Update on Carcinoid.

3 Posts | Page(s): 1 

Update on Carcinoid.

by CrystalRainbow on Thu May 08, 2014 08:06 PM

Quote | Reply
Well, I found out today my O scan is normal. I really am starting to think I may not have to worry about this Carcinoid thing, even though a "BENIGN" Carcinoid Tumor was removed from my stomach 2 years ago. No apparent spread, or re-growth. All tests are normal except for my Gastrin level, which is 1400 . My Oncologist is starting me on Sandostatin LAR, to try to bring down my Gastrin level. I will get my first injection on May 23rd. I am beginning to think I have more of a Digestive / Motility disorder rather than a real Carcinoid issue. I was not "told" per say, but from what I read, mine was probably a Type 1 tumor, which is the least aggressive. Any thoughts or comments? Can I let my "guard" down so to speak? I am still being monitored every six months. I have Gastroparesis, Autoimmune Atrophic Gastritis, B12 Deficiency. Thank you all, Victoria

RE: Update on Carcinoid.

by Unknown_Member on Fri May 09, 2014 02:49 AM

Quote | Reply
Good news my friend !!!!!! Xoxoxo carolyn

RE: Update on Carcinoid.

by dlind48 on Fri May 09, 2014 02:50 PM

Quote | Reply

I hope your experience is different from mine. I was having some digestive issues and a CT showed a mass next to my mesenteric artery which sounded the alarm for carcinoid.  All of my subsequent scans were negative for carcinoid (including 2 octreoscans), and my labs came back normal or only slightly elevated. I had an exploratory laparotomy to remove the mass, but turned out to be benign. What was discovered was carcinoid in my small intestine (they removed a foot of it) with metastases to some lymph glands and my mesentery, peritoneum, and liver. I wasn't prepared for that. I have been getting the Sando shots for almost 2 years now, and my disease so far has been stable.  I have never heard of a benign carcinoid tumor, so I think that would be quite unusual; however, if they got it in time, it is possible that you are cured. Have you sought a second opinion?

3 Posts | Page(s): 1 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.