stop hormone therapy should benefit from the support that this forum provides but I wouldn’t want this forum to appear that it is going against a treatment that has been advocated by a oncologist.
Got ER+ breast cancer? Then take hormone blockers? Seems simple, and so it’s a mantra that is so imbeded as a blanket treatment that everybody is told to take it. I don’t have an issue with that, but much as our cancers are highly individual, our side-effects are too. Great if your side-effects are small, tollerable, etc, but if they are not - as is the case for plenty of women ( I doubt its as rare as is claimed) then a reasonable chat about risk/benefit is the least that should be done.
Predict comes out for me as 0.8-1.5% benefit with an average of 1.2%. I’ll now set that against side-effects I 100% had:
Hot flushes - in xs of 6x nightly, so no sleep.
Nausea an hour after taking that lasts hours
Dizziness.
Brain fog - a real slowing down of thought processes.
Tiredness
Sore throat - that wore off after a few weeks tbf.
Depression-like a cloud coming over, didn’t feel like me anymore.
Dry eyes -making it impossible to wear contact lenses.
No surprise that for about a 1% benefit, I was not up for 5 years of living like somebody else. Not being able to do my job due to brain effects. 5 years of a ruined life is a big chunk when there are less of them left as it is as we age.
I couldn’t do as much as I do now at the gym. I still went, more often actually as I was off work at the time so could fit it in. But the running was harder and sweattier, and just walking my dog made me feel dizzy and worn out. I didn’t have chemo, so it wasn’t that either.
Predict also gives about 5% of deaths from unrelated causes, most of which could probably be put down to lifestyle factors. So if my lifestyle is far better without tamoxifen, that’s quite possibly a thing to control to make a bigger improvement of risk, than tamoxifen ever could?
Its hard to know where to go with risk, I’ve seen that Liz’O Riordan has claimed it could be 20-30% reduction in recurance risk from regular exercise, though she’s a triathlete, and clearly has exercised far more than most people throughouther life, yet had recurrance twice now - maybe, if she hadn’t, she’d be metastatic by now or dead, who knows? She had a high risk cancer to start with, as many do, and if you have a high risk of recurance, but still find that the misery AI’s and tamoxifen brings you, makes you want to stop them, so be it, its your choice to take that risk, especially when you have found that your risk of your life being affected majorly, for years, was 100%.
Hi Jayesse, just realised you were the original poster, so I was thinking of you when I wrote. Oops. And only just read through the posts worried about this subject being discussed on the forum. I think it’s so important we all do and can share our difficulties with treatments. A problem shared is a problem aired and it is that way we may all prioritise our thoughts and decision making processes, and have a degree of self advocacy as the key player in our health. Keep strong
Now then, I stopped Letrazole (crippler) after just one year. That was 6 years ago, and then I got moving again and active and enjoying things I used to, kayaking, sailing and dare I even say it skiing. It took me 3 months of being on the crippler to end up being on crutches and after stopping I moved swiftly to just a cane, and then quite quickly to walking normally. This for me as a single mum with a then 9 year old clearly had its benefits for each of us. Now, I have metasis to my spine: diagnosed last month. Do I regret stopping the letrazole. Not one iota. I have muscle strength and fitness, lots of great memories of being cancer free for for 7 years, and ready to have my fair share of some words with cancer before it wins its own selfish nasty argument. I have a friend who suffers very little from the drug, but it was all to visible how my own overall health improved by stopping. It’s such an individual choice. It was however with great anguish I stopped taking it at the time… But the joy and relief was well spent. And potentially puts me in a better place to face the challenges now ahead. Hope my story helps.
