I’m here at a Carcinoid conference in Norfolk, VA.
Carcinoids are a form of very-slow growing tumors that are “sort of” malignant — they fall into a blurry zone. They’re a special type of neuroendocrine tumor (NET) that usually appear in the GI tract (intestines, stomach, pancreas, liver). What makes them dangerous is that, being growths of of the neuroendocrine system, they eventually start to produce all sorts of nasty excess hormones. The excess hormones make people feel ill in various vague ways, and thus it usually takes many years before doctors diagnose the problem. They’re bad news in the sense that there’s no known cure: the most common treatments are usually injected counter-hormones to hold the tumors in stasis and/or counter the excess hormones being released. But yes, it’s still a terminal illness. Eventually, over many years, the excess hormones cause other organs to fail.
It took my mom at least eight years before her symptoms were properly diagnosed, and she’s been fighting the disease for the last six. As one of her caretakers, it was good for me to come to the conference and learn more about the disease.
Here’s the main thing I learned: the field of medicine is a big fuzzy space. Doctors may present a unified front when it comes to knowledge, but there are huuuuuge areas of medicine that still aren’t figured out. The media is usually focused on the pathetic state of U.S. health care system, or what the latest trendy health threat or cure is… but down at the most fundamental level, medicine is just another branch of science full of scientists making guesses and doing experiments.
This fact really goes against the whole culture we’re used to of “your doctor knows best, just do what she says.” When people are diagnosed with this rare disease, it usually takes many years before they get a correct diagnosis. And even then, a lot of doctors and oncologists are freaked out by patients being self-taught Carcinoid experts, when most of the medical establishment has barely heard of it.
This conference is crawling with a mixture of doctors and patients, and the presentations are really varied. Some of them are just medical researchers summarizing their latest experimients, reading long strings of jargon out loud (presumably to other researchers), while ‘normal’ folks fall asleep. Other presentations are geared to patients, with entertaining, grandstanding doctors cracking jokes and dispensing general advice.
Because the place is crawling with doctors, it’s fascinating to watch them interact. It seems like doctor-culture likes to make a sport out of diagnosing problems. Doctors love to quiz each other: at bars, in the hall, and especially in their presentations: “Hey! Here’s a case study: what would you do if a patient reported symptoms X, Y, Z?” They love to debate the possibilities, then reveal the magic door and show what actually happened. I’m suprised they didn’t start keeping score!
On the way home, I’m getting a crabcake at the airport.
