6:45 a.m. In order to understand what makes carcinoid/NETs so difficult to detect, we need to talk a little bit about how the disease works. I will keep this pretty simple, knowing that for some of our audience this is new ground. Neuroendocrine tumors--thats what the NET stands for--can form anywhere in the body. Usually, they form somewhere that excretes hormones or peptides--but they dont have to. The primary tumor generally stays pretty small. Most never get much bigger than the size of a lentil--and they dont show up well on most scanning methods. In Janes case, the primary tumor looked like an imperfection in the scan in the area around her appendix. But their small size doesnt make them less dangerous. The primary tumor can play mother to dozens of equally small tumors scattered throughout the body. And when a tumor begins growing in the liver, it can get quite a bit larger than a lentil--doing severe damage to the liver in the process. And just to further complicate matters, the tumors can manufacture any of the more than 24,000 hormones and peptides the body produces. Those extra hormones can play hoy with the bodys internal chemistry in lots of different--and unpleasant--ways. Janes tumors produced an abundance of extra serotonin--a hormone that controls blood pressure, respiration, sleep and digestion. She suffered from constant diarrhea and insomnia. She dealt with the effects of low blood pressure--she could pass out just from standing up too quickly. Her rapid digestion of her food meant she was not getting as much nutrition from her food as she should have been getting. That left her rail thin. She suffered excruciatingly painful bloating and gas that further exacerbated that problem because she often didnt feel like eating. At the time, we had just one test to detect excess serotonin--a 24 hour urine test. Today, we also have a blood test, but it is not quite as reliable as the urine test. But at least we have a test. For the vast majority of 24,000 hormones and peptides, we have no tests at all. Even if we did, testing for all 24,000 is not something any doctor would order. And some NETs appear to produce no hormones at all. One of the Holy Grails of carcinoid/NETs research is finding a reliable and simple way to test for it. We dont have one yet--but we are working on it. We are also looking for new ways to use radiation to spot the tumors. The best we have in general use right now is called an OctreoScan. But a new method using gallium-68 is in the trial stage and shows great promise for some tumors. Last year, I sat down with Dr. Matt Kulke and Dr. Jennifer Chan at the Dana-Farber Cancer Institute in Boston to create a video on frequently asked questions about NET cancer. You should go check it out on YouTube now. https://youtube/watch?v=BSkNdh5B11c
Posted on: Mon, 10 Nov 2014 12:32:57 +0000
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