Chapter 9: Disappointing 3/30/17

Today Don had his “5-year follow-up” colonoscopy and they added on an endoscopy for good measure. He was due for this after his first colonoscopy 5 years ago, but after the discovery of NETs, the onco team definitely wanted it done, with hopes that we could find the primary tumor. The plan was the scope would enter “both ends” and identify the primary tumor that started all this mess. (You’ll be pleased to know, as Don was, that they use a different scope per entry. LOL.)

Unfortunately, nothing was spotted that appeared to be a primary tumor. With this disease, (or the version of this disease that Don has) sometimes the primary tumor can be microscopic, and it can start almost anywhere in the GI tract. (We met a patient last weekend whose primary tumor was on the outside of her small intestine. How do you find that?) The primary tumor is the “brains behind the operation” – it’s where the abnormal cell growth begins, and then decides to spread to another location. Oftentimes with NETs, the primary is small and stays small, but the secondary tumor(s) can be large, or multi-size. In  Don’s case, he has a larger tumor (chicken egg size) atop his liver, plus a few smaller lesions also on the liver. And it’s possible there are even smaller “seed-like” tumors that have not been spotted yet, although we hope not. (See earlier post about g-scans.) Welcome to the mysterious world of neuroendocrine cancer. Sigh.

Today’s procedures did find and remove a polyp, but the doc does not think it was anything unusual. There is also a “patchy area” which is unusual at the ileocecal valve (the valve that separates the small and large intestine) which is slightly suspicious. They also biopsied that, so maybe that will turn out to be something. We will get pathology reports in a week or so.

Ever the optimist, Don said, “Well, at least they didn’t find anything in my colon.” Yes … I’ll take that bit of good news. Fingers crossed for an enlightening pathology report.




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