This entry was posted by on Sunday, 30 September, 2007 at

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.

5 Comments to Carcinoids

  1. Karl Fogel says:

    October 1st, 2007 at 12:32 pm

    Hmm, did they have any forums where patients could present on how they managed their doctors and their diseases? Your mom, and another friend of mine, Biella Coleman, are both that kind of patient apparently scares some doctors: highly educated, scientifically literate, very knowledgeable about their own disease, all too familiar with the chain of misdiagnoses that preceded their current care and therefore no longer blindly trusting of medical professionals.

    In a way, the problem with these patients is precisely that they’ve acquired the same attitude about medicine that doctors have. These patients know we’re just making guesses, doing experiments, and fumbling around in the dark. It’s interesting that that makes some doctors uncomfortable…

  2. Maureen Coleman says:

    October 2nd, 2007 at 7:50 am

    I found Ben’s comments about the Carcinoid-Neuroendocrine Conference in Norfolk very thoughtful, and it was excellent to see someone who is a close relative of a patient try to undrrstand the disease as well as the psychology of the doctors who do need to learn how to translate medical terms into high level lay terms, and this is a new art i would think.
    One significant comment about Carcinoid Cancer and Neuroendocrine Tumours and Cancers.
    Carcinoid cancer is overwhelmingly malignant. I is far more than ‘sort of’ malignant. In most people it is slow, but in some it is aggressive and kills them within a year or so after diagnosis.
    There is an aggressiveness test called the ki67 and if it is high, it is a death knell. Iknow of one woman with a ki67 of 60% and she lived ess than two years after diagnosis, despite extensive consultations and treatments.
    Thank you very much, Ben, for your contribution to the awareness literature.
    The word neuroendocrine in just beginning to enter the doorway of medical consciouness and the next task is to steer it slightly further into the room.
    I had crabcakes for the first time ever in Norfolk.
    The website is just getting going by the way.
    Please check the left hand margins.

  3. Dann"Bear" Freeman says:

    January 19th, 2008 at 10:56 am

    Very good blog for your visit to conference,I think you picked up on the issues of some of it in your writing.I enjoyed the part where we always thought [so true it is] doctors know best……..well I guess they still do to a degree but I like your mom[ a good friend ] and may others had to go through the trials and tribulations of some docs DID NOT KNOW BEST! We slipped through some of the cracks of good or I should say proper health care and Diagnoses..which leaves many of us in a little bit worse off condition then we might have been………..but life goes on and we can’t really changed the past …its over,gone and done ….we can only try our best to live our life the very best we can with our health issues as they are all the while along with what we hope is a now good doc backing us as to keeping on keeping in our quality and quantity of life as it may be…….I think its very commendable for you as Dana’s son to be there with her and for her in her own way of trying to get more knowledge about this Cancer .
    Bear Of Ohio Living longer to make your day or someone’s

  4. jackr says:

    February 7th, 2008 at 8:42 pm

    Doctors, particularly those you deal with for routine check-ups or anything but major research center consultations, are the medical equivalent of “tech support.”

  5. Chuck Murphy says:

    May 13th, 2009 at 8:34 am

    Great Blog! I’m the spouse of a carcinoid patient and am following the learning curve. In defense of doctors – with whom I don’t often agree – I can say that I’ve met only one who was dishonest and manipulative and he had nothing to do with my wife’s treatment. Thanks be to God!

    Most doctors do their best but at times they’re like the blind man holding the elephant’s tail. They don’t quite know what they’ve got on their hands. And because they’ve only got a grasp on part of the problem they can only do so much.

    The web is a wonderful thing, however, and knowledge is power. We can only help we love by educating ourselves and our doctors. Most of my wife’s Doctors have been fantastic and they have all been patient and caring. If I have any fault with them at all it is in their hesitance to push harder for a diagnosis on a potentially recurrent carcinoid problem but perhaps it is because they don’t want to treat for what might not be a recurrence at all. We think “time is of the essence” and they think “first of all do no harm.”