Carcinoid Syndrome

[falloutmommy]

In October 2008 (At age 24)  I was diagnosed with Carcinoid Syndrome by my internal medicine doctor, I was sent for a CT scan of my abdomen and pelvis and they revealed a small shadow on the lower part of my right lung, so I was sent back for a chest CT scan which showed a 5MM nodule on the lower lobe of my right lung.  I was sent for a Octreoscan which came back as the same..only the nodule on my lung. It was suggested to follow up with the CT in 3 months.  I was referred to a endocrinologist who said that he didn't handle carcinoid as it was a GI issue.  I was also referred to a Gastroenterologist who reviewed my symptoms and lab work (slightly elevated 24 hour 5-HIAA) and said "I have only ever seen this in people in their 50's and later, so I don't think you have this, it's probably just ulcerative colitis or something of that nature. (Basically telling me I was too young even though my lab work was positive and my symptoms were positive, which he didn't even consider since I was only 24)  

I had the follow up CT scan 3 months later and it came back much the same...just the nodule on my lower right lung, now 6MM (which my dr said could just be from the angle they did the scan) and the radiologists report was this the structure of the nodule showed the structure of carcinoid tumor ( I believe it was "star shaped" but I am not sure)   So my PCP said that we would follow up with another CT in 6 months (which will be in July of this year)  I am just not sure what to do about all of this.  I have read that the carcinoid syndrome is really rare with these tumors and I almost wonder if I have not been misdiagnosed, if so.. what else could this be?   I have the diarrhea, it is not bloody but often explosive and accompanied by severe stomach cramping.  I also have the facial flushing, I get short of breath often during these flushing episodes.  I have sharp stabbing pains in my right side just under the bottom ribs that happen about once a week that last for 1-10 minutes and hurt worse when I breathe (not sure if that is related or not)  

[CalGal]

Fallout, please do yourself a favor and seek out someone who 'deals' with carcinoid as a specialty and see them now. If the condition is carcinoid you can't afford to allow the doctors you're dealing with at this point to sit and 'debate' about is it or isn't it. You need to be very aggreassive about the situation. Please don't wait another day.