Carcinoid Tumors

[livingwith]

My name is Catherine. I am 37 years old and in good health. I awoke one February day of this year to an inconsistent but persistent pain in the lower right side of my abdomen. My sister told me it could be my appendix. Sure enough, I looked up the location of the appendix (does anyone really need to know where the appendix is?) and it fit the location of my pain. Because it was not consistent, I thought that perhaps it would go away.
But the next morning when it was still there, I decided to dr...Read the full article

[Richie]

What a great story! I wish everyone was diagnosed early, but as you know most are not. I presented numerous times from 1988 to 2000 with "gut" pain and diagnosed with everything from gastritis to
prostate problems. Only when I got very pointed with a urologist, did they do a sonogram and found something in the liver which turned out to be mets from the small intestine.
Not only that, but mild aortic stenosis went to almost critical and cataracts formed and my teeth went to beyond bad. The major problem besides the valve is fibrosis. That can strangle blood vessels and create gangrene. But I'm just happy to wake up on the right side of the grass. Despite vision in one eye I'm delighted to be here. And one more thing, pain is like a person...if you ignore it/them, it
goes away. Ya'll keep the faith.

[nancybear]

Catherine, you are blessed to be free of the carcinoid. I am being treated for carcinoid and whoever told you it's not cancer must not be up on his facts. Carcinoids ARE cancer, but because of their slow growing nature were not always thought to be. Carcinoids originating in the appendix are a "good" kind to have because they rarely spread. It sounds like yours stayed in the general area, a very good thing. If you haven't had a 5HIAA 24-hour urine test you should have one to make sure no other teeny carcinoids are in your body. It detects a hormone they produce. And, if you haven't had an octreoscan, you should push your doctors to get one for you. It is a pain free nuclear test. One day one they inject you, then put you in a special scanner. You just lay there for about an hour. Then come back 2 more times over the next 2 days and they scan again. You can snooze or listen to music. The medicine in the injection (called octreotide) is only attracted to a protein unique to carcinoid tumors.
At the very least, you should have follow-up CT scans for a while to make sure you continue to be free of carcinoid. If your doctors haven't recommended any of this, I would find a new doctor. The Carcinoid Cancer Foundation web site lists experts across the country. No need to panic, just stand up for your right to get the best available advice!

[kristikls]

I don't know if you're still on this site Catherine but I'm very interested to see if you have any additional follow-up from your surgery that looks like it was almost a year ago. I too went into the hospital with what they thought was appendicitis and a week later after my pathology came back was told they had found a carcinoid tumor.

I'm 36 and have been experiencing extremem fatigue and some stomach upset but none of the flushing or other symptoms that seem to be associated with this. The surgeon from my appendectomy said that I needed to have my entire small intestine removed but I have found a neuroendocrine oncologist that I feel like I trust that I'm seeing again this week - but he has also said that he so far believes I need to have at least a portion of my intestine removed.

I'm confused as to how they can determine that more surgery is necessary before even running any additional tests...and it seems all I see anything about is surgery...I'm wondering if there is anyone that has done something other than surgery that has been successful to keep carcinoids from growing or coming back?

I'm still recovering from my appendectomy and if I do indeed need to have a portion of my intestine removed am wondering what kind of recovery that will be...any input on that?

Thanks for any support you have...it's definitely a wake-up call to be told you have something like this that is serious when both my and my family background is so healthy. It's so nice to find stories of people that have gone through the same thing.