Minimal benefit from Letrozole

I have seen the figure of 30% on (I think) on Breast cancer statistics | Cancer Research UK but have recently heard Dr Liz O’Riordan quote it on one of her YouTube videos.

Whatever the actual ratio, and I doubt anyone really knows, it seems to be more than previously calculated https://news.liverpool.ac.uk/2022/12/22/new-findings-show-scale-of-secondary-breast-cancer-in-england/amp/

Make sure you look down the road to 10 years and 15 years with endocrine therapy when you go to predict. I get only 6.7% at 10 years but 11.1% benefit at 15 even though I’m only on it for 10 years. It benefits you more later the longer you stay on it. That’s the thing with hormone positive breast cancer. Our chances of recurrences actually go up more the longer we go. That’s quite unlike other cancers and even other breast cancers. So yeah you may not get much of a benefit now to endocrine therapy. But 15 years down the road that can stack up to make the pain of it now well worth it.

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I will say, Laney, that I do a lot of reading and this is one of three breast cancer sites I do that on. It’s a curious habit of mine that when someone comes on with secondaries I’ll look up their search history to see if they’ve documented what their treatment protocol has been. I’m looking for general patterns that way. This is purely anecdotal but one pattern I’ve noticed is far too many it seem appear to have not taken their endocrine therapy as recommended. The other patterns appear to be lymph node metastasis, higher grades, etc. But the endocrine therapy really stuck out to me. But take that with a grain of salt obviously since I’m not even remotely in the medical field. It has made me determined, however, to stay on mine for as long as they let me. Also this doesn’t mean that those with stage 4 are even remotely responsible for their progression. We all do the best we can with what we have and some people can’t tolerate endocrine therapy and who knows if it would have made a difference anyway. It’s a shame there’s nothing better than that right now that we can offer people. But regardless it is a pattern and it’s worth noting.

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Those rising figures IMO, Tigress, actually support the strides we’ve made in treatment. More women are living with MBC, treating it like a chronic disease, instead of dying from it immediately. That’s a great thing. But we need to do better. All of us have the potential to be there one day and I’d like to see a cure and more money and research going there instead of things for early breast cancer.

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Thank you @Kay0987 great information

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I think we would all like to know this but despite a fair bit of research, I haven’t found much that is reliable. As you say, it may not be considered ethical to put people on placebos during trials. Who knows?
I think we all need to accept that in the grand scheme of things, treatment is still in its infancy. I came to the conclusion that the best thing I could do was educate myself as much as possible and then make a reasonably informed decision - in my case NOT to take Letrozole or anything similar. The best we can hope for from our oncologists is that they spell out the alternatives, but I’m afraid they don’t all do this. Too many women are just expected to follow the formula of surgery/chemo/radiotherapy/letrazole. My experience was that the side effects of the drugs were simply mentioned almost as an afterthought rather than something that could radically affect the quality of my life.

In my case Letrazole was terribly debilitating and I hardly recognised the woman I became. Certainly I didn’t want to be that woman with a burgeoning waistline, legs so painful I could hardly walk, sleeplessness and deepening depression. Okay, I respect that for many their response will be that you have to be alive to feel any of those things, but to me it was NOT living. It was existing - for what I didn’t know as I was too tired and dispirited to do any of the things I loved.

Let me end by saying that in no way am I advocating that women chuck their pills away. Each must decide what is important to them and for me longevity was not my goal. I work on the basis that if it comes back next week, I’ll probably still have a few years to party and this last year has been terrific. So, do your homework whilst bearing in mind that there are no Right answers, only the one that is right for you at this time with this particular set of circumstances.

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