Hi @jayesse and all the posters on here. Just catching up on this thread…
I am forever grateful to this thread and the stories shared as I have found it so supportive and it has eased my sense of guilt and isolation over not taking AIs. There are many factors that can influence decisions. Showing kindness and not being judgemental are so important - how can we ever know everything behind an approach or decision from a post on a forum?
Have a great holiday in Italy @jayesse
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Thats a good point you bring up, such is the broad use of tamoxifen that you don’t even have to of had cancer to be given it. DCIS is enough, where the benefit must be tiny. I’m sorry you have had TNBC since, however, that is a new primary, thankfully not a metastases from your DCIS and quite possibly would of happened regardless as after 10 years. I’m sorry you find yourself on this merry-go-round again.
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I went to a wonderful recital today. Harp and flute in the tithe barn in Dunster. Absolutely amazing and followed by Somerset cream tea!
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That sounds delightful! I visited Dunster last year to stay with a new cancer pal I met at Penny Brohn. We visited the castle and had coffee in charming old pub in the village. I remember seeing the tithe barn so can picture the scene! X
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Hi; I wanted to join this thread ( not posted before) . I had a mastectomy 18ths ago grade 1 stage 1 multifocal lobular/ductal no nodes etc . Age 60. Recovery ok a little clunky big seroma which resolved and a year on tamoxifen which i tolerated well but I grew a polyp (abandoned hysteroscopy due to stenosed cervix so yearly mris just now) they say they don’t think anything untoward.
Switched to letrozole however my surgeon argued with the oncologist ( never seen an oncologist but my surgeon is amazing) at mdt saying he believes letrozole was not for me and I would not tolerate it. Oncologist simply said letrozole 5 years…
Anyway fast forward my surgeon is right; I had to have ECG yesterday for chest pain and my mood has lowered in that I cry way more than I ever did! (ECG fine and looked like oesophageal spasm that can mimic heart pain) Amongst the usual dry eyes nose and mouth etc . He is going to bring it up again at MDT meeting as he feels the cons outweigh the pros. He is all about patient-centred care. Predict shows 0.2/0.5 and 0.8 benefit 5/10/15 years albeit that’s tamoxifen. Never had an oncotype as grade 1
If he says I need to battle on then I will try but unlikely I will manage any length of time and I think likelihood is he may say stop… albeit I feel a little bit of a failure but I will go with the flow.
So all sorts of reasons for stopping and sometimes the surgeon and oncologist don’t agree ( I would go with my surgeon personally as he is amazing)
Anyway hope you are all well.
Lots of love x
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Hello
I think I had a similar situation in that my Surgeon prescribed Tamoxifen and felt there wasn’t a need to put me on an AI . Unfortunately he hadn’t taken into account my previous retinal vein occlusion which made Tamoxifen unsuitable for me as it’s a thrombotic event plus there’s a proven risk of eye problems with it and my vision is already damaged. So I was put on Anastrozole by the Oncologist - the first few weeks were very hard , hot flushes twice every hour at least and accompanied by a loud thumping heart which was frightening and I went to my surgery for an ECG though nothing abnormal was found on that. I also had dreadful brain fog and kept bursting into tears - I can’t entirely blame the Anastrozole for that as I had some family problems and was starting as well to try to process the whole breast cancer journey as my active treatment had finished at that point.
I don’t know how long you have been on the Letrozole but for me the thumping heart thing settled then the flushes reduced to a level that was more manageable and the weepiness and brain fog eased as well though the flushes did come back with a vengeance at the end of summer but I’m sure they would have eased again when the weather cooled .
Unfortunately for me the menopausal side effects were then replaced by joint pain and thinning hair . For me on Predict 2 taking AI only improved my score by 0.8% to 1.3% and with my underlying health conditions I have stopped with the blessing of my Surgeon and the BCN team understand . My Oncologist had discharged me several months before - I know she would have preferred me to stay on them but seemed pretty philosophical about it. I had a cancer that rarely spreads outside of the breast so for me it was a no brainer .
I just wanted to reassure you and tell you that firstly your Oncologist is partially right in that side effects can settle down ( some of them at least) and if you feel you want to continue or have another go - maybe with another drug it isn’t too late . I know a few people who didn’t get on with Letrozole but have tolerated Exemestane .
However - you aren’t a failure in any way . You completed all your active treatment and were quite happy on Tamoxifen for a whole year - it’s not your fault that you’re no longer able to take it . It’s great that you have your Surgeon and his team on your side but it is your decision at the end of the day and you can only make the one that you think is the best for you . Don’t let your Oncologist make you feel small - he is not the one dealing with the side effects or the scare you had due to the problem with Tamoxifen .
It sounds like like you have been having a really rough time so sending lots of love . Xx
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Thanks Joanne - that was so lovely of you to reply thank you!
And what a lovely thing to say.
my improvement on letrozole Is 0.3, 0.8 and 1% at 5 10 and 15 years
I think if my surgeon said battle on for a little bit longer I would try but if he comes back to say the MDT agree with coming off then I will - with slight trepidation, but I know as you rightly said at the end of the day its my decision.
I really tried with tamoxifen and was so fed up as I got on well with it and no issues - but the polyp was the problem and I had to stop. Letrozole has been so hard albeit I am still under 6 months but struggling.
Thanks Joanne
xx
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Please never think of yourself as “a failure” if you have to stop (as about 30% of people do). You most definitely are not and you have already been through so much and come so far.
Wishing you all the very best and sending you a big hug. Xx
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Thank you jayesse 
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At some point - usually when suffered months or even years of horrible side-effects - you start to question if its worth it, then you look into the benefits and realise how little it is. Then you can stack that up against the experience you’ve lived of 100%, knowing how rough you feel on a daily basis. No wonder then that it becomes a no-brainer to stop at some point. What is the point of struggling for 5 or 10 years, sometimes having long-lasting irreversible effects for something that may or may not happen, and on balance of probability won’t.
Figures and statistics don’t show how morbid life has become meantime. We have known so many ‘off days’ due to treatment that days of being more ‘on it’ and feeling good are more precious and all the sweeter, and we know those days are numbered and less the older you get.
Its all about balance, quality of life is individual, giving AI’s and tamoxifen is done ‘scattergun’ without taking living experience into account, it’s a treatment dished out purely based on stark figures.
There, I’ve said my piece. Somewhere, I’d like to protest about the secrecy around menopause symptoms- thats a whole other issue I’m exasperated over, now I’m expeiencing it. Somehow, I find I feel cheated that growing up to adult and beyond, physical hits happen in life that you have no idea about, until it happens, just because you are a flipping woman. I’m amazed women have been in situations of being encouraged to ‘get on with it’, " acccept it as part of life" etc.
The tide is beginning to change, it needs to move faster, I only have a son, but if I had a daughter, I’d be letting her fully know what can happen as a woman through giving birth, menopause, breast cancer, the whole lot! I’ve learnt through experience, but would feel less short-changed if there was advanced warning and education as a girl so you knew what was ahead. Society should do better than letting women find out in the moment.
Lol, peace out!
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I forgot that Tamox put me in menopause, I think I was close to it, Id always had iregular periods, but that darn pill also gave me daily & nightly sweats… Hi, are you wide awake like me? steroids today xx
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I was probably perimenopause before tamoxifen, full blown symptoms taking it, then back to perimenopause. I don’t get the horrible night sweats anymore but the more I do at the gym, or in general work life, the more my joints scream out. Muscles, fine, I’m not unfit and not ridiculously pushing exercise, joint and nerve pains down my legs, keep me awake at night - despite having done a very busy 12 hours at work in ICU today, flew by, but loved it - and, missed 5 vet calls about my dog who had 2 lumps biopsied last week.0 I love him, he got me through last year, I will do my best to get him through his lumps this year, but the worry is making me stay awake. Can’t do a thing about it till morning. I’m thinking they would not ring 5 times without leaving a message if all ok, especially when I told the vet likely at work so can’t answer, so please leave a message. So Google- fibrosarcomas my best guess and fits. The merry-go-round for my dog now, such is life.
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Oh I hope your bow wow is ok and that you get some sleep, give him/her a cuddle from me, we are dog sitting next week and I cant wait for the snuggles and kisses xx
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Thankyou, he’s on the sofa with me right now, had a duck breast treat I picked up on way back from work. He was my strongest support for me last year, so I will do all I can for him now. Seems fine in himself so far, business as usual for him. My boy, my furbaby, like a 2nd son. Hope he will be fit enough to come to a couple of music festivals I’ve booked with him. He’s a great camper, good in crowds, a fluffy goldendoodle that people love at festivals ( and he loves the attention).
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I couldn’t agree with you more.
Big hug to you xx
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I’m so sorry to read about your dog. I hope he is doing ok. Bless you both xxx
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Great news about my pooch, he’s just got fatty lumps (lipomas). Buzzing on that today 
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Yey!!!
I’ve got fatty lumps - but they’re called my bottom. Xx
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Lol, thanks. Top of my thighs for me, but I’m working on it, or trying to as much as my joints will let me 
xx
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Fantastic news, extra treats.
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