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.
I have been physically sick for several years although I am only 24 years of age. I have had scan after scan, test after test, and they have not given me any answers until recently. Starting before Thanksgiving I developed a cough, congestion, and wheezing. I was given antibiotics 3 times between November and January and it never fully went a way.
I went to the doc on a Friday with the same recurring symptoms and he did an x-ray and told me it was fine. A week later I get a call saying that something was not right on the x-ray and to go get a ct scan. I had a ct-scan the following morning which was a few days ago. I got the call not even an hour after the scan and the doctor said its not good news-"there appears to be a carcinoid tumor on your aortic arch it may not be cancer but that is what it looks like I am referring you to a thoracic surgeon."
WOW! I am only 24 years old, have two small boys and just started a brand new job and get this news. What do I do and where do I go from here? My appt is not until Thursday-4 days from now and I have been in extreme chest pain with coughing, wheezing and hoarseness. I have read that ct scans are effective in diagnosing carcinoid tumors-shouldn't I see an oncologist or just wait and see what the surgeon says? The nurse had actually went through the same thing and they did open heart to remove the tumor and she is now fine. My doc actually told me to research carcinoid tumors and everything makes sense. I have had flushing, abdominal pain, diarrhea, swelling,etc for quite a while-and I know that means syndrome or metastasis.
I NEED ADVICE AND SUGGESTIONS, SUPPORT....PLEASE HELP THANK YOU!
I went to the doc on a Friday with the same recurring symptoms and he did an x-ray and told me it was fine. A week later I get a call saying that something was not right on the x-ray and to go get a ct scan. I had a ct-scan the following morning which was a few days ago. I got the call not even an hour after the scan and the doctor said its not good news-"there appears to be a carcinoid tumor on your aortic arch it may not be cancer but that is what it looks like I am referring you to a thoracic surgeon."
WOW! I am only 24 years old, have two small boys and just started a brand new job and get this news. What do I do and where do I go from here? My appt is not until Thursday-4 days from now and I have been in extreme chest pain with coughing, wheezing and hoarseness. I have read that ct scans are effective in diagnosing carcinoid tumors-shouldn't I see an oncologist or just wait and see what the surgeon says? The nurse had actually went through the same thing and they did open heart to remove the tumor and she is now fine. My doc actually told me to research carcinoid tumors and everything makes sense. I have had flushing, abdominal pain, diarrhea, swelling,etc for quite a while-and I know that means syndrome or metastasis.
I NEED ADVICE AND SUGGESTIONS, SUPPORT....PLEASE HELP THANK YOU!
deleted_user
HI, I know all too well how you feel. I too was diagnosed with carcinoid at age 29 that was almost 7 years ago. My advice to you is do what the Doc's tell you to do. I have carcinoid in my pancreas, liver and small intestines. They also see a small nodule I believe is what they call it in my chest. Hang in there. Where are you from? Where are you going for your treatment? It is good you have a specialist in this tumor/cancer. But it sounds like you have the classic symptoms of carcinoid. I had an octreotide scan, they give you octreotide which is nuclearized and if the tumors light up on the image it means that they have the receptors for Sandostatin or known as Octreotide. This medicine helps stop the carcinoid syndrome. I am sorry if you already know this information, just trying to help you. Please let me know how your appointment goes. Hugs to you! Carrie
deleted_user
I was recently diagnosed with metastatic carcinoids and they found the tumors when I went for a sonogram. They can more than likely find them on a CT scan as well. I would definitely get a second opinion before going for any surgery. A specialist in carcinoids would be best. Perhaps you can contact a good teaching hospital where you are to get a specialist or see if one of the hospitals like Mayo Clinic, Dana Farber or Memorial Sloan Kettering can refer you to someone in your area.
poorlygir4l
I had a CT Scan a few weeks ago and I was told it was normal. I went the other day to see the gastro and he told me that I had fibroids in my uterus. Now he informs me that I have a suspected carcinoid and I have to have the 24 hour urine test. He mentioned a scan but not which one. What happens in that Octreotide scan? Im in so much pain with my stomach. I have wheezing due to asthma. Please get all the advice you can from doctors,hospitals and online and get them to help you decide on the right treatment,surgery.
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