Medicine is an art, based on science

Medicine is an art, based on science

When I was first diagnosed with bladder cancer, I quickly discovered that medicine is an art. It is, sure enough, an art that is rooted in science, but it is art nonetheless. Don’t get me wrong. The men and women who practice medicine immerse themselves in science, in evidence, and in research, but instinct and interpretation are critical to good practice.

Determining the stage of bladder cancer is one of its initial challenges, and under-staging is a notorious diagnostic problem. Standard care requires an initial surgery to remove tumors and then a repeated surgery to confirm that tumors have been removed. Both surgeries include biopsies and a determination of stage and grade by a pathologist.

As I recovered from the first surgery and prepared for the second, I immersed myself in research. I have access to academic sources at my university, which provided me a tonic of cool, distant jargon in place of the horror stories and tragedy easily available on the internet. Nothing soothes me quite as much as logical, scientific language that allows me to disassociate from fear and emotion, even if it is mostly impenetrable.

As I read about bladder cancer, I realized that my pathologist was one of the most important members of the team, and I didn’t even know her name. Pathology is unseen medicine that takes place in a lab. These docs look into microscopes and examine cells that, to my eye, are beautiful in their abstract shapes and colors, their swirls and variegations. Not every doc sees the same thing. Pathology is the art of interpreting evidence.

In the abstract, this is interesting, even poetic. In reality it was terrifying.

My diagnosis, and hence my treatment, depended on one doctor’s interpretation of microscopic cells. Not every pathologist would interpret them the same way.

The difference between Stage One and Stage Two bladder cancer is the difference between a medical treatment that is typically tolerable and relatively short in duration and a surgical treatment that is radical, requiring removal of the bladder and other organs. Five-year survival rates for Stage One are 88% and for Stage Two 63% according to the American Cancer Society.

In the face of these sobering statistics, getting a second opinion became all-consuming for me, and I was determined to get mine from Dr. Gary Steinberg at the University of Chicago because he is recognized nationally for his surgical skill and his research on bladder cancer. I assumed that his lab and his practice consulted with the best pathologists.

My HMO had other ideas and, after dozens of phone calls, rejected my request in favor of one of their network docs. In my opinion only a few doctors could be considered Steinberg’s peer, and this local doctor was not one of them.

When you feel that your life hangs in the balance, “no” is a hard word to hear. Cancer is a roller coaster of emotions for many reasons, and the paperwork and phone calls provide their own ups and downs.

It sounds so straightforward now, but at the time, these tasks felt impossible to complete. I had to call the University of Chicago, which provided a Patient Navigator, and the paperwork began. Records had to be requested and sent. My job was being the conduit between bureaucracies that were used to communicating through official channels. Insurance masks a lot of the records and paperwork exchange. When you’re operating on your own, you do every bit of it.

In the end, I paid for every penny of the second opinion and learned more about my insurance, bladder cancer, and pathology than I really wanted to know. In a second opinion I found confidence in my doctors and in my diagnosis.

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