As a survivor of one Zoledronic infusion which I tolerated about as well as Lockdown, i.e. not at all, may I suggest you factor in your teeth? No, I’m not joking. They will give you leaflets about Zoledronic Acid which mention the possibility of jaw necrosis in such a way that it sounds about as likely as bubonic plague. However you get advised to have your teeth put in tip top order before Zoledronic because basically getting a dentist to do anything beyond a scale and polish POST Zoledronic will not be easy. I use a private dentist who has been treating me for twenty years and even he says that working on patients who have had this treatment is fraught with anxiety and many insurance companies will not cover them. If you generally have a healthy mouth it’s not such a great worry but I have just had to have an abscess treated and because of the Zoledronic the treatment is long drawn out and may involve hospital. Oh, and another thing they don’t tell you is that Zoledronic acid stays in your system for at least ten years.
It may be worth asking your team if anastrozole would be worth trying in place of letrozole. I took it for ten years, finishing in January this year, and have had no particular side effects.
Will do! I heard about it’s use for prevention in the news today. Thanks!
Just wanted to share that I was petrified of letrozole due to everything I had read about it but honestly it’s fine.
I’ve stuck to the same brand and tried to keep as healthy as possible and everything is ok.
I guess we’re all different but for me I’m tolerating it well and prefer to take it rather than risk another reoccurrence.
Do what’s best for you but it’s always trying something first to see how you react and then you can decide from there.
Wishing you all love and best wishes. Take care xxx
You mentioned you stuck to the same brand. Did your GP/oncologist specify the brand? Or did you ask pharmacist?
I’m due to start either Letrozole or Anastrozole early December, so it would be good to know. I had read that other people found different brands gave different side effects.
Im glad it’s working for you. 
Hi there,
The Gp recommended we had a consistent approach as opposed to keep changing the brand.
So far so good although I am noticeably more achy. All manageable though.
Take care xx
Great I will make sure I do the same.
Dear Teddy I have also had an abscess and my dentist showed me my x ray that showed I had nothing wrong with the tooth, it was my cleaning at fault as I had some stuff between my teeth that was stuck and once this was removed I was fine. I didn’t have to go to hospital either. I have been cleaning my teeth twice a day, flossing, using interdent brushes too. I had really good teeth before cancer and I did clean them before but not as thoroughly as I do now. Only once a day and the occasional floss once a month or so. Since the new regime they look a lot better so I may keep them longer. I also use an electric toothbrush. The zoledronic acid infusion does help strengthen the bones making it less likely to get bone cancer the most common area for secondary breast cancer. I will only have six infusions over three years so I thought it was ok as they are only every six months
@teddy271
Thanks so much for sharing the tips about zoledronic acid. I am to be put on this drug in the near future. I think I will decline given the adverse effects. Strength to us all.
Hi
Very interesting. I reluctantly started taking Letrazole over 6 weeks ago but only took half a tab each day alongside a battalion of vitamins. I feel as if I’ve deteriorated and really want to come off them. I sailed through the surgery and recovery and haven’t taken time off work but the Letrazole is making me miserable. I feel 90!!
I should add that my GP gave me a week’s prescription of antibiotics when I went to see him worried about the abscess. I showed it to him, it was on the inside of my gum towards the back of my mouth on the left side. I have not had an abscess before or since! the antibiotics soon calmed it down, then I had the offending stuff removed by the dentist after she did an x ray. This made my tooth look huge, she said the area of stuff was near it, and there was only a millimetre between the filling and the nerve. I was amazed when I looked at the x ray as it made it obvious where the problem was and the dentist took so much time explaining everything. Thank you NHS! I still have a great NHS dentist lucky me. Seagulls
Hi @lizzage sorry you’ve had such a bad reaction to Letrozole. Some people get immediate SE and there is a chance those SE will dissipate after a few months. But they may not. The whole thing is a crapshoot and it ultimately depends on how risk averse you are.
You can take endocrine treatment and still get a recurrence. You can take endocrine treatment and get a HER2+ or TNC tumour instead. You can not take endocrine treatment and never have a recurrence or new primary. The most likely outcome is it might just do it’s job - the research statistics on AIs are clear on its benefit as a preventative treatment particularly for those with a highly er+ histology. There’s absolutely no way of telling who will get what and who will get nothing. Oncology is essentially a highly reactive discipline, they have no more idea than we do on what our outcomes will be, so it comes down to us as individuals to decide what type of risks we’re willing to take. Ask yourself how would you feel if you got a recurrence, particularly a metastatic recurrence, having given up on the endocrine treatment. Whatever your answer is should guide your decision.
Letrozole and Anastrazole are pretty much interchangeable so you could ask to be put on exemestane instead or even Tamoxifen, which works in a different way to AIs, but they all can cause SE and obviously a reduction in oestrogen causes its own issues. Always recommended to discuss with your oncologist or BCN before stopping although they will tell you it is your decision alone.
Hello all, I am coming back to this thread after much thinking and reading. I agree with Tigress that all of this, for each of us, is unpredictable. I do think it is odd, however, that there really isn’t any information on the effectiveness of Letrozole vs not taking it. I wonder if that might be due to it not being ethical to do trials with a control group not taking it. After extensive googling I can find studies that say Letrozole is better than Tamoxifen and that there are benefits to taking Letrozole after five years of Tamoxifen. On various cancer websites I can find vague statements like Letrozole “may prevent recurrence” or “improves chances of disease free survival”, but with no evidence of where that comes from or indication of how much it improves chances (I am aware everyone is different but there must be some mean /average figures).
Does anyone know of any study that demonstrates the benefit of Letrozole over not taking anything and not just about its efficacy compared to other drugs?
Thanks
Elaine
Hi Elaine, I’m paging @Kay0987 here as she is the most informed person I’ve come across on this forum and may well be able to point you in the right direction. She may not, of course, and she is dealing with an issue now so may not be able to respond, but here’s hoping she doesn’t mind me dropping her in it.
As for studies and statistics etc, they are only indicative so ultimately there are no guarantees. I know you know that and I do understand the drive to base very important decisions on meaningful evidence but, as I said above, it really is a crapshoot.
I think what drives a lot of us on with the endocrine treatment is the fear of metastatic cancer, which 30% of people will go on to face. When that happens, the treatments become a lot more unpleasant and are for life. For many people taking it, they are doing so pointlessly as they won’t get secondaries, but who knows whether you are one of the 3/10 or 7/10? No-one dies of primaries, it’s the secondaries that get you. As Kay herself has said, the only way you’ll know you won’t die of BC is when you die of something else. Hence the impetus to continue with endocrine treatment where it is relevant and if it doesn’t impact QoL too much.
Good luck in figuring out what is right for you.
Thanks Tigress, I agree with everything you say but what I really want to know is what percentage (compared to the 30%) would get metastatic cancer without endocrine treatment.
Also do you know where the 30% figure comes from?
cheers x
Here’s a study detailing some stats - https://www.cancer.gov/types/breast/research/letrozole-prevents-recurrence#:~:text=After%20a%20median%20of%208,years%20of%20treatment%20with%20tamoxifen.
As far as stats for letrozole versus not taking anything you can find that on Predict’s website. You can plug in the information for your tumor and see the different stats for different treatments compared to not doing anything. Here’s the website - Predict Breast. Here’s another study talking about it’s effectiveness versus doing nothing and why - The discovery and mechanism of action of letrozole - PMC
I will say that there are side effects to letrozole just like with any other medication and some people hit them all so there’s always a risk versus reward analysis that should be done. However it essentially works for women by being the best at eliminating estrogen, the fuel that hormone positive breast cancer needs to grow. For example with my bloodwork, and they’ve checked it twice now, a normal menopausal women has estrogen less than 30 but mine shows less than 15 which is where they want it. I may be at 0 for all I know. They don’t give an exact score. Personally I would always suggest trying to do what your oncologist wants you to do and if you try it and can’t have a good quality of life after reasonable accommodations then that’s when you discuss alternatives and come to something that is acceptable to both parties. And remember most people do tolerate it fine. I do. May have some issues with my bones as a result but I feel fine and that’s what most important. None of us want to take more medication than we need to but the thing with getting older is that bodies go bad. They just do. And if medication helps us grow older then that’s a good thing. Side effects can be mitigated and worked through. Dying can’t.
For the record, I’ve researched that 30% figure and it doesn’t appear to be accurate. Most studies show somewhere around 20% give or take a few. But the real answer is no one knows for sure. Too many do go on to MBC regardless though and you don’t want to gamble with that. Not yet at any rate when there is no conformed cure to look forward to (getting closer though I think. A study came out detailing the first what they believe is a cure for a stage 4 estrogen positive patient with a particular common mutation). As far though as a study documenting how many people would go on to get metastatic cancer without endocrine therapy there isn’t one now. It would indeed be unethical. However, all you have to do is look at the stats before tamoxifen came out for breast cancer treatment. That was in 1978. This is an old paper talking about the survival benefits for breast cancer patients and how they’d improved from the 40’s to the 50’s. In the 40’s five year survival rates were 53%. In the 50’s they improved to the grand old number of 60%. Compare that to now (I think like 98%) and you see the difference endocrine therapy has made. Granted our operation methods are better and so is radiation and chemo but there is still no doubt endocrine therapy has been the major game changer.
No problem with the tag, Tigress 
Didn’t know you could do that. I learn something new every day 
Kay, thanks very much, that’s really helpful! I will read those papers with interest. They may put paid to my circular thinking which is focussed on the point that Tigress made that people may be taking Letrozole (with all the nasty outcomes) when they never would have developed secondaries anyway (and of course not many would want to risk it when they are told that endocrine treatment is very effective). BUT not only that…lots of people who take it will develop secondaries because it isn’t that effective. Looking at predict the figures for disease free survival are already high (as you say, for most in the region of 80 - 90 %). That has to be down to the particular features of the cancer, the surgery plus radio/chemo. It must be those treatments (and developments therein) that have improved peoples chances. It can’t be endocrine treatment as that barely makes a difference on predict so not taking it isn’t that much of a gamble.
Anyhow, I will read up. Thanks again for responding. Elaine
Sorry Kay, I see that first article is one that I had read. It compares Letrozole to Tamoxifen. Perhaps I need to go back to search studies on Tamoxifen efficacy to get to the bottom of this issue. (Let me know if you know of any) And I’ll read the stuff on your other links, thanks. At least you have confirmed there aren’t studies on people taking endocrines vs nothing.
Thanks again!