Cancer update - 11/20

Well after a lot of discussions and fussing back and forth between my primary and Moffitt, I was given the green light to meet with a local gastroenterologist who is qualified to do both a colonoscopy and an ileoscopy (scope of the ileum -- the final third of the small intestine leading into the colon). I had a consultation with him this afternoon.

I learned that his practice is both gastroenterology and hematology/oncology, so he knew about neuroendocrine tumors. He said that the doctors at Moffitt will likely continue to try and try to find a primary tumor because neuroendocrine is a broad category. There are types of neuroendocrine cancer, which is determined by biopsy of the primary tumor. He said that it is common for doctors to run a series of octreatide scans over several months in hopes that the primary will show up. My understanding is that the octreatide contrast is drawn into the cancerous cells. He says the primary can sometimes be just a few cells, which is why it can be hard to find, but with continued uptake, they often show up.

The doctor believes that the colonoscopy/ileoscopy would not be the best first choice for me. I had a colonoscopy in January 2008 which came back fine, and the ileoscopy cannot travel all the way through the ileum, which is the most common primary site.

His suggestion is to do a Capsule Endoscopy. This is a procedure my PCP and I had discussed, but he felt insurance wouldn't go for it due to cost, but the doctor says they WILL get clearance for it from insurance. This is the procedure that I described previously as a "Video Endoscopy". You swallow a capsule with a camera in it that travels through the entire digestive tract and takes approximately 50,000 pictures as it travels. This is the only way to see the entire small intestine. The only down side is that it is video only, so no biopsies could be taken. The up side is that it is far less invasive and the prep isn't as bad as for a colonoscopy (anyone who's had one of those knows what I mean). I have to be on a low fiber diet for the weekend and clear liquid diet on Monday. There is some prep but it's not as harsh as for the colonoscopy, the nurse said.

They will get insurance squared away on Monday, and I have an appointment this Tuesday (11/24) morning. I report to the doctor, swallow the pill, and am hooked up to a "belt" which I must wear for 8 hours. The nurse likened it to the halter monitoring that is used for heart patients. The belt is on the outside of my clothes, so the nurse said I might get looks, but I can otherwise perform normal activities while I wait (except for eating which is kept at a minimum). I report back 8 hours later when they will disconnect the belt and begin to process it. He said it takes several hours to analyze, but they should have the results back on Wednesday or Friday.

I have an appointment the following Monday (11/30) morning to discuss the results. The doctor says this will give us time before my Moffitt appointment on 12/11 to get something done. If anything shows up, he can then attempt to go in and biopsy it. If something shows in the colon, he will go via colonoscopy. If something shows in the upper, he will try via endoscopy. If it's in a place that neither can reach, then the only way to get to it would be via surgery, but we'll cross that bridge when and if we come to it.

So I may in the end still have to have a colonoscopy or similar scoped procedure, but the doctor feels this is the best first step, and I know from my PCP that he feels the same way (he just wasn't sure if insurance would approve), so we're heading in the right direction.
 
Thanks for your continued prayers, thoughts, and support.