Thoughts on skipping hormone therapy

[misswoof-88]

Sounds like you are having a rough time with a less than sympathetic onc

Acid reflux is a classic symptom. I’m still getting it and have done since I came off of hrt last June. It ramped up dramatically after being in the anastrozole, but has calmed down again now. If I eat too much rich food, it gets worse but it’s still not as bad as on AI’s.

The insomnia, for me, was really hard to deal with. And if you can’t get a good nights rest, it makes all the other niggles so much worse too. You have my sympathies.

Re you estradiol pessaries: stand your ground on that one. I had this conversation with my own oncologist and she told me that all the evidence points towards vaginal estrogen as being safe for us. It’s so localised that it doesn’t tend to interfere or enter the bloodstream in a way that would affect your letrozole. And if it’s helping down below, I’d say there’s another conversation to be had. Either that or they need to prescribe you an alternative that will give you some relief- jeezalou! You have enough to be dealing with already.

I was lucky that my onc was fairly co-operative, up to date with new data/trials/ and open to trying stuff to help with SE’s.

But, my situation just became intolerable and even she said that she classed my reaction to anastrozole as (what they term) ‘an unacceptable level of toxicity’

If you think you may be heading the same way, keep badgering them, particularly as you have rheumatoid arthritis- your inflammation response might be an issue You don’t need that on top of everything else.

Couldn’t agree more about the myopic view of some of these medical professionals…. They could all do with a bit more joined up thinking!

Letrozole is the strongest of the AI’s, but Anastrozole (what I was on) works the same way but is a little gentler. Have you thought about maybe trying that one? Then there’s exemestane which works in a slightly different way but has some different SE, but might work better with your arthritis meds?? Could be worth a bit of online research before you plump for tamoxifen, which comes with other risk factors for clots and endometrial issues. It’s a bit of a minefield isn’t it

Ultimately, your inc can give advice but they can’t force you to do anything. It’s ultimately up to you to decide what you can and can’t tolerate. They aren’t living in your skin are they?

If nothing else, this BC merry go round, has taught me that it’s a bit a ‘one size fits all’… it’s very much a case of trying different meds, different brands, & even the time of day you take it can make a difference to some of us. I even heard of ladies switching their pill taking from morning to night & vice versa, and that can make a huge difference for some.

I hope you manage to find a way through very soon. We shouldn’t have to choose between quality of life and recurrence, but for some of us, that’s the reality. In my case, it’s a low risk, but it’s a risk all the same. But we all need to be able to function don’t we!!

Wishing you all the best

[caron]

What an incredible message, thank you for you nuanced compassionate take on what can be such a triggering issue . I wish you and your husband the best quality happy healthy life together, however many years that may be.

I just had my 3 month review with oncologist after pausing Tamoxifen and we jointly agreed to stop permanently.

The difference in my night sweats, insomnia, mood and energy has been incredible. I feel like I’ve got a bit of myself back.

1% protection from recurrence ( not death as a previous poster claimed) was not enough of a benefit for the destruction of my quality of life.

But like you I know I would feel differently if I was in my 30’s with very young kids, or a more aggressive cancer history.

I have also done a lot of research on testosterone, and have started taking it ( not on NHS) a week ago, and for me I can feel my energy levels bouncing back already.

I have balanced my personal attitude to risk, taken oncologist advise , researched thoroughly and decided to stay vigilant checking myself, eat healthily, reduce alcohol, keep fit, and embrace this lovely life I’ve been so lucky to have another bite at the cherry at.

[jeh1]

Thank you for your lovely wise words, it’s been very helpful and reassuring to read such calm, sensible advice!

[josie2]

But then some people’s benefit is actually tiny.

My benefit on Predict was 0.1% so I’d call that pretty tiny!

What annoys me more is that this wasn’t even discussed. I was simply given it to take. Thank god I did my own research and didn’t take it. The trouble is some of the side effects can be irreversible so neither option is to be taken lightly

[josie2]

There other thing is the medical professionals often use relative numbers to persuade you to take AIs.

So they’ll say you have a 25% benefit or something. But if your risk of recurrence is 5% then 25% reduction of that is only 1% but of course 25% “benefit” sounds much more convincing than than 1!

Also worth remembering is that even as BC survivors we’re more likely to die of heart disease or dementia than we are of BC!

I’ll keep taking my HRT to protect me against these thanks very much!

[sam1204]

I’ve been reading this thread with great interest as I am about to finish chemo end of this week (still got 3 more months of herceptin injections though), and seeing my onco on 12 May at which time she wants to cover Letrazole with me. In my Predict score it gives me an extra 2% (takes me from 90% to 92% if I take it for 10 years). I’m 57 and my cancer was all successfully removed in surgery; chemo has been adjuvant (as HER2 positive) and not too bad overall though of course I’ll be glad to see the back of it! Am really in two minds about the AI; I need good quality of life and want to get my physical fitness back which chemo has take so much away of. I can’t bear the thought of aching joints and legs and weight gain etc etc. I’m a very physically active and fit person and it’s very important to me.. I’ll go in with an open but informed mind and keep coming back to this thread which is very useful, so thanks all

[misswoof-88]

Hi Sam,

You sound like me! Although I didn’t do the chemo as my her2 status finally came back as negative/low after about the 3rd go at the lab!

I was initially sent a prescription for anastrozole by my surgeon BEFORE I had even had surgery and I was not at all impressed with that. I hadn’t yet had the chance to ask my own questions, so I kicked up a bit of a fuss with the BCN and told them I wasn’t starting anything until I had spoken to an oncologist about my pathology results and managed to get answers to my questions… I was pretty livid, truth be told, because I already had a conversation with my surgeon (lovely as he is) that we would re-visit the question of AI’s AFTER I had recovered from treatment. So, to then get the script in the post with a copy of the covering letter to GP stating otherwise, and that I had agreed to start straight away, well… I just wasn’t having it!! We have little enough control as it is without such huge decisions being made over our heads…

Anyway, I said my piece and shoved it in a drawer until I was bloody well good & ready!

I did try it though, albeit with reservations I gave to say, but I decided to try with an open mind, as you said above. Then at least I would know…

I spoke to the onc and asked her probably more questions than she was happy with, but what came across loud and clear to me, is that the data on the long term effects of 5/10yrs on these meds is sketchy, to say the least. Much more research is needed.

I get that the nhs is trying to keep us cancer free for 5 years (at least) in order to not need further treatments - fingers crossed. But I question their motives for blanket prescribing (especially letrozole, which is the most agressive, therefore best at endocrin suppression). Is it really entirely motivated by our wellbeing, or is it the nhs saving on potential future costly cancer treatments/surgery. I do wonder??

Being ‘off licence’ these pills are pretty cheap (pennies per day) and I do think that that is often the primary motivation- not necessarily patients long term health. I get why, of course (we all understand the pressures our nhs is under). But it doesn’t make it right if that’s the primary motivation. And, IF, some of us,that do take it for 5/10yrs, end up with chronic heart/bone issues or dementia down the road, surly that’s a false economy, long term?? I guess it serves to kick the can down the road in difficult times for a country with a cost of living/underfunded nhs crisis, and if the data for us was there, collated, and explicit, I could understand them doing that. At least we would be able to weigh up the pros/cons properly. But it’s clear that they just don’t really know for sure.

If these meds are all that’s standing between you and stage 4, you are obviously going to have a different reaction and other considerations. But most of us aren’t in that position.

Either way, these are not easy choices, for any of us. And, I don’t know, maybe I’m just a cynical old trout! Lol…but I need to go with my own gut on this. I’ve looked at it from all angles and done sooo much research that I feel content with my own position on this. It feels right, to me, to step away- feel well - get on with living a full and happy life and keep strong, for as long as I possibly can.

Either way, Sam, it definitely does pay to do your own due diligence. It’s your life

It has taken me months & months to feel like myself, I have little intention of dialing that back right now. It’s good to feel strong again. Like you, I took hrt to protect myself long term. So, taking a medication that rows back on all that, for such a small risk/advantage, just doesn’t make sense to me. But that’s my individual situation. I would rather NOT risk my long term health on a small risk when I really struggle on them anyway.

I would rather be happy, fit, and active and enjoy life for long as possible- feeling well. And I’m philosophical about the BC. If it does come back, it’ll be shit, of course, but at least I’ll know that I can handle what’s coming next time forewarned ‘n all that. There’s no point living in fear & having already faced the “I’m sorry, it is cancer” already, we all ripped that plaster off back then. It’s less scary now, weirdly

I wish you a healthy happy life too.

All the very best to you and I hope you have a good follow up appointment

[sam1204]

Wow thank you so much @misswoof-88 for that honest and so useful reply. I really will look into it properly. I hate being out of control and not knowing what’s being put in my body. Before BC I hardly ever took a bloody paracetamol never mind any other medication! Now it’s paclitaxel and herceptin and steroids and antihistamines and omneprazole…..

Thank goodness for google and forums like these. I will get on and do my research. Thanks again.

[misswoof-88]

Yes, you and me both. Ibuprofen was about as much as I took and that was pretty rare. So, yes, I get where you are coming from…

I just worry that all of us are just being put on these meds just because it’s become “protocol “ to do so. And with so little long term data, that’s got to be a concern- surely??

I’m not saying they aren’t great at what they do, they are. And there is no doubt that they save lives that would otherwise be lost to BC, but do we ALL actually NEED 5/10 yrs on them?

My onc initially said that, if she was making the decision on my ongoing therapy, she would put me on Letrozole and not for five years, but 10!! I said “why?”. Her response spoke volumes: she said “I always do”.

It was only after I had had such a bad reaction, and she took me off of anastrozole - permanently , that she became much less bullish and more balanced with her advice. That’s why I wonder if it’s just become normalised to prescribe to everyone with ER + , regardless, with the hopes that we tolerate it for as long as possible… it’s an easy, cheap solution for them to keep us from needing further costly bc treatments - all the while that we carry on taking it, it’s highly unlikely that the vast majority of us will have a recurrence while on it. But if we are unlikely to anyway, it seems unnecessary to put our bodies through that - for years. Playing the odds, it’s likely a good deal for the nhs cancer budgets though.

Who knows?? Made me curious to get as much info as possible, that’s for sure. This place is a godsend for us all

[dutypigeon]

As a followup i have been back to my breast care clinic and had a really great and empowering discussion. I am now 3 weeks into a 6 week break and feeling sooo much better. My clinic letter was very informative and recognises the interplay between predict scores and quality of life. My letter has been really useful in talking to my hubby and children, and I have made the decision to not restart anastrozole fully supported by my family. I already feel 10 years younger than my 71 yrs lol

[Tili]

@dutypigeon, Thinking of you, and wishing you well, I think we all make our own decisions and are usually the right ones, I also had to stop take Letrazole as I was so poorly.

Wishing you lots of happiness going forward.

With the biggest hugs Tili
,

[montreal]

I posted on here back in February when I was finding the side-effects of Anastrozole really debilitating. I saw my BS in April by which time I’d been on it 17 months. He was happy for me to take a 4-6 month break and try again. He said that he’d had patients who’ve taken a year’s break! He said it would be best if I could complete the five years overall, but if I needed breaks along the way, that wasn’t a problem. I know everyone’s circumstances are different but this felt like a huge weight off my shoulders.

[sam1204]

I saw my onco yesterday and she’s given me 5 weeks to think about Letrozole whilst my body recovers from chemo. She was reasonably receptive to my concerns and said whether I take it or not she can give me no guarantees of anything. She also said it’s a personal choice. She went through my Predict scores again and it’s an extra 3% in 10 years time. That’s on top of my score after surgery, chemo and targeted therapy which is 89%. She also said it would be for 5 years not 10 - which isn’t what she said originally! She disputed that it blocks ALL oestrogen and said in any case as I currently have no health conditions like diabetes, high cholesterol or high BP that I’d be at lower risk of developing them (don’t know where that comes from!). She went on to say that there would be options to have breaks annd change drugs, and if for example I get high cholesterol they’ll give me statins, if I get bad joint pain I can take painkillers. So treat side effects of one drug with yet more drugs. Hmm. There was no discussion of me as an individual, my lifestyle and the fact that I’m a healthy weight, eat a vegetarian high fibre diet and exercise A LOT will help metabolise any oestrogen. It’s definitely a one size fits all approach.

Anyway I’ve got time now to do even more reading and hear from others their experience. I’m 57 and post menopausal; as far as I’m concerned the next 10 years will be the best I’ve got left and I really want to enjoy them, climbing mountains and running and doing the garden and allotment and travelling….not in pain or a constant state of menopause. Big decision .

[jolou]

Hi @sam1204 - only my experience of course. I had / have (never quite sure what to put?!) stage 3 , ER+ / HER- , one node involved - tumour was bigger than originally expected - 11cm.

I had chemo first ( 8 sessions, 4 of which were dose dense EC ) , therapeutic mammoplasty, 9 nodes removed, re-excision, 15 weeks of radiotherapy. I started letrozole 3 months ago - a week after last surgery. Due to tumour size - classed as high as risk of recurrence - so it wasn’t a choice really. I was dreading the letrozole - but its been ok, yes my thumb joints ache in the evenings, knees are a bit sore too sometimes - but I decided after all this rubbish that I need to concentrate on what I can do. (hated being so weak from chemo, wanted to use the energy I now have back!) As I am sure you know exercise is really important - a massive 4% difference in recurrence rate. So have started running three times a week, walking, gentle strength training - and feel so well. I asked the oncologist yesterday - is it ok to be so active - will it make joints worse? He was adamant that exercise, consistent exercise, is so important - and I am sure it has minimised some side effects. Of course I didnt have a choice due to my circumstances but wanted to reassure you - you already sound a very active person - that you will be back to it and not hindered hopefully at all by letrozole if that is what you decide.

I am starting abemaciclib in 2 weeks… so will have to manage those side effects too of course - but am determined to keep moving.

Sending warm wishes

jo

x

[sam1204]

Hi @jolou Jo - thanks so much for that. Definitely reassuring . Sorry to hear you didn’t have a choice but glad you’re managing the SEs and sounds like you’ve become really active which is great! My tumour was less than 2cm but I had a large area (9cm i think) of DCIS hence mastectomy, chemo and herceptin (I’m HER2+). Letrozole for 5 years adds 3% to 89%.

Out of interest where does the 4% improvement from exercise come from? These are the kinds of things I want to gather and understand better.

As I’m so active but getting older I already take glucosamine daily so would hope that will help with joint pain if I get it . I’m not taking painkillers forever that’s for sure!!

Thanks again

[jolou]

I too am 57!

It was from my radiotherapy consultant - who said about the 4% when I had my final review - he said if pharmaceutical companies could bottle it they would!

Just googled it and came up with this , but lots online about it.

X

Exercise and Survival for Women with Breast Cancer

[sam1204]

Thank you @jolou i will read it with interest!

[misswoof-88]

Hi @jolou , it’s good to hear a positive response to letrozole, thanks for sharing.

Yes, the thumb joints and knees do seem to be common one, especially first thing in the morning. I too got it. With me It was big toes as well

Thought you’d like to hear that my trainer (who is living with stage 4 bc and is an awesome athlete that runs marathons still) is taking abemaciclib and does fine on it. It’s not like chemo, but she said it gave her a bit of tummy trouble early on. Settled down pretty quickly though and she’s been fine on it.

I think they monitor your liver pretty closely on it?? Lots of endocrine meds seem to need it (I’m on thyroid suppression meds and have to have regular bloods on that too. But I’m ok with it)

You are absolutely right about being active. It’s so important for all of us boob babes! I think it’s just good to get a bit of control back too, in what ever way we can.

I’ve finally got the energy to get back in my garden - properly! I’ve been extending borders and cutting hedges and it feels so good to have the energy.

I do strength training too and it’s become very important to me. When I can see the weight being added each week, I feel like I’ve achieved another goal in my mission to keep this critter out of me!

Any one of us could get a recurrence… but I figure : the stronger I am, the better I’ll cope if it does.

All power to you too Xx

[jolou]

@misswoof-88 so encouraging to hear about your trainer! thank you! in advance am very good at looking at side effects list and spiralling! I am very knew to weights - but its empowering isnt it ! sounds like you are doing amazing x

[bluetit11]

My advice would be try it and see. Many don’t have huge problems.

I took it from diagnosis for 3 months. In my case I highlighted half the side effects on the leaflet that came in the box. Biggest ones for me were joint pain which meant I was losing the use of my hands and really low mood bordering on full depression.

BCT have therefore agreed I don’t need to take it for another 5 years. I’ve been off it 2 days and am starting to feel better,