Absolutely devastated to be told I have a rare carcinoid tumour, has anyone else had this?? Mine is in my small intestine apparantly and it's very rare. I'm only 31 and can't believe it.
I would like to say relax but I am not sure that is possible. I have a carcinoid in my small intestine. They found it in 2010. So I am doing alright with eight years under my belt. They keep telling me my treatment (Octreotide) is working and it is staying the same size.
However I frequently worry when something changes just incase. And I get down a bit sometimes especially when I think about it (like now writing about it).
But I am still fit and like an active life. Sport, partying and everything else. Love getting exhausted doing stuff. I still see I am healthier than people who don't feel they have to look after themselves. I think the propect of a limited duration makes me try to do everything now. I hate seeing people just ticking over because they don't have a egg timer on their life. Lucky them!
So all I can offer is you might have a longer time than they let on.
My endocinologist ordered a blood test last week for a tumour in the gut (his words) said that there were two that match symptoms but one could rule out straight away because of my adrenal levels. but mentioned neuroendocrine tumour of the gut. I don't know what the blood test looks for, it was fasting and the results take 4 weeks as it has to be sent away. Just wondering if these tumours would show up on CT with contrast (results today) or if they are too small initially,? the consultant said that if there was something within the mucosa it might not be seen. is there another type of scan that would show a NET in the small bowel ? If anyone can help with these questions i would be very grateful. [@karciw]
My endocinologist ordered a blood test last week for a tumour in the gut (his words) said that there were two that match symptoms but one could rule out straight away because of my adrenal levels. but mentioned neuroendocrine tumour of the gut. I don't know what the blood test looks for, it was fasting and the results take 4 weeks as it has to be sent away. Just wondering if these tumours would show up on CT with contrast (results today) or if they are too small initially,? the consultant said that if there was something within the mucosa it might not be seen. is there another type of scan that would show a NET in the small bowel ? If anyone can help with these questions i would be very grateful. [@karciw]
