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[Noheroicsplease]

One of my sisters was diagnosed back in May with estrogen receptive breast cancer.

I took the decision then to come off HRT, even if the risks (on paper) were minimal; calculations seem to go out of the window when you are sitting next to the related person with BC!

I've only ever really gone on HRT because I had an early menopause at 45 (for bones/heart) and after coming off, I went back on about a year ago for sleep - my sleep since meno has always been terrible.

Anyway, coming off HRT again was ok at first. But now, 3 months down the line, when the tanks are clearly empty, my sleep is HORRENDOUS again. I've done a sleep CBT course which helped but only for a while, I don't drink, I exercise, I eat well. But I'm lying there for at least 2/3 hours a night - or getting up etc, the point is I can't sleep. I'm also hotter than I used to be.

I don't know what to do. I feel like I should stay off HRT if I can, but this is punishing.

I don't even know what I'm asking, I'm just venting, I guess. All thoughts welcome.

[CLKD]

MayB have the gene blood test to be absolutely certain that you might be affected?

HRT does protect bones and heart as well as helping with other issues. If U suffer from sleep problems, mayB ask for a course of tablets to take mid-evening, you may find that 3 nights then a break will kick start a sleeping habit which helps.  It certainly did for me.  In fact, I found the tablets in the safe last month when having a look for paper work, going back to 2009.  So I certainly didn't get addicted ;-)

What treatment has been recommended for your sister, could you discuss with her Surgeon?

[Noheroicsplease]

My sister doesn't have the gene, so not sure that's relevant

Thanks

[Gnatty]

Some women who don't take HRT for reasons like you, are hugely helped by certain antidepressants which not only sort out hot flushes but also insomnia too. I don't know how you would feel about that? I think the one used most is venlafaxine which is an SNRI. Could you discuss with a gp/ expert on these matters?

[CLKD]

If there isn't a gene involved, in your position Noheroicesplease, I would go alone and talk to your sister's Consultant.

[Noheroicsplease]

@Clkd - with the greatest of respects, it's hard enough for a NHS surgeon to find the time to see their patients.

@Gnatty - that might be something I consider. I hadn't given that any thought. I'll look into it, thanks

[CLKD]

Sorry that I offered up advice. 

[Noheroicsplease]

No need to apologise at all - it was very kind of you - It just isn't plausible

[Carinda]

The consultant won't offer guidance to a non-patient I'm afraid. (and nor should they - but then you know that )

My sister and I have both had hormone receptive BC, and we have no gene abnormality. I dont say this to frighten you at all (as it happens neither of us were on HRT as both premenopausal), but I can certainly see where you are coming from and understand your choice as others in my family have made the same decision based on our experience. There is a view that some people are genetically susceptible, through simply having the same physical make-up and background predisposition.

I would recommend that you try ringing the helpline on Breast Cancer Now and talk through your query, they may be able to give more up to date advice on the HRT/BC dilemma. I empathise totally with your sleeping problem, I have exactly the same issue - and certainly don't get any sleep before 4 am despite feeling absolutely beyond exhaustion with only a few hours most nights. I am also having night sweats every night. I honestly have no advice on that, as haven't found an answer myself - I've tried lots of exercise and all sorts of changes to lifestyle to no effect. However, I am raising my dose of venlafaxine currently - as noticed that I didn't have so much sweating and bad sleep when on a higher dose.

[DS68]

Hi

Sorry if you have already tried this but I had bad anxiety 2 years ago along with inability to sleep well due to the anxiety I felt about having anxiety (chasing my tail constantly in this circle).
Anyway I tried different things and are healthy exercises etc etc but then I heard about the headspace app. It basically helped me break the cycle I followed each night and also had various options to help with sleep. Maybe give it a go, pretty sure they do a free trial and it's not overly expensive for the years subscription.  Hope it helps if you try x love and hugs x

[Noheroicsplease]

Thank you both for you advice - @Carinda, I'm so sorry to hear you have had ER BC. I'm also sorry about your sleep. It sucks. If I find anything that helps, I'll come back and find you!

[Carinda]

Thanks Noheroicsplease ! Last night I had to rely on half a sleeping tablet that I found in a drawer, its been there years but I needed a few more hours. I have tried mindfulness, and most things to be honest - and its not even as if I feel anxious. I don't know if you are the same, but it as if your body just doesn't have the capacity to close off. Often from 3/4 am I feel tired and can sleep but thats a hopeless way to impinge on your daily life by sleeping till late am. I once heard someone say that its kind of like teenagers, but in reverse: During and after puberty it has been found that their body clock just changes, and all the jokes about teeangers staying up late and sleeping till lunchtime aren't very fair. They are kind of being forced into it by chemical body changes. All not proved of course, that I know of, but I remember someone saying that the same can happen in Meno , like a puberty opposite sleep change.