Carcinoid Syndrome Support Group
Carcinoid syndrome refers to the array of symptoms that occur secondary to carcinoid tumors. Carcinoid tumors are discrete, yellow, well-circumscribed tumors that can occur anywhere along the gastrointestinal tract (GI). They most commonly affect the appendix, ileum, and rectum. These tumors are unique in that they are endocrine in nature.
Hello, im new to this forum but glad im found it as im hoping someone can shed some light as to what is going on with me...............Iam a 36 year old mum of 3 and about 3 years ago i lost 2 stone in 1 month and the problems started. had vague lower abdominal pain and facial flushing, had colonoscopy and laporoscopy all normal, few months later pain accross my back right side pins and needles and numbness, went to neurologist all tests normal. was refered to rheumotologist for auto immune issues, all bloods normal. xrays show hyperinflated lungs with hyperresonant notes and crackling was refered to gastroentologist for severe central upper abdominal pain, has ruled out gallstones....... Had upper endoscopy and a submucosal bump was found on the greater curvature of the stomach, ct showed thickening of stomach wall. The lump looked like that of a carcinoid tumor, but the gastroentologist said it couldnt be because the symptoms of diarrorea flushing wheezing etc can only happen if the tumor has metasasis to the liver and my liver was fine and refused the hiaa test.......so the Gastroentologist carried out endoscopic ultrasound which showed nothing the lump had gone??? have been told that it was probably the spleen indenting or another organ and no further investigations are needed, but im in soooo much pain, its difficult to exhale as the pressure and pain at the top of my abdomen is so bad, am taking co codamol, lansoprazole and recently anti spasm medication, but non of which seem to help.......my tummy gurgles and growls constantly whether i eat or not and the pain is so uncomfortable and I just dont want to eat anything, i have tried gentle excercise and eating small meals during the day and am very careful with my diet but I just get worse, im tired all the time and feel very groggy....i have followed the ibs rules and diets but they dont seem to help and it does not seem to fit the pattern of ibs.......Im desparate to get better but no one can help me right now so I just dont no what else to try.......I am also currently with a lung specialist as was coughing up blood in july, from tests etc my small airways are narrowed and have been given an inhaler....had a chest ct scan and there were no obvious tumors......My question is that in order to get carcinoid symptoms of flushing etc must it have gone to the liver ???? I am so worried that on when they have gone back and done the 2nd endoscopy with ultrasound, it has just been missed as I was constantly gagging and struggled alot ( not sure why the first one I was ok ). And is it normal for one organ to indent the stomach wall during an endoscopy ??????? thankyou so much for any help you can give me :)
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
My husband was diagnosed with carcinoid in 2009 already with mets to the liver. He has never once had any flushing. We had to keep going to the Dr. starting in 2007. If you feel something is wrong keep going, only you know when something is not right with your body.
Best wishes
They have a list of specialists and experts and there are some in England. I would go to an expert if your healthcare system allows it.
I would definitely recommend seeking further investigations, and to keep persisting. For me it took 12months to get diagnosed, for most it takes in excess of 5yrs.
If you do an internet search specific to "carcinoid syndrome no metastases" you will find that there are journal articles about this. This is particularly the case with foregut tumours (lungs, pancreas etc) and ovarian tumours, and in fact the flushes can be different according to whether the tumour is foregut or midgut. There are also some who have been diagnosed with small bowel tumours who don't have any signs of liver involvement. The problem is that the most visited websites and texts say that you don't get the syndrome without mets. They also say that once you have the syndrome you are unlikely to have more than a 5 year life expectancy (I think this number has been skewed by that fact that in the past it took many people in excess of 9 years to get diagnosed) - apart from the fact that I have had symptoms of the syndrome for well in excess of 5yrs, and I am very well with no signs of damage to my liver or heart, I have come across many people who have been living with it for 13yrs, and some even in excess of 20 years after diagnosis. On top of that, there are so many amazing treatments available today.
The really good thing about this cancer is that it is slow growing, so as frustrating as it is when the diagnostic cogs seem to turn so slowly....
And of course you may not have it at all...!
Hope this is helpful. Let me know if you want more info about the different flushes or different ways of getting diagnosed. Blessings, Lauri.