Learning the hard way that there is an art to medicine

In med school budding doctors are told: “When you hear hoof beats, think horse.” The problem is that sometimes when you hear hoof beats, it’s a zebra, and when that “zebra” is a disease, your patient leaves your office misdiagnosed. I’m that patient.

In 1998 I had my first abdominal attack. I vomited for days and walked hunched over like a frail octogenarian. (For reference, I was extremely fit and twenty-seven years old.) The doctor in the ER determined from an endoscopy that my “stomach was paretic.” He placed me on a motility drug and sent me home the next day.

I had bouts of nausea and an odd pressure sensation in my abdominal upper left quadrant over the next year, but I was able to function well, so I simply accepted these sensations as my new “normal.” Then the vomiting returned in 1999. I had gallstones. After my gallbladder was removed I felt “better” once again.

A few years passed before my next major attack when I was back in the hospital getting a full workup: colonoscopy, endoscopy, blood tests, and a gastric emptying study. All came back normal—even the gastric emptying study. And yet, my new doctor stuck with the original diagnosis and put me back on motility drugs.

By the end of 2004, I suffered with a constant laser of pain shooting through to my back in that same left upper quadrant. The doctor repeated my tests and added in an abdominal CT scan. That scan showed “attenuation” on my pancreas, and so the doctor admitted me into the hospital for “pancreatitis.” He asked for an MRI to check whether I had an old gallstone lodged in my bile duct, and the radiologist found nothing abnormal. A couple days later I was sent home with a painkiller, Elavil.

I switched to a new doctor once again in 2006, and when my pain returned despite a daily dose of 50mg of Elavil, he sent me to get a repeat CT scan. He called me up a week or so after the scan and said, “Tracy, the mass that was on your pancreas two and a half years ago is still there.” My response: “What mass?”

As it turns out, that “mass” was a rare pancreatic neuroendocrine tumor. Had the tumor been removed before it metastasized, I would have been cured. But in the nine years it took the medical community to find it, it spread to my liver and chest.

We properly diagnosed the disease four years ago. Thankfully, since surgery to remove the primary tumor I haven’t needed to undergo any chemotherapy or radiation, but I will be a repeat visitor to cancer centers for the rest of my life. With any luck my disease will continue to remain on “time out” as I like to say, and if not, there will hopefully be a new treatment on the market that won’t do too much harm to my body.

I’ve learned the hard way that there is an art to medicine, but what if my doctors had been more open to thinking outside of the normal “horse” conditions? Would I have cancer today?

Tracy Krulik is a cancer survivor who blogs at I Have Cancer. And I’ve Never Felt Better.

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  • http://twitter.com/oregonamybaird Amy

    This hits very close to home for our family.  My son was diagnosed with eosinophilic esophagitis about a year ago.  He had suffered with varying degrees of reflux symptoms for at least 4 years.  When we would ask our pediatrician and his asthma specialist about seeing a pediatric GI we were told repeatedly, “This is reflux and you’re going to put your son through unnecessary procedures and not learn anything new.”  Finally, we insisted that we be referred to a pediatric gastroenterologist.  He had a very abnormal esophagus at his first endocscopy.  We’ve been fortunate in that we have only had to eliminate dairy to have complete resolution of symptoms and a normal scope 3 months later.  It is still very hard for me to think of the years my son suffered.  I question myself as a mother and whether I could have advocated harder for my son and that I followed the lead of our medical team too closely.

    • Tracy Krulik

      We’re learning the hard way that we as patients, or advocates for patients, have an important role to play in our health care. I’ve learned to listen to my gut. I can now tell if I need to push for more  answers to a problem. My guess is that you’ll do the same. When something doesn’t feel right to me, I question the doctor, and if it still doesn’t feel right, I find another opinion.

      I’m happy that you were able to help your son find the root of his problem and that it was a simple fix.