carcenoid syndrome

[Goodgal]

thought people might be interested to read this--the major symptom when you read stories from people diagnosed after a long time, is that their doctors all presumed that it was anxiety related or --as the trendy terminoligy now has it--suffering from "panic attacks"

The cardinal symptom of carcinoid syndrome is flushing attacks. These occur in 25?75% of patients initially and in a higher percentage at some time during the course of their disease. Flushing may be spontaneous, or it may be triggered by stress, alcohol, exercise or consumption of certain foods, such as cheese

go to http://www.oncologychannel.com/cancermalignancy/index.shtml

or http://home.att.net/~S.L.Anderson/   for more info

[Kat2u]

Carcinoid syndrome is pretty darn rare, fortunately.

[lilcat]

i had a carcinoid tumor removed 6 years ago, and it took 3 years of hellish doctor visits, i was told the reason i lost weight was i was nervous, ummmmm hello i said to them the reason im nervous is, im bleeding, i cant eat, im losing weight, im weezing and im and flushing everyday. i went to another doctor who immediately said we are going to run all kinds of tests on you, which he did and  bingo my 5hiaa was high. had carcinoid removed, then 2 years later had another one removed from my rectum. i am doing fine now, i just have to be really careful what i eat. also i dont think carcinoid is as rare as they say, go to the post sites on carcinoid, there are tons and tons of people with it. i just want to say if anyone is having symptoms that you know are not stress related please by all means find a doctor who will listen to you, and not brush you off, saying it is stress. good health to all!

[eurika]

The reason that Carcinoid is considered rare is the fact that it can take years sometimes before the diagnosis is found.  There are a lot more people out there with it and go undiagnosed for years.  If it was something easily diagnosed, then I bet doctors would be surprised that Carcinoid really isn't that rare.

[Kat2u]

It is easily diagnosed, if they care to look for it! A simple, 24 hour urine collection will find it.

[hotinflaf]

what is "flushing"????

[eurika]

Yes sometimes the 24 hour urine will identify the carcinoid, if the levels are high enough.  That test misses about 60% of carcinoids. There is a great forum on Carcinoid, and carcinoid syndrome.  There you can read people's stories,and see that alot of the time these people were not diagnosed for years.  One thing seems to link them, that most of them were told for a long time that they had IBS, or anxiety disorders.  If doctors were more knowledgeable on carcinoid and the symptoms they would test patients for this if they had the tell-tale signs.  A friend of mine who is an internist said that a 24 hour urine, and a few other tests were needed to diagnose carcinoid, and sometimes it took actual exploratory surgery to find the tumors.  Sometimes they are to small to see.  An intresting fact I found on Carcinoid, is that by a statistical count, 1 out of 300 appendixes removed- a carcinoid is found.  Weird huh.

[sdftrd]

About four years ago I had my appendix removed, and the pathology report found an adema carcinoma inside the appendix.  I didnt have the usual signs of appendicitis (no nausea, vomiting, fever), in fact I had an appetite, but my right side was tender.  The pathlogy report confirmed the tumor.  During the next few years, I have been experiencing what I am assuing is IBS; shortly after a meal, I frequently have a need to emply my bowels, and the feces is usually somewhat runny with small clumps.  Occassionally, too, I will have hard feces.  I wonder if carcenomas are inside my intestines.  Does anyone have any thoughts?  Should I have a colonoscopy done?  Thanks.

[bee562]

A related discussion, what diet for carcinoid syndrome was started.

[kezawallace]

A related discussion, ongoing tests for carcinoid was started.