Absolutely Suzy ! I so agree with everything you have written. My breast cancer nurse once said to me, when I was wrestling with a decision right at the start of my treatment, that stats and opinions of medics are good, research very helpful, information gathering important, BUT a psychological 'comfort' about a decision on the part of the individual is most important. Sometimes you need to search your heart and head (and life experiences you mentioned) for what is right for you, and not feel pressure or guilt. Nobody wants to have regrets, or look back on something and think they did the wrong thing, but ultimately we are all individuals and are 'in charge' of our own bodies and know ourselves like nobody else can. Treatments and surgeries are a choice, they are a choice that I would hope everybody takes if they are relevant to them based on the advice of the professionals, but nobody has to. Nobody is right and nobody is wrong - everyone is just as you say - different.
Hi Tili ! 😘
What you wrote is really helpful and just how I feel.
I just would like to say that we also make choices based on our own personal experiences. I have seen 3 people ( my father and two close friends) have all the prescribed mainstream treatment and they all still died.
So, I have chosen a natural path following surgery as I have very little faith in a mainstream path.
I realise that others have had different experiences which will affect their choices. I fully respect that.
I think in the end we maybe could just accept that we all need to do the cancer journey in our own way and just love and support each other.
Very best wishes
Charys, my god got it in one......were are the stats to say this lady has taken tamoxifen for 10 years she looks so well...however this lady hasn’t taken any medication for 10 years my god she does look well.
ALL KEEP SAFE AND WELL big hugs
My concern is that, for me, there has been little interest by my medical team in diet, exercise, toxins and stress.
Yes, and that was my feeling also - I had no advice on any of these matters at all, and mental health as a problem is picked up by the charities (like this one).
all the research shows it extends survival and it isn’t really optional in any scientific sense
The research isn't that simple, in terms of large scale stats, yes of course it makes a big difference. For some individuals, quite a percentage (I think 20 percent) it makes no difference at all. This is the point I was making about tailoring hormone medication in the future to those for whom it is effective, as at the moment there is no way of knowing who it helps and who it doesn't. There are women out there who religiously take the likes of tamoxifen and have recurrences, there are those who take it and don't get recurrence, there are those who don't take it and get no recurrence and those who don't take it and get recurrence. There are no markers to show which women it is effective for. It is because the medics don't know who it will and does actually help that everyone is urged to try it/use it for the timescale prescribed.
Hi our medics are under unbelievable stress and I guess they just do not have time for much beyond ensuring we get through the treatment treadmill. We will have to disagree on the medication issue - all the research shows it extends survival and it isn’t really optional in any scientific sense . good diet exercise etc which I do my best to follow Is important but my oncologist said that one of the best protectors of our bones is calcium so a vegan diet is not for me . Everyone must make their own decisions but our oncologists do not offer advice unthinkingly and without reason. Wishing you well
I agree with your view about possibly in the future tailoring the treatment in a better way for each lady.
My concern is that, for me, there has been little interest by my medical team in diet, exercise, toxins and stress. All probable causes of the cancer in the first place.
I worry that if these issues are ignored, ladies may pass all responsibility to the doctors and the doctors pills to heal themselves. The cancer came for a reason and it has been shown that less than 5% of cancers are hereditary.
For me the tablets were pretty awful. But I fully support whatever treatment plan anyone else wishes to follow. I just wish we could all realise that pills are not the only way forward
Thete is a mountain of good information for people out there about healing in a natural way. Whether that happens in combination with hormone blockers or not, it can only be a positive move, in my opinion.
Best wishes to you
Thanks I agree . By chance I found an old women’s health book yesterday pre-Tamoxifen and AIs days and it was really frightening. Two things I would say to women struggling.....lobby for a different brand (TEVA is closest to Femara and for me it has been so much better than ACCORD ) and do as much exercise as you can. I ended up with a frozen shoulder - excruciating. Could not walk far for months. After few weeks of physio On Saturday I managed to walk 7 miles and this has also improved my mild lymphodoema . Let’s hope future generations get an all-out cure but let’s not forget how lucky we are compared to 1980’s women . After exactly one year my side-effects are getting less so please try and stick with it everyone. - not everyone has this option
I would agree Susan - I have always urged anyone, despite my own experience, to try it and 'give it their best shot' (just as I did). There are loads and loads of people who don't even have once side effect, and those for whom side effects can be managed easily. Statistically of course it has made a big difference to recurrence, but for a few women at a trully terrible price. It is used as a 'one size fits all' medication, and I'm hoping that in the future there will be a way for subtle differences to be made to this type of hormonal therapy based on research into those who it will actually help.
I do feel for you, its a horrible situation to be in - truly awful. My experience was over 4 years ago now, but I still remember it like yesterday and all the fears and terrors from taking it or not taking it. It took me 6 months to feel as if I had recovered from the tamoxifen experience. You are in such a vulnerable place, I understand, and don't know which way to turn or what to do, devil and deep blue sea. Sometimes I think it really helps to find a medical professional with a really good knowledge and empathy with mental health issues. I first was referred whilst on tamoxifen by my GP to a locum oncologist, who told me to try evening primrose (!!!) and said it was life or death for me to take it or not take it (!!!), he literally had no idea how severe the mental changes were and how physically ill I was. (I had a list as long as my arm of physical changes but they were nothing compared to my mood and collapse of my mental health,). My second referral was to a doctor who recognised the severity of the problem and had an understanding that the women aren't just about their bodies, but their minds and wellbeing. I was advised at this point that the only way I could begin tamoxifen again was as an inpatient in a psychi unti. I would urge you to talk with everyone you can during the process of making decisions, there are a range of people from other patients (users on here) to medical professionals and nurses - all of whom have experiences and opinions. Some of those people might have suggestions for possible different treatment regimes, or other changes that made a difference to their ability to take tamoxifen. There is also the helpline number above, where I'm sure there will be people who can help you to process the issue you are having.
Obviously, as this is your second cancer there is extra importance attached to your decision, but please remember it is always YOUR decision and should be made without pressure or feelings of guilt, but based on good amounts of consideration and information. I personally found that once the active treatment was done and I was discharged, there was a lack of any real medical interest - and I was going through a hugely worse time than during surgery and radiotherapy. Side-effects, they are to be expected for many and for many they disappear over the following weeks, but there is a minority and that minority really really struggle. The trouble is nobody can tell you the 'risk' with taking it or not, there are no guarantees or certainities that can be applied. The majority of women want to feel ok and be able to take this medication, I am sure, but there needs to be support for those who find it a challenge and sometimes even more than a challenge and unbearable.
Sorry to hear that you had such a bad time . I did not mean to suggest AIs are a cure but there is no doubt that they are a game changer- you only have to look at the
statistics over last 30 years. That is all we have to go on. And I cannot help thinking if compliance was better so would be the numbers. Appreciate not possible for some to carry on still urging ladies out there to give it their best shot . Have switched brand and feel much more like my old self . 9 years to go hopefully
So please you are feeling better I have been in the same position as you, yo yo with Tamoxifen for a few months now, afraid to take them and afraid not to take them, quality of life is so important, My headaches are so bad at times, however unfortunately for me this is my second cancer, my oncologist tells me if my cancer returns again I will be in trouble ?? Didn’t ask what trouble. At the moment having a two weeks break (not sure if I’m going to continue). Keep well, big hugs....Tili x
You could ring the helpline number at the top of the website and I'm sure somebody would be able to talk to you about your feelings about hormone therapy. I am presuming that you have a breast cancer nurse, GP and surgeon who you could also speak to about the issue ?
We aren't just talking a few side effects here on my part, my life wasn't worth living - I was removed from them by my oncologist. Their exact words were 'you won't be here to have any life if you carry on taking them for any time longer'. I think there is an underestimation about how ill some people can be, and believe me I wish it had been possible to continue. Unfortunately, I had previously had a hormonal post natal psychosis, and was close to being that way again. A few side effects would have been a joy compared to my experience. I entirely encourage anyone and everyone to try them and stick with them if at all possible, but for some it isn't possible and that is the minority luckily. I actually personally felt dreadful stopping them, and very scared and vulnerable - but the balance of what needed to be done was very obvious. You say we are not 'cured' without them, well, to be honest - we aren't 'cured' with them either. They are only effective I believe for 20 percent of those who take them, the trouble is we will never know which 20 percent they are effective for and which they are not. There is literally no way of knowing. Ultimately, we are all individuals, who have to feel 'happy' with our personal life choices - 'happy' isn't the right word - we all need to feel psychologically comfortable with the decisions we make. Mine was the right one.
Hi, I would like to speak with a breast cancer volunteer about not using hormone therapy after a Grade1, clear lymph nodes, and a bilateral mastectomy. Katie 303 443 4296
I find this thread really worrying because it largely comprises ladies who decide for ‘quality of life’ reasons not to take AIs or tamoxifen. Believe me I totally get it.
I have a frozen shoulder arthritis in hands and lymphodoema - but I would NEVER stop taking letrozole. My late sister got breast cancer when she was 48. Lumpectomy refused chemo because told minimal risk of recurrence, After a year or so she stopped taking tamoxifen because of weight gain aches and pains etc .....three years after original diagnosis she got secondaries in her liver. She died a horrible death . If she had not stopped the tablets she might still be here. These tablets are horrendous because we have no cure for this disease unfortunately and they strip our entire body of oestrogen. We are not ‘cured’ without them . They can reduce the risk of recurrence by 50 per cent. Please please ladies do not stop taking your meds - we would not be asked to put up with their side-effects if they were unnecessary .
I'm so happy to read your post this morning.
I'm a 57 year old with grown up children. I do have the most beautiful grandchildren and would like to stay alive as long as possible.
However, I'm a person who follows a natural path mostly. I've been seeing my homeopath for the last 17 years and have found her medicine to far surpass anything modern medicine could do for me. And I trust her, which is so important.
I'm a very anxious lady and have been since childhood. My surgeon ( mastectomy 6 weeks ago) suggested my cancer was caused by stress. I instinctively feel she is right.
I took Anastrozole for 6 weeks and was psychologically in a big mess. I felt as if I did not wish to live, that I could not cope and wanted to die now. That may be a part of me but it is usually in balance. I'm normally a strong lady despite the anxiety. I became a violently sobbing suicidal mess on anastrozole. I also had physical symptoms. I took myself off them with the agreement of my oncologist. My homeopath sorted me out.
My oncologist wishes to put me on another tablet. I don't want to do this.
I believe that in these times there is a view that we must live on and on regardless of quality of life. As a carer I have seen lots of older people who take copious amounts of tablets and who, to me, did not appear to have quality of life.
Off the tablets, I am happy, strong, functioning well. Yes I am afraid of my cancer and what it may do. But I cannot live as a weakened and unhappy version of myself. I do not believe my family would benefit from seeing me like that.
I believe that the side effects of the anastrozole were not down to the tablet being a demon substance, do to speak. It was just the natural result of shutting down my oestrogen. Others seem to do better on these tablets. I also have had two breakdowns in my life and seem to have a pretty fragile fight/ flight response in my amygdala/ hippocampus. This did not help.
I realize many may not agree with me and that's ok. But, for me, I believe the best way forward is the way which makes me feel most peace and calm. I cant heal whilst anxious on another set of tablets I'm worried about.
Meditation, exercise, vegan diet, fresh air etc will be my way. Much to the despair of my oncologist, I'm sure. Hes a nice man who just wants to help me, I know.
But I have to walk this path in a way true to my heart. And enjoy each day I have to the fullest. However long that is for.
Sending love to everyone out there having to make these tough decisions. I wish the best for all of you.
Thank you Appletree for your interesting informative post. It included succinct pieces of information re the brain, new to me, which would have taken hours of research for me to winkle out.
I have agonised over the decision to begin endocrine therapy and although the B.C. team were quite alarmist about not taking it, my ultimate decision to decline was felt by the oncologist to be, in my case, (72yrs/early stage BC) perfectly reasonable. I understand though, that for more serious cases and for younger people, it would have been even more of a torture. The actual decision-making process gave me more anxiety than I have had for some years.
I have just finished radiotherapy which I hope will be the end of the matter. It is easy to choose quality over quantity if in your heart you feel confident that your diagnosis was relatively mild and there’s a good chance there will be no re-occurrence. My heart goes out to those who have a harder choice.
The only observation I have to make now is that, with the loss of HRT (at the BC diagnosis) all the menopausal symptoms & arthritis have returned plus a few extra ones. With every new twinge, every joint stiffness or any abnormality probably associated with age, I would have been wondering if it was the oestrogen blocker (had I taken it)!!
I cope with the menopause symptoms now, happy in the knowledge that it could be much worse. I sleep well and carry on an active live, fingers crossed.
Thanks to all the ladies who share their experiences, providing real time information and experience which cannot be understood by reading graphs and statistics.
I am trying to make the same decision. I already know the effects of losing eostregen when I tried to stop HRT a couple of times and now, waiting for radiotherably already have serious menopausal symptoms including arthritis. I would love to know what you decided and how are you progressing?
Dear Ali49, how you doing, just a little update from me to you had a long chat with the pharmacy who suggest I gave Letrozole another go, however after 5 days decided enough was enough feel really unwell and misable, quality of life is so important.
Hope you are feeling better and not in to much discomfort. Big hugs 👍
I’m interested to hear what you decided to do, been a few weeks since your post, I feel you pain!
Hi I’m new to the forum, so briefly Im a active 54yr old recently had lumpectomy for a stage 2 ER, 1 lymph out of 4 came back positive. Ive then had oncotype Dx Results which showed I was just in the medium risk zone, chemo was recommended but only 4% benefit to me so after looking into this further I declined on the basis that the risks involved & upset to mine & my families life far outweighed the possible benefits. So now I’ve had 23 sessions of radiotherapy and a zomita infusion & was prescribed Arimadex. After only 3 months on this med I’ve had to stop. I experienced severe pain in my shoulders, arms & hands, both my arms would go numb at night whilst in bed, not to mention the back, knee & ankle pain which was getting progressively worse, I felt like an old woman. It’s been 2 weeks this Wednesday since I took them and I’m still not back to normal, shoulda are improved but my hands are still very stiff & painful, apparently it will take 5 weeks to get out of my system.
So Having read this thread & several others regards to side effects I am seriously considering not taking the hormone treatment at all, they all appear to have horrid side effects which seriously effect my quality of life, really, what’s the point in living longer if you feel like crap & can’t walk.
Think I’m going to look at my diet, lifestyle & take my chances folks.
My situation was different to you in that I was pre-menopausal and put on tamoxifen. However, it caused some of the very same symptoms you describe - including suicidal depressive thoughts. I was taken off it 'for a break after only 6 weeks of having taken it. I spent weeks 'weighing up' umming and ahhing, and was as scared to take it as I was to not take it. I eventually saw an oncologist who said that quality of life was very important, and 'ok'd me' not taking as I was having such a poor life quality and I was considered 'at risk' of personal harm.....BUT there had been a few before that oncologist who were pushy about continuing. This was over 2 1/2 years ago, and I never went back on the tamoxifen. These things are all a personal choice, and its a tough choice when you feel damned if you do and damned if you don't - I tell you though - I dont think I would be here today if I had continued on tamoxifen. So, take your time in considering if you want to try again or not......your life quality IS important. xx
Thank you for that information. I'm shortly due to start taking an AI but feel that I'm unlikely to take them for long because the side effects are either things that I already struggle with or things like cognitive function which I'm not prepared to lose.
I've drastically changed my diet, stopped drinking alcohol and have lost nearly 3 stone and plan to continue cutting my oestrogen levels naturally. At 68 and with no family, my quality of life is too important to me to risk losing it for the sake of living a few years longer. When I had breast cancer before (at 37) I might well have made different choices but I can see no point in coping with the side effects I've read about for the next 5 or 10 years, just to live into my 80s, probably in bad health with some problem or the other.
For me, the choice is simple, as soon as I start having any more than minimal side effects, I'll stop.
I'm very sorry to read you are having such a horrible time, Mammycatx Whether or not to take endocrine therapy is a dilemma for most of us.
As the Aromatase Inhibitors effectively block production of oestrogen altogether, we have to face the consequences of oestrogen depletion as long as we are taking them. The Electronic Medicines Compendium states for Exemestane: ‘Most adverse reactions can be attributed to the normal pharmacological consequences of oestrogen deprivation.' Letrozole and Anastrozole have much the same action. All the Aromatase Inhibitors are notorious for causing cognitive problems, as well as severe joint and muscle pain and, in some patients, severe depression.
Oestrogen depletion in itself can have damaging effects on our bodies, including our cognitive abilities, so it's a matter of deciding where our priorities lie. Are we so afraid of cancer that we subject ourselves to a miserable life with debilitating health issues, or do we take the risk of a cancer recurrence in order to have quality of life whilst we have it?
There are two main oestrogen receptors, ER𝜶 and ERβ, which are expressed throughout the brain. In general, ERβ is expressed at high levels in the hippocampus and temporal cortex, whilst ER𝜶 is expressed at higher levels in the amygdala and hypothalamus. Multiple studies have indicated that AIs and Tamoxifen can cross the blood-brain barrier and enter the brain. All AIs inhibit both ER𝜶 and ERβ whilst Tamoxifen has a mild stimulatory effect on ER𝜶 and completely blocks ERβ activity.
The information on Tamoxifen in the Electronic Medicines Compendium suggests that adverse effects are closely related to the drug's effects on the two oestrogen receptors.
Quoting from a research paper (downloaded from NICE) published in 2014, several studies have reported the negative effects of Tamoxifen on cognitive function. Results indicated that patients in the Tamoxifen group were significantly impaired and performed significantly worse on various tasks involving memory and information processing. The study demonstrates that breast cancer patients taking Tamoxifen have several decision-making impairments. The findings may support the idea that Tamoxifen resulting in cognitive changes plays an antagonistic role in the areas of the brain where oestrogen receptors are present, including the prefrontal cortex (responsible for higher level functioning), the hippocampus (responsible for factual and episodic memory) and the amygdala (controlling fight or flight and emotions). There are quite a few other papers making very similar observations.
NHS Predict Version 2.1 is generally used by oncologists to give us some idea of our likely lifespan with or without endocrine therapy. Unfortunately, it only takes into account the pathology of our cancer, our age and how our tumour was detected. It doesn't allow for lifestyle, co-morbidity, or give any guide as to what might kill us eventuallly, or how far our lives might be reduced by the treatments themselves.
I discussed all this recently with a friend of mine who is a very experienced doctor who has worked in public health for many years at a senior level. These were her observations.
Cancer treatment efficacy is always measured in terms of 5 or 10 year survival (as a proxy for cure) whereas for many other interventions we look at QALYs (quality adjusted life years) which takes quality of life into account. We have conditioned people to aim for cancer elimination almost at any cost as it is assumed that living with it is too fearful. In reality it is no different to any other chronic condition that people may live with. I think this has come about because the big advances in cancer treatment have been with childhood cancers where aiming for cure is entirely reasonable and parents are often accepting of short term distress for their child if they have a good chance of achieving a normal healthy life post treatment. Priorities and decisions are very different at the other end of life.
Hi Ladies x I had a double mastectomy with reconstruction in November 2014. I started on Letrozole and was almost 4 years on it. The side effects started early on - hair loss, hot flashes and joint pain. But instead of easing they got worse, building up until this last year they became unbearable. I was also suffering from really bad anxiety with constant tummy churning - basically feeling a constant low level adrenaline rush. I got to the point where I was even having suicidal type thoughts. When I say suicidal I was not planning anything - but I was constantly thinking that I don't want to be here 😞
It was horrible - as you all know, when you've gone through BC you really should be making the most of every precious moment!
Anyway I recently had a 2 month break from the Letrozole. For the first 4/5 weeks there was no diffence - then suddenly I felt like a weight was lifted from me! There was such a difference - I felt so well, so 'normal'!!
Unfortunately my consultant seriously recommended me to continue the AI's for at least another year - which will bring me up to the 5years. He prescribed Exemastane and I've been on these for the last 6 weeks - and I'm now starting to feeling awful again. It feels like the flu - I've got constant nausea, acid stomach, cramps, stiff body and I'm absolutely exhausted all the time. I can also feel my mental health going downhill again.
I desperately want to discontinue taking them. I think quality of life is so important and I just want to feel 'well' again.
But like you I'm too scared to stop because of the risk of recurrance 😞 x It's a hell of a dilemma!
Hi Ali, I've been on Letrozole for two years, and I have had to do a bit of figuring out with it all. With advice from my Onco I found a brand that suited me, and my joint pains eased immediately. I have had a rest from it to recover from aches. I take it with Palbociclib , but not together as it makes me feel drunk! So Letrozole at night and get over sweats and aches. Hit shower in morning to get me going, plus stretching exercises. Yes, two years after op I still do them! My consultant radiologist advised glucosamine tablets, but I don't think they were effective. I have discovered TaiChi is my saviour. Lots of movement, like stretches plus meditation. I really sympathise with you, and know you won't have done it lightly. However, as I have secondaries in my lungs I will certainly be pursuing all avenues and trying to stay on my regime. The very very best to you. X
My onc put me on tamoxifen because I have osteoporosis of the spine and he said that letrozole is very harsh on the bone density, and I am post menopausal. I wonder if you can change to that, I know it has its problems as well as it can thicken the lining of the womb etc, but it might be worth checking with him to see
just know now how you are feeling, I have to just stopped taking Letrozole after 3 years and feeling so much better, however not sure if I have done the right thing.
God luck, big hugs xxx
I am wanting to stop my tablets after nearly 2 years as I feel like an old woman with hip and back stiffness that just seems to get worse. I am 71 and quite active playing golf, gardening etc. I am wondering if my body will return to normal if I stop.
It' Emily here from Breast Cancer Care.
It sounds like you have a difficult decision to make, and there's quite a lot playing on your mind in terms of both risk and side effects. If you'd like to speak to a Breast Cancer Care volunteer over the phone who has made a similar decision, then this is something I could arrange for you.
Feel free to send me a direct forum message with your name and number if you think this would be helpful, and I can give you a call to talk through.
Sorry that you havent received a response yet. Hopefully someone will be along shortly to share their experience with you. In the meantime you may find it helpful to speak to one of our specialists on the free Helpline, 0808 800 6000. Alternatively you may prefer to post a message directly to our nurses in the Ask Our Nurses area of the Forum.
Digital Community Officer
I had an early grade 2 stage 1 ductal breast cancer, no lymph node in volvement (3nodes removed) in 2014. Lumpectomy, radiotherapy and letrozole. I have moved into moderate osteoporosis now, hair thnning on top of head and numerous ligament issues, buttocks, shoulder, elbow, coccyx. I changed to Exemestane a month ago after a month break from treatment. I am tempted to discontinue and hope for the best. I have read the Predict research paper and identified my risk. It seems that A.I's give me 1% greater survival over a 5 year period and 2% if I take it for 10 years. Problem is, I can't figure out whether this is such a small risk that I could come off it or if 1 in a hundred is a big risk. I am 66 years old now. How do other people make this decision. Sometimes I just want to get of the meds and then I think, well better to have arthritis and osteoporosis and thin hair at least I woud still be alive and not dying of cancer. How do others make the decision - one way or another. Medics simply say that although there is only a low risk of recurrence, and low benefit from treatment, breast cancer is so unpredictable that you cannot be too sure... what to do?