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the risk of stopping hormone therapy.

21 REPLIES
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 👍

 

 

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
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! 

Member

Re: the risk of stopping hormone therapy.

Do you have a specific diet you follow?
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. 

Member

Re: the risk of stopping hormone therapy.

Charys thank you too xx
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
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

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.

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?
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 Smiley Sad

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 Smiley Sad x It's a hell of a dilemma! 

 

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!
Community Champion

Re: the risk of stopping hormone therapy.

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

Community Champion

Re: the risk of stopping hormone therapy.

Ali

 

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

 

Helena xxxx

Member

Re: the risk of stopping hormone therapy.

Hi Tili, i have been on Letrozole since April and i feel like i am slowly becoming crippled! It was my legs that pained first but they have eased a little. However i am in absolutely agony with my shoulders. My right shoulder, whoch is my surgery side is the worst. I cant fasten or undo my bra, i cant dry my back with a towel or put my coat on without help!! I said to my hubby tonight that i am even finding hard to wipe my own bottom!!!

I am 51 and have 3 children. I have totally underestimated the effect of every day pain on peoples lives!

I had a bone scan 2 weeks ago wh8ch showed i have arthritis in both shoulders. They say its not letrozole BUT i never had any problems with my shoulders before!!

Tonight i finally read the leaflet with the letrozole and there it is in black and white that a less common side effect experienced by 1 in 100 people is 'joint stiffness (arthritis)'. I think i am going to have to stop taking it as it really is impacting on my everyday life. I am scared to make this d3cision and totalky understand how you feel xx
Member

Re: the risk of stopping hormone therapy.

Hello Maryenuts,

 

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

Member

Re: the risk of stopping hormone therapy.

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.

Member

Re: the risk of stopping hormone therapy.

Do sorry JAH
Got complete ly mixed up, It's Binty again replying to you said Emily, doh
Got fuzzy brain aswell as all the symptom except hair loss, take care very best wishes , Bonty x
Member

Re: the risk of stopping hormone therapy.

Dear Emily
I am in the same position, I did answer but it has not shown up don't know what happened.
I have lobular cancer 2 lumps removed and then right mastectomy last May.
Started with Letrozole and was so stiff and achey could hardly walk some days, but when it made me so low and weepy was told to stop and have a break.
So was given exemastane after about a month started October last seemed ok at first schedule in hands and shoulders thought I would cope but I 'm off them now for almost a month and feel better think it's still in my system but now I have that awful decision to make. Surgeon says nine if my symptoms are relaty to medication but I know they are.
I'm 65 and until this was very good for my age, now I feel like an old lady the thought of feeling like this for another 4 years is depressing and I feel depressed now.
I have joined a gym but only use the treadmill as I still have fluid around site if op and it seemed to be increasing.
Exercise is as good as the tablet s Oncologist has told me but how much, can I take that risk, it's so difficult so I completely understand your situation best wishes, x
Member

Re: the risk of stopping hormone therapy.

Hi J_A_H

 

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.

 

Best wishes

Emily