Tamoxifen thirst - does it always mean it has spread to bones?

Hi everyone, 

I recently started tamoxifen, am getting towards the end of my herceptin after surgery and chemo and my cancer was not thought to have spread, although some cells did make it to lymph one. When I started tamoxifen, a severe thirst started and also confusion. I wondered if anyone had this without it being in their bones, because I read that thirst and confusion/dizziness on starting tamoxifen can be a sign that it has spread to the bones. I just wanted to know if it is possible to have the thirst without it necessarily meaning the worst. Having a bit of a panic tbh! Just got my life back to some sort of normal and really scared that it will all be turned upside down again.

Hi betblack ,I ve not been on here awhile, Im currently on tamoxifen and have never read or heard of thirst or confusion , meaning cancer has spread to the bones . I think you need to consult your GP … Kes

Thanks guys.

The confusion was quite severe though - I was literallly too scared to drive, which has never happened to me before - and I am six months after chemo and it was only day two of tamoxifen. The dry mouth thing scared me more when I read that those things, along with stomach pain can be caused by calcium getting into your blood, and that can be caused by tamoxifen if you have bone mets. I had all the above when I started the tamox. It is reassuring though to hear that these things can happen without it necessarily meaning the worst! On the bright side - no hot flushes as yet! I’ll chat to the bc nurse tomorrow and see if I can chat to an onc if there’s any doubt. How come these things always come up at the weekend hey so there is plenty of time to worry yourself silly before talking to a professional?! Ha. I really appreciate your responses ladies. Thank you and be well and happy x x  

i’ve been taking tamoxifen since 2012 following masectomy chemo (fec T) and radiotherapy,i had reconstruction in 2013 and my 2year check up was clear yay!!  i still get bad joint pain especially the knees they feel really weak (possibly trying to hold up my increased weight gain) i also feel a bit ‘wooly headed’ and like butterfly i work with mental health and people with dementia and find myself needing to follow my own advice and write everything down which is useful (until you forget where you put your list) it does make me feel stressed tho’ that i am going to make some error,  I was hoping someone could help answer how long do these effects last and is it from the treatment or worse is it just me