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the risk of stopping hormone therapy.

59 REPLIES 59
Martina
Member

Re: the risk of stopping hormone therapy.

Saw similar percentage of risk reduction if I took hormone therapy 1-2% and that was one factor in deciding not to take it and to focus on risk reduction by changes to my diet and exercise levels.

Cumbrian Lady
Member

Re: the risk of stopping hormone therapy.

Hi Bonty

I have only been on Letrozole for 4 months but have sure noticed the difference. I am 64 and an active 64 (well I was) these days my legs and feet feel like they are made of wood, sometimes they feel as if they do not want to move at all. I have also noticed my feet have become clumsy (well I know it's me that operates them) but you know what I mean they are slow to respond so I end up bumping into things, or knocking them over. The first thing in the morning is the worst I have to be so careful in case I fall down the stairs.
I am feeling depressed I can accept what might or might not be with my cancer - but this seems so unfair and an added penalty to an already difficult situation.
I have been told I need to stay on them for 5 years, if this carries on I will be a cripple long before then.
I do like walking as well as gardening but it ALL seems like a real effort of late.

Sad all in all.
Poppy xx

SueLSE
Member

Re: the risk of stopping hormone therapy.

Hello Rose, long time since I logged on and not sure if you are still active on here. But to any ladies still following this thread I thought I’d do an update.

I had my knee replacement in February and have recovered really well, but my hip went from bad to worse, and to cut a long story short, I am having a hip replacement on 26th June.

Rose, you asked me to let you know what I decided about tamoxifen. Well, having been off all hormone therapy for 4 months, I am still very reluctant to return to it. I will see if my hip solves all my joint problems and consider again. But having had nothing but pain in my joints since shortly after starting letrozole towards the end of 2019, I really don’t want to risk causing myself further issues on that score. I just long to feel I can be active again, and enjoy a walk.

I emphasise again, this is MY choice and is not right for everyone. Quality of life is just more important to me than quantity, and I can live with the risk of getting breast cancer again, as long as I am not living my life in pain, as I have now for 18 months.

I would be I interested to know if anyone else has made any decisions on their hormone therapy? Sue

Moiramomap
Member

Re: the risk of stopping hormone therapy.

Thanks for the hugs Tili - I just reached 70 in December - some days I feel like 92!!!  I'm not ruling out the drug - yet!!  

You take care too xx

Tili
Member

Re: the risk of stopping hormone therapy.

Moria,

Please try to take the medication, everyone react different.....hopefully it will work and you will be fine, thinking you are probably a lot young than me.

Good luck, keep safe. Big hugs Tili 👍

Moiramomap
Member

Re: the risk of stopping hormone therapy.

Thank you so much Tili for your reply - I think we were brought up in an era when you didn't ever question people in authority and put your trust in whoever it was, doctor, dentist, policeman etc.    So for me to question this was something.   I just feel the hormone tablet has robbed me of me - I feel tired and grumpy with it all and usually I'm full of enthusiasm going at things 100 miles an hour.    So once I get these results and hear from the oncologist I will make my decision whether to stop Exemestane for three months and see how that goes - stop it completely - or try Tamoxifen.   Oncologist told me I could get endometrial bleeding and there was a higher risk of stroke on Tamoxifen which didn't exactly fill me with confidence.   

Stay safe, stay well and stay happy - much love

Moira

Tili
Member

Re: the risk of stopping hormone therapy.

Hi Moria,

So sorry your not feeling your best at the moment.....good news your able to get a blood test.

i decided to stop all medication, have had a tough time over the past 5 years with breast cancer in both sides, the left was a mastectomy, with Letrozle for 5years (managed 3) right side lumpectomy, radiotherapy followed by tamoxifen....did take my medication for a few weeks, after much discomfort again, and thinking I cannot go through all this again.

Feeling very well and happy at the moment 😊 life’s for living, taking one day at a time, as my oncologist said the door is always open for me.

I am 73, have a lovely family, good life and need to enjoy.

Take care, please keep me posted, lots of love Tili 🤗🌈

 

 

 

 

 

 

Moiramomap
Member

Re: the risk of stopping hormone therapy.

Tili - thankyou for your kind reply - can I ask you your age!   

I am having my bloods checked and GP is writing to oncologist - so will see where that goes - I feel so supported on this forum though - I might take a longer time off the drug and then decide.   How long did it take for you to feel more like your old self - I felt like I've lost my old self way down the road and I want her back 🙂   

Love

Moira

x

Moiramomap
Member

Re: the risk of stopping hormone therapy.

Hi Sue and thanks for your response. 

I'm similar stats to you - 78% change of it not coming back in 10 years using surgery, chemo, Herceptin, bisphosphonates and hormone tablet.   There's no guarantees though that I won't be in the 22% - I guess there's no guarantees in life.    Perhaps we are feeling it more just now because of all the other stuff we are going through - I know it has played on my mind more because I'm usually busy and out and about and doing different things - although these pins and needles are impacting on my music playing, crochet - even holding the phone is a pain...     It seems like overall, this is the worst part of the therapy and some poor folk are on it for ten years.    

Having spoken to my GP yesterday - I am going to have full bloods done to rule out any underlying health condition - then she is writing to the oncologist who I find quite dismissive - I appreciate he is busy and there are many girls with worse diagnosis than me - but I still want to be able to discuss my treatment without feeling like I'm a pest.    So we shall see - might take a 3 month break and then decide after that - GP said not to do anything in the meantime until we have things checked.   

My bisphosphonates are intravenous but have been delayed by 6 months - so two to go - April and then October this year - I felt pretty yucky a few days after the last one - but have osteoporisis in my lower back so thought it better to have them.  Nurse on Breast Cancer Now says the Tamoxifen is also more helpful to bones unlike the Aromatase Inhibitors like Anastrazole, Exemestane etc.   

So thanks for getting back to me - it's a dark dismal day in Aberdeen today - trying to snow but failing up to this point - wish it would just do it and get it over with - the spring bulbs are through tho so that's something to look forward to - take care xx

 

Moiramomap
Member

Re: the risk of stopping hormone therapy.

Rose

I read your post with interest - I too was fit before my op and came through the surgery well - chemo was yucky - only had 3 - but the Herceptin wasn't too much of a problem although it did affect my heart and I'd to stop for one cycle that is all OK now.   The bone infusions aren't fine but I've only two of them left to have - should have been April/Oct 2020 finishing this April but Covid delayed it so it's October 2020 - April/October 2021.   

I haven't felt terribly well supported by my oncologist - he was very effusive and charming when meeting him prior to treatment but very dismissive on my appointment after that.    I almost changed onto Tamoxifen last summer as I was humming and hawing about the pain then and he barked at me "Do you have a womb" - I said yest - he said "well you can get endometrial bleeding with Tamoxifen and there's a higher risk of stroke".  Well thanks doc for those kind reassurances.   I tried 6 weeks off the tablets last summer but it wasn't long enough I fear - he was ready to just give me the Tamoxifen but then I decided better the devil I know........   and here I am envisaging a further 3 years of this.  

 

I have to say the most wonderful support I have had has been from Breast Cancer Now and the Someone Like Me Service.   They get it - you get to speak directly to a breast care nurse and they know what they are talking about.   Armed with the information from them I have felt confidence in moving forward and discussing that information with my local breast care nurse who has liaised with Oncologist.    

 

Spoke with my GP yesterday and I am going to have bloods to rule out any other underlying reason for the pain - you wouldn't believe a little white tablet could cause so much trouble.   She is going to write to the Oncologist as I don't find him approachable.    Then I may take a 3 month break and see how that goes before decided if I'm going to change or endure.    

This is the first time I've used the forum and I have found it too to be a valuable resource with so many people who are going through the same thing which justifies it as no-one who hasn't gone through this gets it.    So thanks so much for your input - I feel much supported by everyone's replies here - thanks and I do with you well and happiness with your new grandchild.   You need to be fit for that eh!   Take care for now xx Moira

 

SueLSE
Member

Re: the risk of stopping hormone therapy.

Greetings to Rose and Tili and thank you for your posts. Of course it’s ok to join the conversation, that’s what it’s all about, mutual encouragement and support and sharing experiences. I would say that probably the only people who write on threads like this are those who have experienced side effects with hormone therapy, there must be thousands who tolerate it well, so I reiterate, I don’t want to put anyone off taking what is recommended. But for me, the fear of breast cancer returning is far less than the fear of living in this pain which I have for over a year.  I actually felt quite fit and well whilst going through two lots of surgery in 2019, lumpectomy and mastectomy. I was even swimming in the sea within 2 weeks of my mastectomy, and was walking the Cornish Coastal path shortly after I complete radiotherapy, and building up my health and strength. So I am doing whatever I can to get through these pains. If after I’ve recovered from my knee replacement, and sorted my hip out. I can get back to some sort of active life, as before. I will personally be very reluctant to go back on any sort of hormone therapy. For now I can only live a day at a time and make decisions as and when it is right for me. If my Maths is correct, and I have a 66% chance of survival without any further treatment, but would be 87% without the breast cancer factor, then I suppose I have a 21% chance of dying from bc in the next 10 years (well  8 1/2 now) - which means if have a 79% of NOT dying from breast cancer, and I’ll be 76 by then anyway! 
I wish all of you all very best and trust you’ll make the right decisions for you. Hugs all round. Sue

Tili
Member

Re: the risk of stopping hormone therapy.

To all the lovely ladies.

I’m thinking of you all, and what we have all been through, however what I am going to say is my personal choice.....we must all take advise from the experts or are we the expert when it comes to our body’s. The passed 5 years I have had breast cancer twice, however have taken the decision, after lots of discomfort not to taken Letrozole or Tamoxfine, 

I have to say the outcome is I’m feeling much better, more like my old self, hopefully taken the right way forward for myself.

Be happy, keep well.  Take one day at a time.

Big hugs from me to you all. Tili 🌈🌈

 

HappyVibes
Member

Re: the risk of stopping hormone therapy.

Hi Sue

I hope it’s ok for me to join the conversation here, I’m fairly new to the forum so not totally familiar yet with how it all works.

I was diagnosed with mixed classic Invasive Lobular Carcinoma and Invasive Ductal Carcinoma in September last year. ER+ HER- and had a lumpectomy and SNB in December. The delay in surgery was because of the need for various other scans and waiting times for results. 

Because of the delay I was prescribed Letrozole to help prevent spread while waiting for my surgery. I took it for 5 weeks before making the decision to stop, without consulting my breast care team. At that point my surgery was only a week or so away. In that short period, only 5 weeks, I found my mobility severely diminished because of pain and stiffness in my joints and on the day I decided to stop taking it I had struggled to get up the stairs. I must state here, that I had had a total knee replacement in September just before my cancer diagnosis, so I wasn’t as fit as I normally am, but nevertheless, before taking the Letrozole I was doing extremely well in my recovery, and back to walking normally, doing my yoga and generally feeling like I was well on the road to full fitness. I certainly had no problem getting up and down the stairs. My physio said he rarely sees such a good recovery at that stage so I was feeling pretty pleased with myself. Then Bang! The effects of Letrozole kicked in and I suddenly felt like an old woman, not just because of the painful stiff joints but the awful lethargy too. I’m not a spring chicken at 63, but I am quite fit and active and don’t see age as a barrier to anything. I started a small business just before I turned 60 which kept me busy and stimulated mentally. 

I’m sorry for waffling on, I just wanted to give some background. Two weeks ago I had to have a Full Axillary Clearance as one of the two sentinel nodes biopsied was positive for cancer. I’m due to see my surgeon tomorrow for the histology results and presumably a discussion on my treatment plan, which is why I found myself on this thread. If I don’t need chemotherapy as the next step, then it will be radiotherapy and hormone therapy, so I’m trying to gather as much information as I can on Letrozole and its side effects. I understood exactly why you have taken the decision to decline it, and I’m trying to weigh up the evidence of efficacy in preventing recurrence against the diminished quality of life. My first grandchild was born 4 months ago, he may be my only grandchild, and I want to be involved in his care when my daughter goes back to work. From my experience so far with Letrozole, there is no way I’d be able to look after a baby/toddler, and quite aside from that, do I really want the last decade of my middle age to be ruined by these dreadful side effects, then find myself approaching the elderly age group with the many health issues that can possibly arise then.

Your post was very interesting and helped calm my racing mind at the moment. I want a clear head when I’m referred on to the Oncology team so that I can present a valid case for declining the hormone treatment, and your perspective on this has helped a little in clarifying the issue for me. Thank you.

I’m very interested to know what you decide regarding Tamoxifen so I hope you continue to post here.

Sending you my best wishes, Rose.

 

SueLSE
Member

Re: the risk of stopping hormone therapy.

Thanks Moira and (virtual) hugs to you too. As I said, I would never encourage anyone to stop the hormone therapy, but sharing experiences can help one to come to their own decision. On Predict I have a 66% chance of survival for 10 years without hormone therapy, or 72% with (at 67 my survival chances would be about 87% without the breast cancer factor). Chemotherapy would have brought that up to 75% but I declined that extra 3% as I didn’t feel it was worth all the effects of sickness and hair loss over 6 month period, and with COVID now, I am even more pleased I did. I also declined biophosphonates as they couldn’t offer me the intravenous type, only daily tablets which involved too much hassle first thing every morning (no first thing cuppa, sitting upright for an hour....that’s not life!). So you can see I’m good at refusing things! 
I had 11 great years after the first diagnosis and stopping tamoxifen, including welcoming 4 grandchildren into the world and enjoying their company and being involved in childcare regularly. I may have avoided a recurrence if I’d stuck with the hormone treatment, but at what cost? I’m fortunate enough to have a generally laid back and positive outlook on life, so I will accept the risks and the consequences. But I will think again once I’ve sorted my awful joints out. I was offered a change to tamoxifen, so I may try that.

Moiramomap
Member

Re: the risk of stopping hormone therapy.

Well Sue - you've certainly had a double whammy and more - it is good to hear your experience - I was 68 when diagnosed in 2019 - had mastectomy, three chemos - Herception and bone infusions - Zometa - still having them which has been delayed due to Covid.    So I have three years to go with tablets and was considering changing to Tamoxifen which Breast Cancer Now says offers more protection to bones.    I have osteoporosis in lower back and pre ostopeina in others - wondering if that could cause the pain - I've tried everything - my feet were terrible last summer - came off Exemestane for 6 weeks (not long enough I fear to know if it's beneficial) Oncologist said he'd put me on Tamoxifen but I decided to stick with the devil I knew - now suffering so much pain, pins and needles - spent a fortune on chiropractic and orthotics (which have helped my feet very much) tried cbd oil which didn't do anything so now take paracetamol at bedtime and in the early hours when I waken and that is keeping me sane and letting me sleep for now - fed up of the whole thing but the fear of stopping is big - like you this hormone is 6% of the overall package of treatment.  Speaking with my GP on Friday to discuss the whole sorry saga - feel I've had to go on a research project all my own - found in Carpal Tunnel Syndrome website "can be caused by Breast Cancer drugs - Exemestane and Anastrazole - I feel I've been trying to be heard but really nobody coming up with anything conclusive.   Tired and fed up but will soldier on as I'm not a quitter - I'm sorry you are limited in your walked as this has been my sanity during lockdown - I hope you find improvement with your knee replacement - it may well help your hip once you're not trying to avoid the pain in the knee - thanks for sharing - I wish you well - stay safe xx

SueLSE
Member

Re: the risk of stopping hormone therapy.

I’ve not logged on for a while, but just found this thread. Had a small lobular cancer right breast in 2008, when I was 54. Lumpectomy, radiotherapy and tamoxifen. All was well for 2 years, when I started persistent post menopausal bleeding. Investigations pointed to tamoxifen, so with the consultant’s agreement, I stopped it. 2019, bilateral cancer, 46mm lobular in right breast, 26mm ductal in left, one lymph node affected. Had mastectomy on recurrent side, lumpectomy followed by radiotherapy to breast and lymph nodes on the other side. I was challenged more than once by medics as to why I had stopped tamoxifen. But I couldn’t just have carried on bleeding like that!

I started letrozole in October 2019 and all seemed well. I’ve always had twinges of pain in left knee since having an accident when I was 18. By January 2020, the pain was severe. Osteoarthritis was diagnosed and I am having a knee replacement next week. By August 2020 I was also having severe pain in my right hip, which had never been a problem. Osteoarthritis was also diagnosed in that, and I am in the process of referrals. 

In November it dawned on me that these problems had only risen since starting letrozole. I had a telephone appointment with oncologist and agreed to have a break to see if it made a difference. By beginning of January I couldn’t in all honesty say I’d noticed much difference, so I restarted it. Spoke to oncologist a week ago and she was pleased I’d restarted and said I should stay on it for 10 years. But now I’ve realised the pain in my hip has got much worse since restarting letrozole.

Statistically, from the Predict tool, letrozole offers me a 6% benefit. But like others of you, I can’t face the thought of living like this, with constant pain, for another 9 years into my late 70s. I used to enjoy 5-6 mile walks, now I can barely manage 1 mile, and that’s with sticks and strong painkillers. I wake up at night every time I turn over.

So yesterday I stopped it again. I’m going to get through my knee surgery, assess my hip (which may improve once my knee is properly aligned) and think again about the risk/benefit balance. Incidentally my blood pressure was high last week. Already that has come down, and I see high BP can also be a side effect of letrozole. But it’s too early to say, and I was a bit anxious last week (which is not normally me).

I wouldn’t want to discourage anyone from taking it, but just to share my experience. After having a recurrence, it is a double whammy when thinking about stopping it.

Moiramomap
Member

Re: the risk of stopping hormone therapy.

Yes it was 

Charys
Community Champion

Re: the risk of stopping hormone therapy.

Hiyer,

 

Was this addressed to the original poster of the message ? Just wondering.

Moiramomap
Member

Re: the risk of stopping hormone therapy.

Hi there

You may no longer be on this forum but I'm at the stage you were stating here in October 2018 - I'm so tired of body pain and feel like an old woman - just turned 70 in December and two years in with Exemestane - onc said he would move me onto Tamoxifen last August - however, I just wanted to try 6 weeks without tablets to see if that helped - not a lot of difference but over the last few months the pain and body stiffness, pins and needles in my hands etc has been getting me down.   Reading a lot of the messages on here we are no better on whichever one we try - so I'm wondering - did you stop?

Charys
Community Champion

Re: the risk of stopping hormone therapy.

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 ! 😘

SuzyJane20
Member

Re: the risk of stopping hormone therapy.

Thankyou Charys

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

Suzy x

Tili
Member

Re: the risk of stopping hormone therapy.

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

Charys
Community Champion

Re: the risk of stopping hormone therapy.

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.

 

Susanmanchester
Member

Re: the risk of stopping hormone therapy.

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 

SuzyJane20
Member

Re: the risk of stopping hormone therapy.

Hi Susan, 

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 

Suzy

Susanmanchester
Member

Re: the risk of stopping hormone therapy.

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 

Charys
Community Champion

Re: the risk of stopping hormone therapy.

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.

Charys
Community Champion

Re: the risk of stopping hormone therapy.

Hiyer Tili,

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.

 

Susanmanchester
Member

Re: the risk of stopping hormone therapy.

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 

Tili
Member

Re: the risk of stopping hormone therapy.

Hello Charys,

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

 

 

 

 

 

 

 

 

 

 

Charys
Community Champion

Re: the risk of stopping hormone therapy.

Hiyer Katie,

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 ?

Charys
Community Champion

Re: the risk of stopping hormone therapy.

Hiyer Susan,

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.

katieg
Member

Re: the risk of stopping hormone therapy.

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

 THANK YOU

Susanmanchester
Member

Re: the risk of stopping hormone therapy.

Hi all

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 . 

SuzyJane20
Member

Re: the risk of stopping hormone therapy.

Dear Appletree 

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.

Suzy xx

 

Wendyphillips
Member

Re: the risk of stopping hormone therapy.

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.

Tili
Member

Re: the risk of stopping hormone therapy.

Thank you, feeling better already xx

Wendyphillips
Member

Re: the risk of stopping hormone therapy.

 

J_A_H

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?

Tili
Member

Re: the risk of stopping hormone therapy.

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 👍

 

 

Ali49
Member

Re: the risk of stopping hormone therapy.

Hi Di R. I have decided not to take any aromatase inhibitors anymore. I had a good talk with my Onc and breast nurse before making my decision though. My original break from them was due to how bad my shoulders were - I thought that the pain and discomfort from them was causing me to feel low. However, 8 days after stopping them it was like a huge black cloud had gone from me. I hadn't realised that it was the Letrozole causing this til I stopped them! After explaining this to my oncologist she said my cancer was small, caught early, 5/8 ER+, there were no lymph nodes involved and I had a complete response to chemo - so the benefits of letrozole were minimal. She said it would be perfectly reasonable not to take them although she said there were no guarantees either way. I then discussed things with my BCN, who is always my voice of reason. She said I could try a different tablet and see how it went but she also said my onc would have insisted I take them if she thought it was that important. I realised then that the thought of going back on them filled me with dread and my decision was made. It was completely my decision though and I will not worry about it. I have my last Herceptin injection , as my cancer was also Her2+, on 27th December and that ends 15 months of active treatment for me - please God that will be it.
Before you make any decisions I really think you need to go and speak to your onc and BCN too. Tell them exactly how you are and listen to what they have to say. At the end of the day it is your life that you have been fighting for and you certainly don't want it to be a thoroughly miserable one.
Good look Di and let me know how you get on xxx
Di.R
Member

Re: the risk of stopping hormone therapy.

Ali49

I’m interested to hear what you decided to do, been a few weeks since your post, I feel you pain! 

Di.R
Member

Re: the risk of stopping hormone therapy.

Do you have a specific diet you follow?
Di.R
Member

Re: the risk of stopping hormone therapy.

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. 

Ali49
Member

Re: the risk of stopping hormone therapy.

Charys thank you too xx
Ali49
Member

Re: the risk of stopping hormone therapy.

Appletree tjank you so much for your post. I have been off letrozole for 5 weeks. My shoulders are slightly better but after a week I felt likes huge black cloud had been lifted off me. My onc said it's acceptable not to go back on them and that is really what I want! Your post has really helped and yes, quality of life is everything xx
Charys
Community Champion

Re: the risk of stopping hormone therapy.

Hiyer,

 

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

kathyx
Member

Re: the risk of stopping hormone therapy.

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.

Appletree
Member

Re: the risk of stopping hormone therapy.

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.

 
So, it is very much down to a matter of personal choice. Do we do as the oncologist tells us and suffer debilitating health issues in order to just stay alive, or do we treat quality of life as a priority?
Mammycatx
Member

Re: the risk of stopping hormone therapy.

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! 

 

Treeze
Member

Re: the risk of stopping hormone therapy.

For me at the present my feet and legs have less pain but its transferred to my wrists and elbows. They hurt so much that I cant carry a handbag or do any movement without pain.Starting to get clumsy and drop things, cant unscrew bottles etc.As I'm a cleaner you can imagine how difficult it makes things!