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.
Hi I am really sorry to hear about your diagnosis, it must be very worrying for you and I hope that you are getting the emmotional support that you need. I was wondering if you wouldn't mind sharing a little about your journey and symptoms as I do know from my own experience that sometimes a rare cancer is not obvious. I have a glioma in my optic nerve intracranial but initially was passed over because so rare (that was A few years ago and diagnostics has moved on) it is stable and I have yearly checks. The reason I have asked about your small bowel is that I have just had a clear colonoscopy and now awaiting urgent CT of upper GI and GI including small bowel. My symptoms were a four week and ongoing change in bowel habit, several positive fecal occult blood tests, chronic bloating, very loud bowel sounds and chronic tiredness. Sorry if I am being intrusive and so sorry to hear about your diagnosis. take care.
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]
sorry to hear your bad news, my husband has just had bad news he has cmml blood cancer, he has never been ill, so a big shock, his brother and sister are not a match, and Anthony Nolan can't find one at this time, I think you have to get up every day and try to enjoy each moment with family and friends as non of us really know what's around the corner, and yes how ungrateful some people are to just take for granted there health.
hopfully mind over matter, you must think positive every day and keep strong, wish you all the very best.
Hello to all, I have a very unusual update that I.m hoping someone can help with. In June 2020, 2 years on from initial symptoms. I had a water deprivation test for suspected and the confirmed diabetes insipidus (pituitary damage from radiotherapy) At the same time they did a catecholamine test because of ongoing symptoms of a pheochromocytoma (my dad had one and I have an optic nerve glioma) the test results came back with a very high level of methoxytyramine (metabolite of dopamine) uregnt cT requested but a longer wait due to covid issues at the hospital. Adrenal cT came back normal however because of the methoxytyramine level a gamma tekrotyd scan was ordered, they couldn't do an MIBG because of a concern with my blood pressure. Phone call from endocrine consultant on Friday morning, the scan has found something in the abdomen (apparently Tektrotyd like to stick to pheo paraganglioma) I am now having a CT on tues coming. My question is why would I be having a CT after the gamma scan, I completely forgot to ask. The consultant did say something about overlaying the CT on the gamma scan. I would be very grate ful to hear from anyone who has gone through this process with the scanning and who has been diagnosed with pheochromocytoma outside the adrenal glands (The endo referred to paraganglioma) been a long 2 years to get to this point of slowly getting more poorly with bp, sweats, tachycardia.
