Letrozole & Thereafter?

Going through breast cancer treatment Hormone therapy
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Hi, I hope for kind sharing / advise on the situation I am in please. I have listed down alot of questions that comes to my mind (thinking from out of the box) and I sincerely apologise for the length of them. I would just like to ensure I am well prepared and informed before I speak with my medical team / breast nurse. There is no need for all the questions to be answered. Any answers to any questions at all will be appreciated. Thank you.

  1. I will be having a telephone discussion with my breast clinic in another week or so to discuss about my letrozole intake. In my meeting with a doctor last year (as there was a concern with some changes to my breast and weight, thank God I am well), I was told to continue taking letrozole as it is good for me. The information of me to continue taking letrozole wasn’t stated in the visit summary letter that was posted to myself and also my GP after the visit. My GP recently found a letter (probably dated last year, I can’t remember) that says I was supposed to stop taking letrozole. In my discussion with my GP, she referred me back to the breast clinic for further discussion.

  2. I have taken the following courses of medications (amongst some other treatments etc) :

  • Appx 2 years of Tamoxifen.
  • My ovaries were then removed.
  • Approximately 9 years of Letrozole.
  • The cancer I had was triple + breast cancer.
  • Some treatments I have had : Chemotheraphy, Radiotheraphy, Zalodex, Tamoxifen (after that, Letrozole). I have also removed my ovaries.

  1. I am trying to find information if there are researches for taking Letrozole for more than 10 years. Any guidance on this would be very much appreciated.

  2. After much consideration, I would like to continue taking letrozole. I read in another forum that this is something considerable. Does anyone have this experience before ?

  3. What other options do I have should my medical team disagrees to my intent of continuing with my preference in taking letrozole ? Do I have a choice to make decisions on this ?

  4. Are there any natural supplements that mimics letrozole ? Or supplements that help lessen the production of estrogen in one’s body ?

  5. What is the protocol / steps and what to expect when letrozole is taken off one’s medical list ?

  6. What would you do should your medical team decides to take Letrozole off you and you would like to continue taking it ? What other things that can be done on this regard ?

  7. What supplement would you take to protect / look after yourself should your medical team decides to take Letrozole off you and you have no choice but to submit to the decision ?

  8. Any information at all, or sharing of experiences be it relevant to the above or not are very much appreciated.

My very sincere apologise for the so many questions. I am feeling concerned, stressed and worried. For me, Letrozole is a safety net to me. I personally think the decision would be a life changing one and I would like to ensure I make the right decision moving forward.

Hoping to hear everyone’s thoughts if possible. Thank you.

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Hi @daisies4ann I can’t answer all of your questions but I am on Letrozole for 5 years myself (over half way through) and discussed with the senior oncologist (with whom I had one phone call after six months on it) why five years not ten and, for some, why ten years and not longer. She explained that studies have found that the risk/reward algorithm swings firmly into the risk category after ten years for those without metastatic cancer. So, the significant issues that could/would be faced are osteoporosis causing breaks and impacting mobility, heart issues (apparently more women who have had BC die of heart disease than the cancer, which can be attributable to the obliteration of oestrogen) and, despite there being only a few studies on it, there is suspicion of a link between endocrine therapy and dementia. Dementia is my major concern because of family incidence and she was very cagey on the research results. A good friend of mine is currently being investigated for a decline in kidney function which appears to be due to Letrozole, she has been taken off it for at least a month to see if the eGFR rights itself but it may come to a choice between declining kidneys or risking BC recurrence if it doesn’t. So, in the spirit of “first, do no harm” the medics are loathe to continue on a treatment programme which has diminishing returns and increasing risks. If the NHS provides your prescription but your medics won’t agree to prescribe it any longer, I’m not sure that you’d have much leverage. All you can do is discuss it with your oncologist. As for alternatives, I wouldn’t know as I shall be glad to come off it in October 2027! You aren’t the first person I’ve seen raise this topic on the forum - have you tried using the search facility :mag: with something like “extending Letrozole beyond 10 years”? You may get some tips from there. You could also try phoning the nurses on 0808 800 6000 from 9am tomorrow as I’m sure they will have dealt with these questions before. Good luck.

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I agree with @Tigress that a call to the BCN nurse would be helpful in your situation.

There was a recent live with BCN and Dr Marina Parton from the Marsden and she said that taking hormone therapy for 5 years can have a carry on effect ( work for longer than you take it) for 20 years. This can be found on the BCN YouTube channel. I am on Aromatase Inhibitors for 5 years, nearly 18 months in. I know of another lady who had done 5 years and was offered another 2 but she said no due to ongoing side effects, she was told in her case the research had been updated ( she was in her early 70s)

I hope you get the answers you need.

:smiling_face_with_three_hearts:

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I suspect you already know that you seem to have formed a psychological bond to the letrozole and see it as a safety net. The mind is a powerful force to overcome, and you’ve been on hormone blockers for 11 years so far. There is some reseach that says the protective effects can persist a few years beyond taking it. Like others have said, while you might mentally feel you are warding off recurrance, the risks of heart disease and dementia can be increasing as a consequence of taking it longer than recommended.
The only natural way to keep hormones lower is to keep as lean as possible, definitely avoid being overweight. Weights and resistance training helps to maintain bone and muscles. There are no magic supplements that lower oestrogen unfortunately, though I am taking turmeric and glucosamine as my knee joints are suffering thanks to perimenopause.

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This BCN live was posted 2 days ago on YouTube. At 56 minutes they ask the question about taking hormone therapy for 7 years and being told to stop even though they were originally told 10 years.

Research over the years changes the guidance of how long we need to take these drugs and the risks sometimes outweigh the benefits of taking it.

I hope this helps anyone looking for answers. The BCN lives are posted on the forum and you can join and ask your own questions if it’s something relevant to you.

:smiling_face_with_three_hearts:

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I set off taking letrozole with the plan for it being 10 years. Adverse effects meant I switched to anastrozole but will still take overall for 10 years. I am 61 and have been taking it for just one year so far. It makes sense if one has an oestrogen positive tumour as I did to do this, but like others say, by 10 years the risks out weigh the benefits. Another breast cancer could equally easily be another primary of a different type. Furthermore one’s body naturally stops producing so much oestrogen in later life. I can only speak for me personally, but I will rejoice and give thanks if and when I make it to 10 years post BC and be very glad to see the back of my aromatase inhibitor.

Whatever happens. Take care. :two_hearts:

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Dear Tigress, thank you very much for sharing your thoughts and experiences. I am grateful for them. I can see where you are coming from. I have not tried the search facilty with ‘extending Letrozole beyond 10 years’ and will give it a try. Thank you again ever so much. xx

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Thank you @naughty_boob for kind reply and input. Thank you also for your mention of the youtube channel. I will have a look. I am 49 this year, and have tolerated Letrozole very well. Sadly, I am still not settled and not sure how to go about the meeting with my nurse. It is a telephone meeting, and I hope she would give me time to make a decision / digest everything. Every replies gives me insights and I am grateful for them, thank you ever so much.

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Dear Entropy, thank you for your kind reply. I appeciate your feedback, thank you. Sadly, I am overweight, although I have lost 10kg. I find it so difficult losing weight, but I am trying everyday. The risks of heart disease and dementia are serious risks, I am glad to be reminded of this. I hope the turmeric and glucosamine helps with the pain of your knee joints.

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Thank you very much for this, so grateful, thank you.

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Thank you suedot, much appreciate kind respond, thank you. The cancer I had was Her2+, Triple+ breast cancer. Thank you for sharing your thoughts. I hope anastrozole is kind to you. Take care too. xx

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I’d like to be lean, but reality is bmi snuck over 25 after treatment. Being more tired after has its challenges when your body tells you to rest. I’m addressing it at the the gym and ignoring that my knees crackle when I go upstairs.
10 kg is an amazing amount to lose, well done, that will help hugely. Thats 10kg less of oestrogen producing fat cells and your heart will thank you too. Forever lifestyle changes are needed to shift it as we get older. I’ve discovered how contrary to what is often said, initially exercise seemed to make me more tired, so pretty useless the day after working out. Just getting to the point where it does actually give more energy, but its been a fight to get there, takes months.

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Hi @daisies4ann I don’t know if you can see this link as it’s an Instagrammpost from Dr Liz O’Riordan who answers your question simply.

I know it’s scary but there are other scary things that can happen besides breast cancer so it’s important to have a balance.

Big hugs.

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To lessen estrogen from the body naturally. Well there are a lot actually and it isn’t that it lessens estrogen but clears circulation of old estrogen ( which is the problem) and also inhibits use of the alpha receptor while boosting the beta, also decrease IGF-1 and increase the killer cells. There are studies you can look at but I’m not allowed to list any in the feeds according to the rules, however, I am trained as a nutritionist and this is what I study especially after being diagnosed I really focussed on what can I do type thinking. Some things such as:

Rebounding exercise, resistance training, walking -Dr. Gregor suggests 60-90 min / day of movements , HITT(no need for longer than 30 min), movement daily especially lymph clearance and deep breathing practices (box breathing) is a great start.

(Just to clarify
 Nothing I say is replacing medical advice, the things I say are things you can find on your own with simple reading books, search engines, and even AI can help find. Nothing I say is “medical advice”. I don’t know your body, allergies, and what I say is a great point to discuss with a Functional Dr. Or other professional of your choice. )

Estrogen clearance & modulation: DIM (Diindolylmethane): 100–300 mg/day, Calcium D-Glucarate: 500–1000 mg/day, Green tea 2 cup/day or matcha is better - the ECG extract studies show are less effective than the tea or powders, Curcumin (NOT tumeric and make sure it is 90-95%curcuminoid, (with piperine):or liposomal: 1000 mg/day broccoli sprouts -up to 1 c a day start slowly like at 1 tbsp a day. Parsley - 2tbsp to 1c a day, berberine helps with the glucose and more (mimics what metformin does),
Fiber is very important so chia seeds 2-4 tbsp/day, then activated charcoal before bed.

Estrogen receptor modulation: Chrysin + Piperine, Resveratrol, Genistein (if tolerated), Apigenin (from parsley/celery extract)

Just a note on tumeric vs curcuminoid (curcumin) they are not the same thing even though curcuminoid is extracted from tumeric - they act very different in the body. Tumeric itself suppliments are the full plant enzymes and have estrogenic and mimic estrogen ability (bad for any estrogen pos diagnosis) while curcuminoid does not, since it is one enzyme removed from the tumeric not the full spectrum. studies show it blocks estrogen receptors from cancer usage.

This is not replacing the medical advice in any way. You asked what you can do, a great resource is Dr. W. Li book Eat to Beat Disease. Also Dr. M. Gregor book How Not To Die book, and really great book too is Dr. V. Longo Longevity Diet, and lastly would be Dean Ornish’s newest researched books Undo It, and The Spectrum, books

If also suggest reading studies by Dr. Jed W. Fahey, Sc.D. anything he published on his research with broccoli sprouts is worth the read.

A bit of reading or listening if using audiobook, but in my opinion some of the best information you or anyone can get if you are searching for the answer to the questions “what can I do to support my bodies ability to fight, recover, be stronger?”

Hope that was what you were looking for.

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Thank you very much for kind encourgement, @Tigress. Hope you are having a very lovely long weekend.

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Thank you very much for your kind thoughts, @entropy I think I have come to a point where I have been stagnant in the weight loss. I have been about 82kg for some months now. I am planning to maybe join a gym or take up a class, hopefully it will help. I wish you a very lovely long weekend.

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Thank you so very much @astseesit for this. I am truly grateful for your mentioning what you have mentioned. I understand what you have said are not medical advises, I am just grateful you have mentioned them and are sharing your experiences.

May I ask please some questions, if you don’t mind :

  1. On the, DIM, berberine, brocoli sprouts and curcumin; what brands are you taking ? I will of course do some research before taking them.
  2. Do you mean 1 cup when you have mentioned 1 c ?

Would you mind if I send you private messages for further information please ?

Looking forward to hearing more from you.

And wishing you a very lovely long weekend.

Thank you.

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Hi,

I started my letrozole journey in 2018 and was told I would be on it for 5 years. I had some horrendous side effects but stuck with drug in the belief it was what I needed to do too along with increased exercise, pots of green tea and vit d too prevent a return of bc. In 2023 I was so looking forward to the end of letrozole and its health issues but NHS guidelines had changed from 5 to 8 to 10 years according to my oncologist and he wanted me to take it for another 5 years If it was not for the side effects impacting on my quality of life I might have agreed because the fear that without letrozole my bc would return was so strong as a compromise I agreed to another year and to discuss my options in Sep 2024.

Unfortunately in July 2024 my bc returned letrozole has now been replaced by monthly fulvestrant injections daily verzenio tablets and monthly denosumab injections

I think taking drugs like letrozole long term without some kind of robust health review poses a potential risk to the long term health of some people. There needs to be more open and honest discussions between patients and doctors around these drugs and the measures that can be put in place to manage patient expectation provide support and up to date advice especially when NHS guidelines change

I was just unfortunate but did achieve 5 year cancer free but would I have achieved this without letrozole that I’ll never know

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Ive upped my treadmill running lately and managed my 1st 5K last week. Been stuck on 66kg for months, but finally just under (Im only 5ft4). My knees are actually now better than they have been for a couple of years though remain crepitouus.
Wise to ignore anything to do with functional medicine. Is been exposed as quackery by medal professionals.

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Hi entropy

Wish I was stuck on 66kgs I’m stuck on 72 kg and only 5’ 3

Seriously thinking of going down the mounjaro route, I’ve never been this heavy in my whole life even at 9 months pregnant. Before covid hit I was about 54 kgs.

Sending hugs

Xx

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