I can answer this because my mother in law has a carcinoid tumour. I may waffle on a bit but the info may help you! She started with leg swelling and discolouration and was eventually found to have a carcinoid tumour on her ovary. She became quite poorly - losing weight, breathlessness etc and they suddenly sprung into action and removed it as they didn't seem to be doing much about it until then. This was around 5 years ago. It was found that she did have carcinoid syndrome (although as far as i know it was not elsewhere) and had suffered damage to her heart valve. She suffers isolated episodes of her heart beating really fast but she still is extremely active at 80 but she did suffer hot flushes daily ever since the op and we began to wonder if the tumour had been fully removed.

About 6 months ago she started to have a few funny turns and her leg became swollen again. Apparently her scan A YEAR AGO had picked up an abnormality (they scan her ovary area every year) but her notes were mislaid so she has just had another scan and she has a lesion on her ovary and now, small mets to her liver. She is receiving monthly injections to keep it in check and as far as i know the flushing has stopped and she feels fit and well at the moment. So yes - she has suffered similar and other quite severe symptoms at times with minimal tumour bulk x