Common Zebras

Cue obligatory post about being angry...but anger transforms into action....

One of the greatest gifts I have been given this week has been the opportunity to speak with other carcinoid patients.  In the carcinoid community, it's common knowledge that diagnosis takes about 9 years, with symptoms of vague abdominal pain, and batteries of tests that find nothing.  This "common knowledge" has always floated around in my head as an abstract idea.  Oh sure, I think, we've all been down this road.

Let me tell you though, we've all been down this road.  I have spoken with 3 patients in the last week, and their stories were all the same.  Like exactly the same.  Like gave me goosebumps.  Patient has vague abdominal pain and sees doctor who diagnosis them with acid reflux.  Here, take some prilosec. Or patient has chronic diarrhea and is diagnosed with IBS.  Here take some immodium. This cycle continues until the pain gets worse.

When the pain gets worse later in the game (usually caused by mild bowel obstruction), a patient might seek treatment in the ER. Usually, an ultrasound is ordered because gallbladder problems are suspected.  Ultrasound finds nothing.  ER refers patient to a gastroenterologist.   GI doc will do an upper GI...and will find nothing....because the tumors grow on the outside of the organs, not on the inside.

One patient told me she had been going to the doctor for years, and they never ordered a CT scan.  She just figured since they didn't order one, she didn't need one.  It was only after she got a CT scan that things became clear.

I get it, I understand that doctors are busy, and "vague abdominal pain" just isn't enough info to go on for a diagnosis.  But when you have a repeat customer with vague abdominal pain, there needs to be a protocol in place for looking into Carcinoid.

medical students are taught the adage, "When you hear hoofbeats, look for horses, not zebras," which means look for the simplest, most common explanation first. Only after the simplest diagnosis has been ruled out should the clinician consider more complex or exotic diagnoses.

I understand that docs use their differential diagnosis system, and they look for the most common cause first.  Diarrhea?  Let's just call this irritable bowel.  Maybe it's time to call bullshit on Irritable Bowel Syndrome, and call it "Let's just wait and see what this develops into."

Part of the responsibility lies with the patient.  I had been going to a certain medical group for about 10 years.  They were great.  They brought a new doctor into the group, and she wasn't so great.  The first time I had abdominal pain (and couldn't eat because of it), I went to her and she told me to take prilosec, get an upper GI, and ordered a ultrasound.  Ultrasound showed enlarged and fatty liver, so I went to a liver specialist.  He told me to take prilosec, stop taking advil, and eat better.

When my pain reoccurred, I returned to my doctor and requested a CT scan.  She said there was no reason for that.  That was the day she was no longer my doctor.  If you have a doctor who is not giving you what you need, and asking the right questions, and not doing what you need them to do, run like hell.  Your doctor works for you.  You should not be afraid to ask them anything.  You should not be afraid to tell them that you think it could be carcinoid.  And if you have a good doctor, they will listen to you, and help you figure out what is wrong.

Take it from those of us who have been there.