A Fine Specimen
A rare tumor places the author in an uncomfortable spotlight.
I was 23 when a three-pound tumor made me a medical celebrity. I hadn’t menstruated in more than two years. Thick, black hairs were cropping up all over my body. And I was pumped with more male hormones than a champion bodybuilder. The endocrinologist diagnosed an oncocytic adrenal neoplasm of indeterminate potential, meaning “You could have cancer. We just don’t know yet.” And my surgeon worried that the tumor was invading my lung and liver, endangering my life.
He didn’t fit the surgeon stereotype. He seemed to take a special interest in my case, perhaps because I was so young. But he was also fascinated by the rarity of the mass attached to my right adrenal gland that was churning out two male hormones, testosterone and DHEA. Mine was the second largest oncocytic adrenal tumor on record; fewer than 20 similar cases had ever been documented.
During the next two months, doctors pored over my body. I had exams followed by more exams, with a crowd gathered around my naked body each time. The endocrinologist even called in a medical student to inspect the size of my clitoris (so the student could see it had grown from exposure to excessive amounts of male hormones). I had been reduced to a specimen pinned to a table—not unlike the frog I had dissected in high school biology—except I was still alive. I could hear their comments as they poked and prodded my body parts.
Compared with what the doctors had anticipated, the surgery was simple. My vital organs were displaced but remained surprisingly intact. The surgeons sent remnants of the mass to medical centers across the country for analysis. Three hours later, I awoke to 25 residents and medical students firing questions at me. “Have you been feeling more aggressive? Have you experienced an increase in endurance or physical strength? What has your sex life been like? Is your libido through the roof?”
They cared about my symptoms, my diagnosis and my tumor—not about me. No one asked if I was uncomfortable, or scared, or if they could do anything to make this humiliating process easier. Never was that more obvious than when the kindhearted surgeon called a week later and asked me to come to his office to review the results.
When I entered the cold examination room, he said, “Your tumor was malignant based on size; it could recur. You don’t want to meet the man of your dreams, fall in love and wonder if it’s fair to marry him knowing you may not be around in three years.” (There are several criteria used to determine whether a tumor is malignant or benign. What I deserved to hear was “the mass was benign on all counts except for size.”)
My surgery was an experiment for him; it left me feeling more akin to that dissected frog than a patient with needs. Even today when I visit the endocrinologist for my twice-yearly hormone check, I get the sense that he feels lucky I’m his patient. Not because I always comply with doctor’s orders (though I try), but because I’m part of his research.
It has been more than 10 years since my surgery. My menstrual cycle has returned to normal. My femininity has been restored. There’s even a slim possibility that the DHEA—the so-called fountain-of-youth hormone—has tacked a few extra years on to my life. And like a celebrity, with every passing show, I’m even getting comfortable under the microscope.
First Person originates at the other end of the stethoscope, presenting essays and commentary from patients, consumers and other medical outsiders. Proto invites your contributions; please send ideas to the editor.