I think there’s a way they can stop ovaries producing oestrogen if you are premenopausal so you can take A I drugs such as Letrozole.
I think it’s a difficult decision and oncologists are expected to follow consistent practice laid down by the National Institute of Clinical Excellence NICE for each type of cancer.
This at least means the latest evidence based treatment for all.
I don’t know which I prefer dying of, cancer or heart disease or Alzheimer’s or old age!
So I prevaricate a lot.
Seagulls
I am now on antidepressants anti high blood pressure meds and anti cholesterol meds so I fear I am officially an old bag if not an old bird.
Hello
We have been having this very conversation on a different thread! “Should I stop the anti hormones”. I think there may be more.
I agree with you. I was led to believe from diagnosis that there were non-negotiable stages of standard treatment for my early BC - surgery - radiotherapy - hormone therapy. Having experienced a menopause already, it was the latter that scared the bejesus out of me most! I was told by the nurses that many if not most ladies tolerate AIs very well. What, I thought, does ‘tolerate’ really mean? After all, I had already ‘tolerated’ a menopause and didn’t relish living with that again for several years in my old age plus all the other risks for bp, cholesterol etc! All things we’re continually being warned to be careful to avoid! They must be real risks or why would we be monitored with expensive tests for bone density for example! I’m 69 and still farming albeit in a semi retired way so I’m active and at present pretty fit and mobile. I can’t afford sudden stiff joints and debilitating hot flushes!!
I’d seen the effects of hormone therapy on an older friend who gave it up eventually, with a hostile reaction from her oncologist! It wasn’t until I met MY oncologist that I had any idea that I COULD take control of any of my treatment. He started by asking me how I felt about treatments on offer and I said I wanted to feel like I was part of any decision making going forward. I said I dreaded hormone therapy and why. He said “I think you’ve answered my next question!” He then read out my recurrence risk stats from the Nottingham Prognostic Index that they use, which came up with a 2% added advantage for hormone therapy after radiotherapy. (That also means that 98% of women will take the drug to no advantage). HT does not eliminate the risk altogether - there’s a 2% risk even if I take it. The choice was mine!
We have to assess risks everyday - probably without even realising it. Perhaps being self-employed in a relatively risky job gives me a different attitude to risk than some? Working with big, unpredictable animals requires an amount of risk assessment every day! Anyway my husband and decided it was a no-brainer and I never even started the pesky drugs.
My husband has difficult side-effects from his heart meds, but he would have immediate worse effects from the heart condition he lives with if he were to not take them. There’s the difference. His risk is immediate, mine is hypothetical - a maybe. There’s a small risk of recurrence with or without the drug and I’ll have to deal with it if it happens. At the moment I’m absolutely appreciating every minute of fitness I have to keep living a life I enjoy for as long as possible - but we have got rid of the cattle as they do require more youthful mobility!!
How are you now?
There also seems to be some confusion around what percentage recurrence and/or survival means. % survival meaning percentage surviving without recurrence v just getting recurrence of disease - or actually dying? Recurrence being of new treatable tumour….or of bc as metastases? I’m confused!
Glad to hear you’re doing OK on the HT - it sounds like the right decision for you. However, I would just say it isn’t always as you say - so simple! Sometimes the side-effects are serious for women who have other co-morbidities or who just react in other ways. I have a friend who was absolutely poleaxed by the HT (it may have been down to her body’s reaction to chemotherapy?) and eventually gave up. We all have different risks of recurrence too - some greater than others. Recurrence is not always WAY more likely off than on the drugs. For me, it’s a small chance…2% benefit with HT but then I still have a 2% chance of recurrence even if I take the drugs. With an active life/job where I have to be active/on the ball at times not of my choosing, that also comes into my risk assessment! We all have to weigh up the costs and benefits of insurance within our own circumstances. Perhaps sometimes the costs outweigh the not infallible benefits.
Good luck with your forward path after this dratted BC! x
Hi @Geeps
There seems to be very little information about recurrence percentages - as in what percentage of the 82% (in my case) who are still living at the end of 10years had a recurrence or more than one recurrence and still made it beyond the 10year marker.
My partner hadn’t initially understood that the figures we were being presented with, were mortality rates, as opposed to recurrence rates - we only realised this about 4 months down the line of treatment discussions! This came a bit of a shock to him, but he still backed my decisions.
So I had the second lumpectomy and SLNB on Tuesday and am sore and drained off and on from the anaesthetic. Being on Auntie duty for all of yesterday afternoon and evening was probably not the best idea, but my brother is never good with timing - however I’d accepted as I don’t get to see my nephews very often - exhausted today though!
I won’t get feedback about the operation or the biopsy results until the 20th March - annoying that it’s an exceptionally long wait this time - but that’s just the way it is. So I won’t know until then about what the next steps in my treatment plan are. I still don’t want to do chemo or take the hormone blocking drugs, but that’s a discussion to have again at a later stage when I know more. I’m worried about future effects of the radiotherapy, but I intend to follow the doctor’s recommendation on this. Radiotherapy wasn’t going to happen for me until January, so I guess if I hadn’t found the lump myself by then, they would have found it prior the sessions and we would still be where we are now. If the lump had appeared post radiotherapy, it would have had to have been a mastectomy this time.
It does concern me how quickly the cancer came back - so I will naturally be taking this into consideration when I make further decisions.
Of course nothing can tell us whether I would still be in this position, if not now, then a bit further down the line, had I done chemo sessions, as there are no guarantees- only increased chances for a (high?) percentage of people but not everyone…
Where are you with your treatment journey?
Best wishes
I’ve been reading this thread with some interest. It is a very difficult decision for anyone to make as we don’t know what risks we run if we do or don’t take medication or have recommended treatments.
I was diagnosed with primary breast cancer in 2016 and was advised that following a WLE and ANC (3/25 were cancerous) that I should have chemo (FEC-T) and radiotherapy as the ‘belts and braces’ because I was cured!
To be honest it wasn’t floating my boat and I felt as if I was ‘talked into it’ - partly by family and friends but also by my MDT. Surgery left me with lymphoedema in my arm and tightness under the arm due to the ANC: everything else was fine.
Post chemo I was left with peripheral neuropathy in my fingers and toes, tinitus and my eyes were affected and have never recovered. Post radiotherapy I was left with lymphoedema in my breast and surrounding area. I then spent 5.5 years on letrozole ‘living the dream’ - I only put up with the side effects because I was led to believe that this prevented any chance of the cancer coming back.
Prior to agreeing to this treatment I had a discussion with my nurse and she highlighted a new primary cancer or a local recurrence could happen but not to worry as I would be able to receive further treatment for these.
Fast forward to February 2023 and I was diagnosed with secondary breast cancer in my bones. I was shocked as I had been going down the Drs for 18 months complaining of an issue with my hip and I was told it was muscularskeletal and I was sent for physio. By the time I was taken seriously it had spread to other bones.
If I had known then the risk of developing secondary breast cancer I definitely would not have had the treatment as I feel that the quality of my life was affected between the treatment for primary breast cancer and the secondary breast cancer.
Unfortunately hindsight is a marvellous thing. The only upside is that I am still treatable but not curable and I know that new treatments become available all the time. Having said that I am now at the stage where quality is far more important to me than quality and my MDT have been made aware of this in no uncertain terms.
As I said initially it is a very difficult decision. Some people will be happy with their choice and cancer will be a thing of the past but for others it comes back to haunt us. I do not envy anyone who has to make these choices: it is a very personal decision.
Thanks for sharing this @jan.amityville.
I am sorry to hear what a difficult journey it has been for you and hope you find future treatment more manageable.
My follow up appointment has been pushed back another week to the end of March - so 5.5 weeks in total. The waiting game is so frustrating as just not knowing where I am at with the cancer and where to go from here…
Sending a big hug x
Dear Geeps. After taking a lot of blood pressure readings using a rather handy machine in the GP surgery waiting room the GP suddenly got in touch to do a 24 hour blood pressure monitor which was done by me wearing a monitor all night and it waking me up twice an hour by inflating every so often. Yes indeed I now had dangerously high blood pressure after 18 months of letrozole etc. The monitor gave me a bad rash too, as I have allergies to all sorts of things presumably the agent used to clean the bp monitor set it off. So now I was prescribed amlodopine. Shortly after this they did a blood test which showed I now have high cholesterol now, which I think is a side effect of letrozole too or maybe it’s due to comfort eating. I do like a tesco finest cumberland chipolata or seven, and the odd bacon rasher. Mea culpa.
I did say once or twice that I wondered if I would rather die of bc or heart disease. Heart disease and Alzheimer’s are currently the most common causes of death of the female sex (with average life expectancy now 86 or so). At 68 and a bit I have possibly 18 years left. If I continue to take letrozole for the maximum of ten years I shall be taking it up to age 76 which seems a long long time. Especially if it accelerates heart disease in any way.
Who knows what joys lie ahead? It’s being so cheerful keeps me going!!
Bravo for your humour and spirit, Seagulls. You’re clearly made of the strong stuff - long may it keep you afloat ! I do hope you have someone to crumple into whenever you need to, though.
MistyK xxx
Crikey Seagulls! I’m sorry to hear of your bp and cholesterol woes. What does the doctor say about taking Letrozole in view of your dangerously high blood pressure? Trouble is, I think they’re afraid to cross consultants. My friend had another consultant (for another condition but which seemed to be being affected by other meds) who said “I’d knock those hormone inhibitors on the head if I were you!” Her oncologist was furious and wanted to know his name - which my friend pretended to forget! She gave them up and doesn’t regret it because they were debilitating for her (in her 70s).
What is your recurrence risk? Once you start taking bp and cholesterol meds you can get a whole lot more side effects. My husband has worked out eventually how to minimize heart and cholesterol meds - while also having regular monitoring and checking with the GP as he goes on in case things change. He is very careful with his diet - no dairy, in fact almost vegan with occasional chicken or beef. This can be much nicer than it sounds! I thought I’d miss bacon - now I find it horribly strong and salty!!! However, he’s a better cook than me! And you don’t have to go full-vegan!
The danger is not just heart attack but also a debilitating stroke. OK so the oncologist wants to keep you off his recurrence list - but at all costs? Semi paralyzed but hey - cancer free!?!
If I had seriously high blood pressure and cholesterol I’d be flushing that Letrozole down the loo. Second thoughts, that would be harmful to the water courses so I’d put them in the wood burner!
However, your recurrence risk may mean you feel you have no choice? I do hope you can find some good medical advice that isn’t just chasing the symptoms of each drug you’re given - I sometimes feel we’ll all end up like the old lady who swallowed the fly!
I’m the same age as you - quality of life is important. I’d be seriously asking myself, as well as my doctor - which carries more risk to me now - high bp or bc recurrence? You might get more of a second chance (or even third) with bc? But a heart attack or stroke?
I am sending all my best wishes your way Geeps x
Hi, my mum has just been for her yearly mammogram and obviously I am extra anxiety ridden waiting for results and found my self here. My mum has decided about a year ago to stop tamoxifen and letrozol (after 1.5 years on them) due to bad side effects. My mums cancer had a great prognosis stage1 grade1 1cm her2/- ER/+. However her stopping the medications has caused me a lot of anxiety - the predict tool gave me peace of mind until realise that’s for deaths not reoccurrences. I can’t deal with the idea of it coming back, yet, my mum seems unfazed. Just hoping to get some advise / reassurance. It’s a hard time of year lol
I can understand your anxieties. However, only you mum knows how the side effects of the hormone therapy affected her life. You are understandably worried that, to your thinking, she’s given up a tool that you see as something to prolong her life. But only she knows what it’s been like for her - you can’t get into her skin and experience how those drugs make her feel and negatively impact her everyday life! She has probably often hidden the side-effects - putting on a good face so as not to draw attention to herself or worry her nearest and dearest. Most of us don’t want to go on about our ailments but rather just try and carry on as normal don’t we?!
Her prognosis is very good with stage 1 grade 1 and she’s at very low risk of recurrence. Even a recurrence is not an automatic death sentence - my oncologist was happy for me to decide not to take the hormone therapy when I’d weighed up risks on both sides.
You say you can’t deal with the thought of it coming back, and it IS worrying to be the onlooker when someone you love has a serious illness - sometimes you feel helpless - I’ve felt that. But your mum is the one who has faced the beast itself and has coped with it. She’s the one who has experienced the negative effects of the drugs on her quality of life and will have come to her decision in her own way after plenty of thought and advice. It’s your job to support her now, in her decision. Believe me, it’s so important to have that support! Don’t judge her, (or accidentally undermine her decision) - show your care/concern but try not to pass on your anxiety - it can be catching! Trust her and go with her and enjoy!
I’m speaking from my experience - I do hope this helps. X
Hi @jdp0812 I feel for you as I had similar long term anxiety about my own mother albeit her disease was dementia not cancer and frankly there was never any hope that she would get better. It can be debilitating to have such worry when there is literally nothing you can directly do to impact the situation.
Let’s look at what we know. Your Mum’s histology was Stage 1 Grade 1 - best result imaginable (other than not having BC at all!). She was Er/Pr+ HER2- and her tumour was a teeny weeny 1cm - once again, a massive tick in the HURRAH column. I know this because that is exactly what I had, except my tumour was 1.4cm and there was an embedded DCIS. My surgeon actually drew a grid of all potential outcomes and literally put a big tick against all of my results. That’s what your Mum had . When you put all the information into Predict the results were good, right? Yes, Predict is about survival BUT if you look at the results on the Icon view you will see the pink circles which represent deaths related to breast cancer. This is the statistic for metastatic BC which is what people die of. No-one dies directly from a primary BC and certainly not one that is stage 1 Grade 1. When I put my statistics in to Predict, remember almost identical to your Mum’s, I get the result of 1 % BC death after 5 years, 2% after 10 years and 3% after 15 years on surgery alone BUT on 5 or 10 years of endocrine treatment, only 1% fewer person dies from BC after 10 years and 1% after 15 years. If you look at the decimal point view, after 15 years only 1.2% of people will have had a metastatic recurrence. That may all sound like gobbledygook but the point is, for your Mum’s prognosis, the tablets she has given up will make virtually no difference to her outlook at all.
Women with this prognosis who do take them do so partly because they want to do everything that they can no matter how small the impact, partly because we’re brought up to do what we’re told by doctors but mainly because they have no meaningful side effects. If you DO have meaningful side effects they can be utterly debilitating which is why a significant percentage of women give them up. Statistics say anywhere between 20-50% give them up but it’s hard to know accurately as many women give them up without telling their medical team.
I think Geeps has it right, you have to support your Mum in her decision. What’s the point of having a prolonged life if it’s miserable? Your Mum is unlikely to have a recurrence and even if she did, it will be treatable. It does you immense credit that you are so worried about your Mum but she’s not just your Mum, she’s a person who wants to live her own best life which she can’t do when she’s being dragged down by ill health brought about by drugs she probably doesn’t need. I hope none of this comes over as patronising because I honestly do understand your worry. Good luck to you and especially your lovely Mum.
Thank you and Tigress, for your lovely and very reassuring replies! I never try to convince my mum to act another way but just when it gets to her mammogram time of year it’s all the what ifs! Which may sound silly because it’s not even MY mammogram, were just very close and I’m only young (early 20s) so let my mind run away sometimes. Yous are both completely right and I take everything’s yous say on board xx
Your Mum is lucky to have such a loving and selfless daughter. She’s obviously brought you up very well . They call it scanxiety and it is very common. I prefer to look at the annual mammograms as a confirmation that I’m doing ok. The kind of tumour which your Mum and I had (past tense!) aren’t aggressive and are very slow growing so fingers crossed she’ll sail through it. Still not easy for her or you, I know, but it will get easier as the years go by.
Letrozole saved my life. I didn’t even know I was ill until I had a pain in my side. By that time Ii was stage 4 with mets to my bones and liver. it was my liver that gave me the pain. my primary BC tumour was so small and hiding behind my breast bone that it was not picked up on my routine mammograms.
To cut a long story short I was given a week to live and Letrozole was tried as a last resort. That was 5 years ago, all I can say is thank God for Letrozole…
Hi debbie4, You have proved that nothing is ever simple! A wonder drug indeed for you. What a shock and turmoil you’ve been through - I do feel for you, and wish you the very best for the future. Thanks for sharing - it’s good to know how in some circumstances these drugs are indeed life-savers.
Good luck xx
. When you put all the information into Predict the results were good, right? Yes, Predict is about survival BUT if you look at the results on the Icon view you will see the pink circles which represent deaths related to breast cancer. This is the statistic for metastatic BC which is what people die of. No-one dies directly from a primary BC and certainly not one that is stage 1 Grade 1. When I put my statistics in to Predict, remember almost identical to your Mum’s, I get the result of 1 % BC death after 5 years, 2% after 10 years and 3% after 15 years on surgery alone BUT on 5 or 10 years of endocrine treatment, only 1% fewer person dies from BC after 10 years and 1% after 15 years. If you look at the decimal point view, after 15 years only 1.2% of people will have had a metastatic recurrence. That may all sound like gobbledygook but the point is, for your Mum’s prognosis, the tablets she has given up will make virtually no difference to her outlook at all.
. They call it scanxiety and it is very common. I prefer to look at the annual mammograms as a confirmation that I’m doing ok. The kind of tumour which your Mum and I had (past tense!) aren’t aggressive and are very slow growing so fingers crossed she’ll sail through it. Still not easy for her or you, I know, but it will get easier as the years go by.