Now I understand the terror

July 20, 2007

A cancer diagnosis threw this doctor's life into turmoil. It also forever changed his perspective on patient care.

In November 2001, I underwent an MRI scan of my brain as part of a workup for severe, recurring episodes of vertigo. When it was over, the reading radiologist told me that my brain and internal auditory canals looked normal.

"Oh, by the way," she added, "it looks like you have a mass in your right maxillary sinus."

This is the story of how my life changed forever. What I experienced not only changed me personally, it changed my perspective as a physician toward patient care.

The surgery consisted of a maxillectomy, resection of the hard and soft palate on the right side to the midline, resection of the nasal turbinates on the affected side, and resection of a portion of the eustachian tube on the right side. The result was a large defect in the roof of my mouth, and I was subsequently fitted with a prosthesis called an obturator. Without the obturator, my speech would be unintelligible and swallowing would be very difficult.

I had never thought that I would be diagnosed with cancer. There's no family history of it, and my family is known for its longevity. And I had never thought about dying before. But now, at age 59, I was suddenly eyeball to eyeball with my own mortality. And I was scared! For the first time in my life, I knew what it was like to experience anxiety. It was overwhelming, and it consumed me 24 hours a day. As a physician, of course, I had treated plenty of patients with anxiety, but I'd never really known what they were experiencing. Now I did.

Indeed, anxiety may be too mild a term for what a newly diagnosed cancer patient experiences. Terror is probably more appropriate. I was terrified by my diagnosis. I was terrified by the thought that I could die from this disease. And the anxiety never really went away. Every lab test, X-ray, CT scan, or MRI brought it back because I was afraid of what the results might show.

As a physician, I was able to get results of my tests almost immediately. But I wondered about those patients who have to wait days or sometimes a week to get their results. I began to appreciate the fear that would consume them.

What we as physicians may regard as a routine follow-up lab test, is a potentially life-altering event to a cancer patient. As physicians, we need to be sensitive to this and get reports to our patients as soon as we know results.

A month after my surgery, I began a series of 30 radiation treatments-five days a week over six weeks. Radiation was directed to my nose and throat and also to the area once occupied by my maxillary sinus.

During the first two weeks, I developed a few sores in my mouth, which were tolerable and didn't affect my ability to eat. After the second week, however, all hell broke loose. I developed a severe mucositis involving my mouth, tongue, throat, nose, lips, and eustachian tube on the right side. The pain associated with eating became so severe that it took as long as two hours to eat dinner. Anything acidic put my mouth on fire. I had to eliminate all fruit from my diet for four months. Even potatoes produced burning. The only liquids I could drink without pain were water, milk, milk shakes, and vanilla-flavored Ensure. Forget coffee, tea, or alcohol.

The ongoing changes in my mouth made the obturator fit poorly. So I began seeing a prosthodontist on a regular basis so he could modify it. Then I started to lose weight. To make matters worse, I developed a herpes infection in my mouth. I also developed an acute gastroenteritis, and I lost more weight.