Aromasine continuation after 5 years

I'm wondering if it's worth taking because according to the nhs predict tool it doesn't seem to make much difference.  I've only had 17 days and am fed up with it already.  I've had surgery chemo and am about to have radiotherapy and also advised to have a bisphosphonate.

I'm going to the breast care nurse about it. Maybe you speak to someone in your team. I think we need to know how much difference its likely to make and make a choice. If its less than 1percent then it's not worth it. We have a right to have that information. 

I know what you mean about feeling that we should be grateful and we are but there has to be some quality of life 

Xx

Hi NanaBetty, you’ve raised a question that’s very pertinent for all of us on hormone zappers. Great that you’re nearing the 5 year milestone (as I regard it anyway!), but I can totally empathise with your hopes of stopping these horrible tablets. On the other hand, sadly hormone positive breast cancer has a nasty little habit of sometimes coming back for a second bite beyond 5 years so I’m guessing that’s why they want you to carry on. I’m only at the 3 and a half year marker myself but am actually gathering evidence to argue to stay on mine beyond 5 years, assuming I get there of course! I hate the side effects (in my case mainly fatigue and joint pain but others as well) but in spite of them I’ll keep popping the pills for as long as they’ll prescribe them in the hope of keeping the beast at bay. It’s an individual choice though and we should all be able to have an honest conversation with our oncologist re the risks (of side effects as well as of recurrence) and benefits. Such a minefield. 

Re production of oestrogen, my understanding is that post menopausal people still produce some of it in fat and muscle. I think the aromatase inhibitors (like Anastrozole which I’m on) get in the way of that process. 

And re getting your oestrogen levels checked, I’ve actually just requested this from my GP, though have had no response so far! I would be so reassured to know that my levels are really low and I feel that I could tolerate the side effects more if I knew for sure that the pills were doing the job. I’ve been advised by a member here to ask for a ‘high sensitive oestradiol by mass spectrometry’ reading as otherwise you just get your results in a range rather than an actual level. 

Hope you can come to a decision that you are happy with, it’s your body and your life after all. Love and hugs, HFxx 

HI HappyFeet and thank you for replying with such useful information. Were your lymph nodes affected? if so i think they keep you on the tablets automatically. 

My cancer was very aggressive and everything happened so quickly that i made the decision not to research but i let my husband and close friend do all the "googling" and feed me the positive information. I'm not sure if the HRT i was on caused the oestrogen problem and when i asked at the time every one said it was irrelevant. This is the first time i have heard of "mass spectrometry" so thank you this is something i can maybe look into. Do you know if there are levels of ER +? or percentages ? e.g. a scale to say how ER positive i was at the time of diagnosis. 

I think it's time for me to be pro active with my treatment and start a bit of research. Like you say if there is proof the pills are doing there job i will continue popping.

Thank you

I think there is new research all the time so if they are now advising staying on it for longer, there will be a good reason for that.

I wanted to say that I went into a sudden medical menopause with treatment and the hot flushes came with anxiety, feelings of claustrophobia and panic. I have been trying acupuncture and although the night sweats don't seem to have reduced significantly, I no longer get the rising panic that comes with them. Acupuncture seems to be calming my adrenal system, which in turn helps to make me feel OK about the flushes.

I even wake sometimes in the middle of the night now and don't get an accompanying night sweat. I just go back to sleep.

Waking frequently is very common for everyone, I think it is the feeling of anxiety that keeps us awake.

Acupuncture really helped me with that, so maybe worth a go, I have top ups every 4 weeks now, I may be able to reduce them in the future, but at the moment by about week 3, Im starting to feel a little anxious again and have flashed of anger, which have all but gone the rest of the time.

Hi I am on letrozole for 10 years, in year 2 now, achy and stiff but Happy to manage it . Gp unlikely to check levels in my experience, it's not standard practice.

I had full node clearance 19 out of 24 affected. 

Xxx

Hi NanaBetty, my lymph nodes came out clear (the 2 they sampled) so I escaped chemo. By the same token I’ll probably only get 5 years of hormone treatment, I’ll have to ask to continue. The evidence I’ve read (I think originally posted by Londonmumof2?) suggested that there are definite benefits for all oestrogen positive folk having an extra 2 years. 
Re oestrogen levels, as Pusheen has said, GPs don’t offer this routinely but I’ve asked for it - whether I get it or not remains to be seen! My friend had hers measured several years ago to check if she was post menopausal - her level was apparently zero. I’d love to know that mine is very low as I’d know the Anastrozole is working. I don’t have a base line though as it hasn’t been measured before. If I find out more I’ll let you know! Love and hugs, HFxx 

Hi NanaBetty

If you are struggling with the AI’s have you thought of changing to Tamoxifen ? I am now in year 6 of it , and am fine , for some reason even though I am now 57 I am not menopausal enough to get the AI’s , they don’t work unless you are post-menopausal, however you can have Tamoxifen if you are pre or post. My consultant said she has many women who take AI’s who have life affecting side effects , whereas Tamoxifen is generally better tolerated. My mum had breast cancer about 16 years ago and although 69 , there was only Tamoxifen available then and she too was fine. Worth an ask, rather than suffer for another 5 years , particularly if you are thinking of stopping taking them.

jo x