Hi again, just wanted to mention that before I did the Predict model, I had been astounded at a scientific paper (Extending Adjuvant Endocrine Therapy for 10 Years) that was published in June 2021. I had been searching for more information on Letrozole. This paper gave me more information about my AET treatment than any medical professional who had a role in my cancer treatment. I find it difficult to say ‘cancer care’, because I don’t feel that I got much of that. It is also an easy read for a scientific paper. With that paper, and this forum, I was spurred to do the Predict model and gained real information about the likely change in risk percentages (and the fact that 48% of patients discontinue AET after 4 years) and, ergo, whether the side effects that have been increasing, are worth the small additional risk. I have found that during the last year or so, I have worried less about recurrence, probably because I don’t have the energy, so I am in a better frame of mind to make this important decision. I don’t believe I am considered high risk of recurrence, so that is also a factor. The future is unknown of course, but I feel in a better place now. Thank you so much for your good wishes and I also wish you many years of cancer-free life.
Thank you for sharing this - it has helped me.
Do you have a link to the paper you reference @madoolitle? I used to be a lawyer and am a sucker for intelligible research papers. No biggie if not.
There seem to be several at the top of the article. The site is National Library of Medicine. The most likely seems 10.3390/healthcare9060688. Let me know if it doesn’t work.
Thanks for that, the link worked perfectly. I was told at the outset that I would only be on AET for 5 years. I have to say I thought the 10year program was for people at higher risk but it would seem it was just another NICE recommendation following another research program’s conclusion. I can only assume it was changed back before my treatment plan was confirmed in September 2022. Either way, if it was changed again, my response would be the one that involves sex and travel.
The bottom line is, there are people who want to “throw everything at it”, there are people who are prepared to take the risk and there are people, like me who take it whilst reviewing the decision at key check points like annual blood tests and bi-annual DEXA scans. Ultimately we each have to take responsible for our selves and accept it was our decision if the ultimate outcome is unfavourable. By that I include those that DO take it and end up with osteoporosis or heart disease due to high cholesterol and not just those who don’t and develop mets. I have no idea if I’ll get to the end of my 5 years. If I do I will be about to turn 72. If I could have another 10 good years after that, I’d be content.
@Tigress @madoolitle I am reading your comments with interest and wonder if you could tell me if you have changed/assessed your diet, exercise increase/decrease/change of exercise choice. Have you talked with anybody (medical) about this aspect of complete health? I only ask as I am quite petrified of blowing my healthy bits to smithereens with all these drugs. I have kinda accepted that the chemo and radiotherapy is coming (although I am screaming inside and wanting to run to the hills) and it’s over a 6 month period but I am conscious of my future health which I see are important to you both when reading your comments too. I’m very interested in the metabolic approach too and the impact of food and diet but I get laughed at by the medical people - earthing sheet made them roll with laughter!!! I’m quite overwhelmed by everything and wanting to do what’s right for me. When I said I don’t think I want to do the hormone blockers my husband was so taken aback and almost fearful for me and I understand it’s my body but still it’s tough to see the fear on his face.
Hi @nicnac17 may I ask how old you are because I am approaching 69 and I believe @madoolitle to be early 70s so I’m not sure how comparable our regimes will be with yours. It is also a lot more reasonable to base decisions on quality of life when one is older as we may not have a lot of time for recurrence to happen anyway!
Having said that, yes I have changed my eating habits but not by anything particularly radical in this day and age. I suppose cutting out meat and sugar (my drug of choice 
) not because sugar causes cancer (it doesn’t) but because it creates VLDL which in turn heightens cholesterol and I have congenitally high cholesterol anyway, which can then also be exacerbated by Letrozole. I also do intermittent fasting. As I say, nothing out of the ordinary for 2024. I have always walked miles and I walk fast but have also constructed an exercise plan M-F from the two books “Moving through cancer” by Dr Kathryn Schmitz and “Get Your Oomph Back” by Carolyn Garritt which is a guide to exercise after a cancer diagnosis. It’s probably a bit old-codgery in truth but better than nothing, which is what I’d prefer to do. I am NOT a gym bunny. And, yes, I have been talked to at length by various medics about my fitness particularly in the wake of cancer.
Let’s talk about you though. I don’t know much about earth sheets and other alternative choices and remedies but I can tell you that you are entering a world of empirical science, largely based on chemicals. This may conflict with your values but the treatment regime your MDT has devised for you will be proven to have worked before. I have had many online discussions about treatments but I have NEVER tried to persuade someone to accept a treatment or not accept a treatment. On this occasion, however, I would ask you to not dismiss any of it out of hand. Yes, chemo, radiotherapy and AET will negatively impact your body in the short to medium term but they work. Before you embark on each stage of treatment you will be required to sign a consent form. Ask your questions then so that you can give informed consent. My lovely surgeon said to me that, in order, surgery is the most important treatment, then adjuvant chemo (which I did not have to have), then rads and finally AET. So you have a long way to go before having to decide on whether to take hormone blockers and your viewpoint may have changed by then so please don’t preempt anything.
I’m sorry for writing War and Peace but I’m two years on and one’s perspective does change over time. Your husband sounds lovely, btw, so for his sake alone, don’t take decisions before you need to. .
@nicnac17 @Tigress I am happy to help in any way possible. I am a bit surprised at your medical people not being interested in the food and diet aspects. I got very little advice/attention, but one thing that was thrust at me, was how to eat when being treated for cancer, and afterwards. I was also given various booklets, some from the dietetic department at the hospital and some that originated from McMillan cancer support. They were very helpful. It is the usual eating healthily and in smaller, regular amounts during treatment. Nothing earth shattering. But, there are things to avoid, that they should be telling you. During chemo, and for a period afterwards, your immune system will be compromised and you will be at risk of infections that you would normally deal with easily. You are advised to avoid all raw food (sushi, smoked salmon etc) and ‘live’ yoghurt, and cheeses that are natural and not treated, like Stilton and Danish Blue. This is because truly organic/processed food can harbour things that normally we take in our stride but during chemo can cause digestive problems. I was really surprised to see pepper on the list, and this is because pepper is not processed. Another one was pre-packed salad leaves, as the washing process is unknown. You really need to have this information from your care team. With regard to exercise, it remains important. It was a stock phrase from my oncologist to ‘exercise, exercise, exercise’. Of course this is dependent on how you feel at different stages of the treatment. I don’t believe that the type of exercise is critical, but of course, after surgery (if that is planned) it is important to ease back in. As my treatment was during the Covid pandemic and lock down, I could only walk every day, but I bought an exercise bike for indoors. I can offer my perspective on the treatments I was given. I started with chemo (8 sessions x 3 weekly). The ‘cocktail’ was changed after 4 sessions, and this was planned due to the diagnosis of the tumour and the hormone aspect. I was totally alone, both in the hospital and at home, but I was never in pain, nor did I ever feel nauseous. They have a lot of experience in limiting side effects. The first 7 - 10 days after each treatment, I was tired, but I would gradually perk up and be ready for the next treatment. I had a couple of feverish days when the cocktail changed, but just rested a lot and drank lots of liquid. I am not particularly brave or stoic, but found the treatment better than I expected. The unknown is always scary. I had surgery next, and only stayed in hospital overnight because there was no-one at home. The 15 days of radiotherapy were the most supportive and the team was fantastic. I remember them telling me that it would take me longer to find a parking space than the actual daily treatment, and they were right. And I didn’t feel a thing. I completed the treatment with 3 weekly Herceptin injections, again for the hormone receptor issue, for 14 or so sessions. Chemo is destructive, which is why it works, but the body does recover after it is finished. The issue of hormone therapy is the one area where I have been totally dissatisfied with the cancer care team. I was just given a discharge letter at the end that said I had to take Letrazole for 10 years and biophosphates, which I knew about because I had given them to my mother over the years. No explanations. I read and re-read the side effects of Letrozole but side effects are so individual and at times, random. I had no notion that I was putting my bone composition at risk or my cholesterol and blood pressure, as I had always been fit and healthy. So I just did what the oncologist prescribed. It is only now, 4 years later, that my quality of life is so poor, I started to look at what I could do to limit the adverse effects of Letrozole as I had reached a particularly low point. The biophosphates never worried me. They don’t stay in the body and only do their job if you take them. I was on a massive dose (I did some research) but the oncologist was happy for me to drastically reduce that. I just wanted respite from the daily routine of having to take the dose with a large glass of water as soon as I got up and then not lie down or even have a cup of tea for 45 minutes to an hour. The oncologist’s answer was, ‘exercise’, use that hour to take a walk. Never mind the weather! If I had had someone to talk to, it would have been fine. So, I have had side effects that I want to lessen, but not everyone does. You are younger than me (54 I believe), and your decisions about hormone therapy will be based on all the factors unique to you, and with your oncologist’s input. I have been on the therapy for 4 years, and even if I had known what I now know, I believe I would have tried it. Reading the scientific paper I mentioned before helped me a lot in understanding. Finally - husbands. My husband has seen me deteriorate in front of his eyes and lose interest in almost everything but when I told him yesterday that I had gained a wealth of knowledge about Letrozole and other people’s experiences and that I was likely to stop the treatment and get some life back, I saw the worry and panic cross his face. They love us and don’t want to lose us and I am spending time explaining my decision to him - and it has to be my decision. I would rather have a shorter time with him that we can enjoy than a prolonged half life where I get less able and more unhappy. I have reached a decision and I hope that together you will also reach your decisions, which will be based on the best information relevant to you. Good luck in everything you do and have a long, happy life. You will get through.
I’m 64 and have been on Anastrazole for 2 years next month, and for me the side effects have been minimal. Achy hips and Achilles in the morning for the first few months but those then stopped. I don’t have the stamina I used to have but that could be down to my age. I try to do weight bearing exercise such as walking or the gym for at least 30 minutes on 5 days a week to reduce the risk of osteoporosis. As I have little side affects, I am more concerned about the reoccurrence risk than the risks of taking it.
Yes I think the recommended minimum exercise is 3 x 30 mins of aerobic exercise and 2 x 30 mins of weight-bearing exercise per week. I have some hilariously Heath Robinson “weights” I’ve created but I concentrate on the legs. Plus tons of walking.
Yes I’ve used 2 bottles of water , cans of beans …
@Tigress I am 54 & since I turned 50 I have changed my whole health/fitness ethic around. My central force was to see my daughter get married and have grand babies. My daughter is 13. So for the past 4 years I have changed how we eat and what we eat. I have increased my exercise and well up until my surgery (last one in mid July) 3 x 30mins a week and weights 3 x 30mins a week. I am slowly getting back to it but very conscious of my arm and lymphoedema.
Before I was diagnosed my focus was to live to an old age, I was on HRT and this helped me 100 fold, exercise, food and I was just getting into supplements then bam cancer. So all of the above IS directing me to steer clear of the hormone blockers (my oncologist has said try them see how you go and if no good we can change or you can come off). But if I am brutally honest I don’t know what to believe or do, decision making fuelled on fear, conflicting info, big pharma bias, eat this, drink that blah blah blah.
I have fabulous talks with a nutritionist who believes I should be keto, cancer hates ketosis, wants me to take supplements (all natural), the pharmacist has said no not whilst on chemo but no explanation and I want to know why, I want to be informed/educated as to why NO! Having just reread this I’d say yes chemical conflict is there but I will take your advise and not dismiss anything just yet.
@madoolitle I am sat in my garden enjoying the last rays of sunshine and your reply had me in tears. Yes husbands you are right they love us and don’t want to lose us, mines struggling I think because he is organised, methodical and loves a spreadsheet this doesn’t fit within his world and it’s all so raw and new for us we are trying to deal with it the best we can.
I read the scientific paper you mentioned and I didn’t understand it at all, at all!!! I’m going to read again in bed later and see if I can make sense of it.
Thank you both for your replies and honesty and as you will see from my reply I am all over the shop! I wish you both the best and long lives too
nicnac17
I’ve read all the comments in this thread & feel that I haven’t personally been given much information or support to help me make my decision about taking Tamoxifen. I cannot fault my surgeries or radiotherapy treatment, but have had no contact with anyone to give me any advice, other than take Tamoxifen or the cancer will likely come back I worry every morning when I wake whether I will get secondary breast cancer by not taking the hormone blockers. I will try to speak with my oncologist on the 21st, but I know she will tell me to take them. This forum is the only release for how I feel, I’ve got past discussions with friends & family since my all clear, although very supportive, they obviously cannot understand the fear that doesn’t go away. I know I should try the Tamoxifen, but my instinct still tells me not to, I fear more what it would be doing to the rest of my body than the reduced chance of cancer recurring if I take it. I tried the SomeoneLikeYou contact, but they could not match me with anyone my age in a similar situation, someone much younger is bound to do everything to prolong their lives. I think I need to accept I do not want to take the blockers, try to stop thinking about it so much and face whatever happens, if it happens. 
Hi @balchik I think I read higher up the thread that you are in your mid-70s (apologies if I’ve got that wrong) and wondered why you have been prescribed Tamoxifen rather than the AI that most of us post-menopausal women get. Did your oncologist go through Predict with you or has your surgical histology report got an NPI number on it? These are the only indicators that any of us have. I wasn’t told my Predict score by my oncologist at any stage but researched it myself. There’s always a danger in doing so that you might learn something you’d rather not know but as you have been told that you are cancer-free, the AET is preventative rather than curative, so perhaps you can ask to go through Predict during your appointment on the 21st? I really hate to think of this causing you so much distress. Fear of mets is something that anyone who has had any form of cancer faces but the way I deal with it is to think that it is a theoretical thing, like the potential for developing another disease - possible? yes, probable? unknown but the odds are good. Please let them know how badly things affecting you, particularly when an honest conversation could give you clarity of thought.
Hi Tigress, Yes I’m 76 and have osteoarthritis, which is why I was prescribed Tamoxifen as it’s kinder to bones. I’m going to try to concentrate on the here & now & cope with future problems, if and when they occur. Thanks.
Message received and understood. Sending you every best wish for the future.
I know of a post- menopausal lady who refused AI due to history of osteoporosis . She is on Tamoxifen and is aware that it may not be as effective for her as an AI but her doctors felt that it was still worth her having it.
I was also initially prescribed this by my surgeon - to be fair I didn’t know my menopausal status at the time but I was 56 so you would think he would have automatically put me into the postmenopausal category . He actually said that he didn’t feel it was necessary to put me on AI and that if I didn’t get on with Tamoxifen it would be reasonable for me to stop it and included that in his letter to my GP . I then had myself tested and found out I was post menopausal and was also afraid to start the Tamoxifen after my retinal haemorrhage which ithe Oncologist told me is classed as a thrombotic event and changed me to Anastrozole as she felt Tam wasn’t suitable for me with my history. I then had to wait for a regional Pharmacist to authorise the Anastrozole ( I don’t know why ) . Neither my GP nor my BCN were able to expedite this process and although there shouldn’t be I’m wondering if there are cost implications as the Breast Consultant described Tam as “cheap and cheerful”
I hit the send button before I finished that - maybe the thinking is that if the risk of recurrence is very low that Tamoxifen is cheaper but will do the job . There might be a perception that it’s a bit kinder on the body or more likely it’s a drug they are all comfortable with because they have been prescribing it for so long.
Yeah, maybe. When I was first diagnosed and knew I’d have to take an AI, I was chatting to a doctor socially and mused whether I’d have Femara, which was the only one I’d heard of. Once he stopped laughing he said that drugs like statins cost the NHS 99p for a box of 28 and, at the time, Letrozole (other than Femara) cost between 99p and £2.99 for a box of 28. The numbers being prescibed endocrine treatment for BC aren’t that great particularly when compared to the millions getting statins so I can’t believe the margins make that much difference. He refuted the idea that NHS doctors were in the pay of big pharma although I do wonder about the wholesalers who determine which brands pharmacies will get each month. I was offered Tam so that I could use Vagirux for vaginal atrophy in the beginning but I just couldn’t bring myself to swap.
Yes if you’re buying in bulk there’s a massive difference between 99p and £2.99 , or more for Femara ? I wonder if it has any bearing on availability of certain brands . I’m wondering if there is a cost or availability difference between Letrozole and Anastrozole and that’s why it had to be authorised by a regional Pharmacist. From work I know that sometimes drugs are very expensive when they are first released but as they become more widely used and there’s more available / more companies producing it the price comes down .