Hello again Stephani,
Sleeping for 8+ hours in a row - bleeding brilliant and I am envious. I can identify with post operative pain and tightness. My main ops were over 2 years ago. I enjoy a good stretch out on the (assisted) chinning and dipping apparatus at the gym - not that I am recommending this near masochistic tendency for anyone else - each to their own and all that. Anyway before I digress, I just wanted to say in relation to your statement:
"Bone and joint pain is getting steadily worse but I have not done what I know I should do as far as diet goes: cutting out all sugar, dairy and non-organc animal proteins."
Has someone advised you to do all these things or is this something you have concluded yourself. It is not my place to say what is right or wrong as I think it is a very personal thing and we need to make our own informed choices. However, if you happen to be beating yourself up about not doing these things then I would advise you not too. Remember, if you were to try to cut out all sugar you wouldn't be having any fruit or veg etc! The research jury is still out so to speak on the best specific diet to follow apart from the usual healthy eating guidelines, but there is apparently strong evidence for no alcohol with regard to breast cancer (see links below).
Reading all the pros and cons of various foods can make your head go to mush and get you questioning anything that is going past your lips or on your body. If you do choose to cut out dairy, make sure you have a suitable alternative dietary supply of calcium (although I note you take supplement) especially with letrozole and other AIs. An advantage with taking Tamoxifen when post menopause is that it can be protective of the bones and not deplete bone calcium.
Anyway, just in case you or anyone is interested, to quote Breast Cancer Now's response to a recent post on diet:
We would encourage anyone who is considering advice around diet to refer to the information from the World Cancer Research Fund.
The World Cancer Research Fund pulls together the most authoritative scientific research from around the world on cancer prevention and survival after breast cancer through diet, exercise and weight management to help people make informed choices to reduce their cancer risk.
For those who want to read more about breast cancer prevention:
For those who have been diagnosed with breast cancer:
I also attach another link to the World Cancer Research Funds Table of Contents for the whole "Diet, Nutrition, Physical Activity and Cancer: a Global Perspective" with individual links to specific items such as meat, fish and dairy products, as well as links to specific types of cancers.
By the way, love and healing to you as well Stephani,......and enjoy your grub.
Thanks so much for your input. I will talk to my oncologist next Tuesday to see what he thinks. In the meantime I will continue my daily walks and keep moving as much as I am able. I finished 24 rounds of radiation to the left breast and armpit area on July 31st. It's been quite painful recently so I continue the stretching exercises I was given but I am chalking all the discomfort up to Letrozole. I find taking at bedtime with 10mg of melatonin helps me to sleep uninterrupted for 8-9 hours for which I am very thankful. Bone and joint pain is getting steadily worse but I have not done what I know I should do as far as diet goes: cutting out all sugar, dairy and non-organc animal proteins. I do supplement D3 with K, C, B6, B12, Magnesium and calcium to help my bones.
I appreciate everyone taking the time to share their experiences @Chick1, Maureen, Susan, Kaggy and all. Sorry if I've forgotten anyone. Love and healing to all of you.
Thanks Chick1 - you are right, what if the cancer returned and I hadn’t tried the meds. It would be difficult not to blame myself I think.
Thanks Susan also. It is good to hear of someone who is having no SE’s - everyone I have come across so far at the radiotherapy treatment have not tolerated letrozol and had to come off it. Maybe it is the old saying of you hear the negative but not the majority positive of everything.
I have always been a healthy eater but need to concentrate on eating more of the food you mention.
So much change to life after diagnosis- it takes a while to adjust I have found.
Thanks again xx
Have been taking Letrozole for six weeks with no SEs at all . I am 62 these drugs are not cheap ... they significantly reduce recurrence risk . Do give it a go along with all the other stuff like pomegranate juice mushrooms greens turmeric etc . All adds to mix
Hello Kaggy and all,
Best wishes to you Kaggy with your treatment. Yes it is a lot to think about weighing one treatment against another and taking into account pre-existing/individual situations etc. along with whatever else. Good for you for reaching a decision even if you are still a little apprehensive.
I remember that feeling too when I decided to bite the bullet with the Anastrozole. I just thought well if it gets really bad then I will have a break and discuss it with the medics, work my way through the options and so on. Another motivator was that I knew that if I had recurrence etc, I would be one of those people who beat themselves up thinking ....but what if?.......Arrrh....(even though there are no guarantees with dutifully taking AIs or Tamox). At least by trying it I could reassure myself and say well I gave it a good go.
A nurse practitioner who undertook my recent annual BC review said that keeping to and maintaining a healthy weight was the most important thing in reducing side effects of oestrogen depletion from the Anastrozole or other hormone treatment. That the dip in oestrogen production after starting the Anasty would have been less drastic than if I had been larger. Perhaps, who knows? She only brought this up because I had asked whether having less side effects was a sign of less efficacy of treatment. She did say that she was not aware of any research to indicate this. I know - I am impossible aren't I? Concerned about having severe side effects and then concerned if I am finding them manageable at the current time.
I think regarding hormone treatment we have no real objective test at the moment to see if it is actually working. At least with blood pressure tabs or diabetes treatment you can at least easily measure blood pressure or sugar levels etc. Measuring circulating blood levels of hormones may be an unreliable indicator. I would not think it would indicate possible concentration of aromatase in other tissue, for example if a tumour has started making its own supply of aromatase (indicating drug resistance). I assume measuring would be of even less use with Tamoxifen as this does not reduce circulating oestrogen but inhibits its action on tumour cells.
Anyway, I'll just continue taking my chances with the Anasty and lifestyle factors.
Good luck and best wishes to all,
Hi - I have now been staring at a box of Sun Parm brand letrozol for a month. Reading this string of posts has given me the courage to just ‘go for it’ finally. The point made earlier by someone that finding the strength after operations, bisphosphonates and radiotherapy to then tackle another drug with likely SE’s is hard work.
I am 54 with a long history of endometriosis and problems with hormone control and can’t help but link this with what I now have to take. However much I tell myself it is for a good reason I also am looking for a quality of life.
The post by Chick containing info re natural alternatives was excellent - thank you.
And we do all have to make our own decisions but it’s good not to feel alone. ( though obvs I wouldn’t wish this on anyone!)
I have referred to the forum before now for info but this is my first post which for me shows I am apprehensive.
thanks folks x
Hi Harley, sorry to hear you are struggling with Letrozole. I think you’ve got a wide discussion going on here, with some very good advice, especially from Chick. I’m just going to add my positive bit in here, if you don’t mind. It doesn’t make me feel as though I’m in a living hell, and it doesnt stop me from living my life to the full.I’m 72, been on it 2 years and have lung mets, so I’m on Palbociclib as well. The break through for me was getting a brand which agreed with me - Teva. My SEs instantly became manageable. I’ve got aches and pains, but I’m an old girl, so I’m going to get them anyway. I exercise at least 4 times a week, and I just love my aqua aerobics and TaiChi . The warm water is very soothing and helps my Lymphodaema, and the TaiChi helps my joints and mind.
i think the NHS would be more than happy to discover a natural replacement for Letrozole as the tablets are £150 each, or so my BC nurse said. I help mine along by adjusting my diet so the tablet doesn’t have to work so hard locking down the oestrogen. I try to be dairy free where possible, and also organic. I don’t think additional hormones do my oestrogen levels any good. That’s my very personal opinion.
Oestrogen levels aren’t checked, and the Letrozole is the same dosage for everyone, young or old.
I hope that all the posts have helped to answer your three queries. Do remember that we are all unique, and even with the same disease and treatments we react differently. Hole everything goes well at the hospital for you. I wish you luck in whatever you decide. X
Sorry to hear that you are having such a rough time. I don't know about private prescriptions but I suppose you could try a consultation with a private practice. Might all be rather expensive in the long run when the cost of meds added on top. I know I probably don't need to say this but please be wary of any online purchasing etc. It seems a shame that they did not let you have longer on the Femara, as the negative effects may have shown up when using it for a bit longer as it can sometimes take a while for some side effects to take hold and at least you would not be left wondering that it is due to the brand change etc
Just wondering, have you tried asking/discussing with a different GP in the Practice. I know it is not really the same thing but I started off with the Teva brand of Anastrozole and wanted to stick with it. Different brands may make no difference to some people but I did not want to risk it nor did I want to be presented with a different brand at each prescription! I asked one doctor to state the brand on the script. She said she could not do it as they were not allowed because of costs etc. I asked another doc in the same practice and she said yes no problem.
How is your break going? Have the side effects started to subside? Have other available treatment options been discussed with you like another AI or Tamoxifen? I know they may have similar side effects but different women have different responses it seems and a change can sometimes mean the difference in continuing or stopping treatment.
Best Wishes Maureen,
Good luck with trying the meds again. Hope it works out for you and you don't have too many side effects. You sound like you are giving it a good go by trying various options. You are so right about it being a personal choice in the end.
Hope you have a lovely holiday,
You may want to confirm the following (for example, via your medical provider/contacting the BC Now nurses on the helpline or by posting a query on the Nurses Section of the forum etc) but as far as I am aware there is no evidence to indicate that the 3 Aromatase Inhibitors (AIs), including Letrozole " can cause other cancers in our reproductive system".
Is it possible that your Naturopath is getting confused with Tamoxifen which is not an Aromatase Inhibitor but acts on circulating oestrogen? I have attached some information for you below regarding the apparent relatively small increased risk of occurrence. Bear in mind that Tamoxifen can be a treatment option for both pre and post menopausal women, with some women preferring to remain on it than switch to an AI or are offered Tamoxifen if they are finding AIs quite troublesome.
The following is from Breast Cancer Now https://breastcancernow.org/information-support/facing-breast-cancer/going-through-treatment-breast-...
"Effects on the uterus
Tamoxifen can affect the lining of the uterus (womb), known as the endometrium, which may become thickened. If you have any unexpected vaginal bleeding or pain, tell your GP or specialist. In a few cases, use of tamoxifen in post-menopausal women may cause polyps or ovarian cysts or, even more rarely, cancer of the uterus (womb). Current evidence suggests that there doesn’t appear to be a risk of uterine cancer in pre-menopausal women taking tamoxifen."
The following is from Cancer Research UK https://about-cancer.cancerresearchuk.org/about-cancer/womb-cancer/risks-causes
Tamoxifen is a hormone therapy for some types of breast cancer. It can increase womb cancer risk, as it is thought to have a similar effect to oestrogen on the womb. This is a rare side effect of taking it.
And the benefits of taking tamoxifen as part of your treatment for breast cancer outweigh the small risk of womb cancer.
If you are taking tamoxifen, tell your doctor if you have:
If you are beginning to have issues with Letrozole, then maybe discuss with medical staff about your individual risks, benefits and different treatment options, if you have not done already. In my opinion, accepting or refusing medical treatment is about making an informed decision, based on individual risks (including quality of life) and benefits , that a person will be comfortable with.
By the way, I am on Anastrozole and have been for just over 2 years. I have had a few ups and downs but nothing that has not been too dire so will continue with it for now. I tend to take it a day at a time so to speak rather than thinking about taking for 5/10/whatever years.
Best Wishes to you Stephani,
I have never had my hormone levels checked.
I am 64 had mastectomy 2016 stage 2hr+
I was initially on Femara brand Letrozole, was not too bad on this, after 3 months Doctor refused to give anymore due to costs, I have been issued with several generic brands and have suffered with depression, aches in feet, hands, most joints, terrible headaches and of course weight gain.
I am having a break (8weeks so far) and now want to go back on Femara even offering to buy it myself, but the Doctor won’t give me a private prescription and the hospital won’t prescribe it. I hope you find a suitable brand that gives you least/no side effects.
Hi ya Stephani
Ive had six month off Tamoxofen, at first was prescribed Letrozole but couldn’t tolerate it my gp wrote to my oncologist and because of the hormone therapy i had already taken (2years) it has given me an extra 2% less chance of recurring plus 1% from bioposphates which now gives me a benefit of 2% if I go back onto the medication, I am going to give it another go when I get back from my holidays next week, but if the aches and pains return then I will stop it again its a very personal choice and a difficult decision to make only you can decide for sure xxxxx
Thank you so much for this thoughtful insight. I am 4 months on Letrozole and the pain is beginning so I am looking for alternatives. Appreciate anything I can learn on the subject as my Naturopath has said AIs can cause other cancers in our reproductive system and I'm a bit out off by that to say the least.
Hey guys I got my diagnosis 2 years ago, age 58, lumpectomy 15 rads the prescribed Letrozole! For me it was horrendous so tried Extremestane still awful, January 2018 started on Tamoxofen which for me was know where near as bad as the others, but recently I’ve got pain in all my joints feet, knees hips shoulder....... so I went to see my gp and am on a four week break to see if the Tamoxofen is to blame! My gp did do me a estrogen hormone check it was 28%.
im not sure yet where this will lead me to, but I think if the pain I’ve been experiencing goes away I will ask to have the original brand of Tamoxofen to see if I can tolerate it better if not I’m not continuing the next 8 years taking it, ill be almost 70! I want to enjoy my next ten years am sick of being in pain every day ! Xxxxxxx
Hi, I’ve been on Letrazole for nearly 2 years and hate it! Hot flushes, major aches, thinning weak hair, 2.5 stone weight gain!! And my eostrogen levels have never been checked. Spoke to my doctor last week as decided to take a break from it, I asked for an appointment to see my oncologist as want a different medication, I was also told that I would have to take it for life, I’m 54. Regards Angie
Thank you. Not sure if I fit the heavenly angel description .Hope you had a lovely time with your grandchildren. Just wanted to wish you all the best for this Friday and a speedy recovery.
Best Wishes to you and your family,
Thank you! You give such great advice Chick ... like the heavenly angel here to help and offer support!😀
The surgery has been delayed until Friday now, which I am happy with. I had the choice to go with the original date but know my surgeon had already extended her list to fit me in so have agreed to switch surgeon and date. So meeting with new surgeon on Tuesday. It is only 3 days, gives me time to clear the diary and give my two gorgeous granddaughters ( one aged 6 and the other 18 months), an overnight stay and lots of hugs!!
Your nurse advice, to wait until you have all the information, is right in my opinion. I can understand your worry due to having other health conditions to manage and all factors need weighing up.
I just wanted to wish you the very best for surgery next week and a speedy recovery from that. I hope you can put it to one side for the next few days and do things that you enjoy and which may help lower your blood pressure. Take care of yourself.
Chick 🐣 x
Just to add (although I'm sure you know anyway) that one of the common side effects of Letrozol is to raise blood pressure.
Good luck with you operation and future choices.
Thank you so much for taking the trouble to send such an informative reply, it has helped me so much. I will take some time to digest it, but you make such a lot of sense! It was good to hear such a balanced view on the whole debate of Letrozole and other treatments. I have been assigned to a wonderful BC nurse and told her of my concerns, and she was very helpful and advised me to not worry until we all know the full picture after surgery, then to make a balanced decision. But I am assured I will not be sent to the ‘naughty step’ if in the end I refuse😀
I go in for surgery on Tuesday, assuming my blood pressure behaves as it is terribly high so I am monitoring it. Fortunately the hospital and I are good friends ...I have just spent the last 3 years being sorted with atrial fibrillation and heart failure, hence perhaps my reluctance to take hormone therapy... I am already rattling with medication!!
Thank you for all the support.
Sorry to hear about your diagnosis. I can relate to your statement of "trying to make sense of it all" at the beginning. As the well used cliche states, try and take things one step at a time.
Regarding your initial post below:
1. Are the oestrogen levels checked prior to subscribing Letrozole and monitored throughout?
No, not as a matter of course. However, there are private/online facilities offering such services. I would suggest you speak with medical staff first if it is of concern to you before parting with your cash etc. What is your reason for asking about this? Is it for a baseline measure? Subsequent tests to ensure any treatment, natural or otherwise, is having a positive effect?
I would not mind having one at the mo just to make sure my oestrogen production has been depleted by approx 97% from the impact of Anastrozole!! However, in the end, would baseline testing or subsequent testing be of major use when, for example, it is not known what level of oestrogen it takes for hormone receptor cancer to grow and develop in the first place.
If you do not know already, you may find it helpful to find out if the cancer is strongly hormone receptive and whether it is double hormone positive. Such information may help you and medical staff weigh up the pros and cons of Letrozole or other similar treatments. In the end, it is up to us whether we accept the treatments or not.
2. Has anyone sourced natural ways to reduce their oestrogen without the need for meds?
Nature has already considerably reduced your oestrogen supply as no doubt you felt with when you went through your difficult menapause period! As far as I understand it, ovarian testoserone production (which is converted to oestrogen via aromatase) will decline 12-15 years after menapause (although I have seen various time frames!). However, it can also be produced in other body sites such as the adrenal glands. Wherever it is being produced, it should decline with age so less to be converted and circulate!
Maintaining a healthy weight/body fat ratio should also help in reducing production so diet and exercise are important. "Natural ways" seem to focus on being careful with what you put in your body (e.g. eating organic/processed reduced diet/low or no alcohol diet) as well as what you put on it (e.g. paraben free products etc). There is a whole host of "natural" advice out there, trouble is some of it is just preying on the vulnerable parting with their cash, contradictory (eg. drink milk/don't drink milk, eat soy/don't eat soy) and lacking significant research. So much advice - enough to leave your head feeling like mush and you paranoid about anything that is going in and on your body. Just as a point, if there was so much oestrogen in certain foods and products to have significant effect, then I am surprised that Tamoxifen has not been found to be more effective in post menapausal women than Aromatase inhibitors, as it acts upon circulating oestrogen rather than ceasing it's production.
I have seen some foods listed as "natural aromotase inhibitors". For example, white button mushrooms, onions, citrus fruits, pomegranete. Not sure about any research on their effectiveness and the quantities you may need to eat! There are supplement type products available, for example as marketed on Amazon, which claim they also reduce oestrogen production.
In the end, which ever way oestrogen is reduced, one will surely still feel the effects of this in one way or another. Hence, I would rather stick with the tried and tested medication route for now as well as maintaining healthy weight, diet, exercise etc.
3. Finally does anyone have positive experiences of this medication!?
I have been on Anastrozole for about a year and 7 months. The worst side effect I have had is excrutiating lower leg cramps mainly at night. Fortunately this has not happened often. I have also experienced more drying out of mucous membranes whether in my nose or elsewhere, and being a bit more stiff when getting out of a chair!! However, I have not had anything that I have not found manageable or life destroying at the moment.
Before I started my first pack, I was apprehensive and stared at them for a few days. I think I had had enough of it all by then, i.e. chemo, herceptin, surgery and complications, radio and bishposphonates and aromotase inhibitors to now think about. ENOUGH! In the end, I thought I had to give it a try and just see. My cancer was ER8, so a good candidate for treatment.
If the side effects were recking quality of life to an unacceptable level for me, then I would discuss it with Onco, have a break, try and work my way through the other products before giving up completely. But I will not know this unless I give them a good go. Fortunately, it all seems to be ok at the moment. Long may it continue.
In the end, we are all individuals. We have to weigh up our individual risks and benefits and make informed decision that we are comfortable with. I wish you the very best with your treatment and treatment decision making.
I agree Kathyx. We can cope with something short term but longer is a different story. I am early in the process, still awaiting date for surgery but just trying to make sense of all the treatment and feeling like I am being processed through a system!!
It sounds like you have made some massive changes to your lifestyle and this surely must help? It is exactly the approach I want to take. I agree, the percentage benefit doesn’t seem worth the discomfort so I am yet to be convinced about the hormone treatment but will keep an open mind.
Good luck with the oncologist and radiologist, please let us know how you get on!
Thanks catokitty, it is good to hear something positive. Four years is a good length of time, so glad it has gone well for you. I know we all react in different ways to medication and I am not entirely ruling out trying it, just wanting to weigh up the options. When I refer to natural treatments I am thinking more of diet and foods, not supplements. Still interested to know if anyone has been offered blood tests to check oestrogen levels?
I think that the worry for many of us (as expressed here) is that AIs will amplify problems we already have. I was fortunate in having an easy menopause but I do suffer from depression, a strong inclination to put on weight and, more importantly, arthritis pain in my knees. The weeks I was on Taxol amplified this enormously and the ongoing Herceptin has also worsened the problem, if not as much, so I know that I wouldn't be able to put up with that long term. Something you can cope with fr a couple of months isn't the same as coping with it for 5/10 years!
I'm likely to be nagged by two specialists in the next fortnight, the oncologist this week and the radiologist the week after and I'm planning to tell them both that I'll give the AIs a try when I finish the Herceptin in the summer, so that I can be sure of what is having which effect. I'm also going to emphasise the lifestyle changes I've made so they can see that I am taking the hormonal situation seriously. Predict shows a percentage improvement for me of 2/5/6% over 5/10/15 years which, in my situation, doesn't seem a large enough benefit if I have the side effects that many people suffer.
My experience has been positive. I have been taking Letrozole for four years without any real side effects. I had some joint aches and pains which started a couple of months after starting taking it but they subsided a few weeks later. I don't know of any natural treatment to reduce oestrogen but of course there are a million supplements out there that make all kind of claims. If you do find a natural supplement you can check it out on the Sloan Kettering website which has a comprehensive list of safe natural supplements.
Thank you so much for your reply😀 I can really understand your reluctance to even start the medication and I am struggling to understand why we would be put on a drug where side effects include weight gain, menopausal symptoms and the risk of osteoporosis when with careful diet and exercise we might manage these ourselves.
Like you I am trying to lose weight via Weight Watchers and cut back on the wine🤔. My husband is older than me and fears the remaining years together will be blighted by me being a monster on a second menopause rather than enjoying life. It is a difficult decision isn’t it? It is very comforting I am not alone in my relectance, thank you!
I'm a similar age as you and have been staring at an unopened box of Arimidex for two months! I wasn't checked for oestrogen levels and I believe it isn't normal unless you have it done privately. So far I've been concentrating on losing weight (3 1/2 stone on 9 months) and giving up (almost) alcohol but there are a variety of supplements that people do take but I'm still researching them so have no direct experience.
Have you looked at https://breast.predict.nhs.uk/index.html to see what percentage difference taking an AI is likely to give you? At present, the figures don't seem to add up for me when considering the side effects.
I am newly diagnosed with stage 2 hormone receptive breast cancer. I am 64 and had a horrendous and long menopause which I finally put behind me a few years ago. The bc diagnosis came as a shock but I am coming to terms with surgery followed by radiotherapy. What I can’t come to terms with is the thought of ten years on Letrozole with a recurrence of a life of hell and all my family feel the same!
So I have some questions which you lovely ladies may be able to answer:
1. Are the oestrogen levels checked prior to subscribing Letrozole and monitored throughout?
2. Has anyone sourced natural ways to reduce their oestrogen without the need for medication
3. Finally does anyone have positive experiences of this medication!?