Wow! Feb. 18, 2014, I got to see one of the few US doctors who treat only neuroendocrine cancer patients! Dr. Edward Wolin at the Samuel Oschin Cancer Center at Cedars-Sinai Medical Center, 8700 Beverly Blvd., Los Angeles, CA 90048.
I learned lots of new stuff and scheduled a definitive scan for March 5: Gallium-68-DOTATATE PET Imaging of Neuroendocrine Tumors.
No more Octreoscans for me. They really can't find a tumor less than 1.5 cm. The Gallium-68 scan is coming to more places in the USA in a couple years, and the Octreoscan will become obsolete.
First, new information: A carcinoid tumor in the proximal duodenum is different from the common ones in the jejunum or ileum. A primary tumor in the very beginning of the small intestine happens to only 1 in one million persons. That is why I can find almost no information on my tumor. There are 3 large distinctions between this foregut tumor and the common midgut tumors:
1. The biology is completely different.
2. They make different hormones. They do not make serotonin and 5-HIAA.
3. They spread differently.
I don't know much about the first or third fact, but I learned a little about the hormones. We don't have to pour pee into orange containers for 24 hours and bring it into the lab! (In fact, doctors can do a plasma 5-HIAA test for those of you who need one.) Gastrin is a hormone that is made by the duodenal tumors. We began testing mine soon after my diagnosis. Lately it has been normal, but sometimes it goes up. We also need to be tested for Chromogranin A, and other hormones I don't know yet. I won't know the other lab tests until I have some done.
For all of us noids, Octreotide reduces the production of pancreatic enzymes like lipase and amylase. Therefore we need to be on enzyme supplements, or we have diarrhea because we lack pancreatic enzymes.
Right this minute, I am waiting to hear back from the staff at Cedars-Sinai about scheduling an Eovist MRI. Eovist is the contrast that is injected and it produces a better image than the MRIs I have had in the past. Also, I will come into the Cancer Center for fasting lab work.
I will follow up with you soon.
Love,
Sharon
