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.

0 Online
0 Online

Normal 5-HIAA & Cga with confirmed stage III

Hi All!

From what I can tell from the articles, studies, and documents that I've read, there are are 25 - 35% of us who have normal serotonin levels AND carcinoid cancer. .. even carcinoid syndrome.

I'm proof that it happens. 2 weeks before my surgery - normal CgA & 5-HIAA labs. Surgery - 2.5 cm midgut (ileum) carcinoid tumor and 9 lymph node invaded with carcinoid cancer.

As a side note... many CT's were normal too. ONE CT happened to show a little bit of a thickening of the wall of the ileum. It was almost overlooked. Octreotide scan showed the primary tumor, but none of the lymph nodes.

My oncologist believes I have had carcinoid syndrome since 2004, even though no tumors are showing up yet on the octreotide scan (which looks for serotonin producing tumors - which apparently mine don't). I started Sandostatin yesterday.

Anyway - remember, not all tests are 100% accurate or full-proof.

Replies

deleted_user
deleted_user

Thank you for this article about the 5-1HH lab I have had the symptoms of carinoid for a long long time, finally I was given two Chromogranin A tests a month apart, both extremely high. Consiquently my doctor said i was fine. I wanted another doctors thoughts on this. So this tuesday i'll be haveing anothe test which supposidly will tell me one way or another. If anyone has any ideas or thoughtsregarding this situation please let me know, as I really feel all alone here.
deleted_user
deleted_user

I am still in the early diagnosis stages. I have an elevated Chromogranin A. I've had symptoms for years but have explained them away until the big "D" hit me a year ago and became almost debilitating. That's when I started having other symptoms as well. I have many of the Carcinoid Syndrome symptoms. Infact, I just had my ovaries removed a month ago and was told by the doctor that I had LOADS of adhesions (they were attaching my ovaries and small intestine to the cervical cuff and he released the intestine for me) and that I had large strange scarring. I just read on the following website: http://www.abdopain.com/symptoms-of-carcinoid-syndrome.html that adhesions can also be a problem with carcinoid. RN4HIM200 I would most definitely get another opinion. I have seen more doctors than I can count on my two hands in the past year. Most doctors really don't know Carcinoid. Although some will claim to. Do your research and keep pushing until you find a doctor willing to help you find your answers. One that recognizes an elevated Chromogranin A as a marker of Carcinoid. I've read that the only other reason that could be high would be liver disease, inflammatory bowel disease, renal insufficiency, and with stress. So go from there and good luck to you.
deleted_user
deleted_user

I am new and very excited to here your tests results are very similar to mine. My tests were normal. Even my Octero-scan came back negative. Yet, I had 8 tumors found when I tested at the National Health Institute.
deleted_user
deleted_user

Rica,
How did they find the tumors? I have carcinoid syndrome, CgA came back slightly elevated but Octreotide Scan was fine. I've contacted a Specialist in New Orleans and he's going to help me but we have not done anything YET. Just curious how your situation came about.