My life was upended for 35 years by a cancer diagnosis. A doctor just told me I was misdiagnosed.

[mahatmakanejeeves]

Inspired Life • Perspective

My life was upended for 35 years by a cancer diagnosis. A doctor just told me I was misdiagnosed.



Jeff Henigson in August 1986 at age 15 after surgery for a brain tumor. (Robert Henigson)

By Jeff Henigson
March 26, 2021 | Updated June 11, 2021 at 8:17 a.m. EDT

Correction: This essay did not clearly state that not all pilocytic astrocytoma tumors can be treated with surgery. These tumors can be life threatening and sometimes are treated with chemotherapy and radiation.

Ever since I was diagnosed with brain cancer at age 15, the probability of my survival has been stacked against me. Each birthday was preceded by a moment of dread, and this was the case one gloomy Seattle morning, three weeks before I turned 50. BBC News had featured a story about my teenage health saga on its homepage last year, and my inbox was suddenly full of messages regarding the calamity I’d managed to escape.

Most of the messages were congratulatory. Some praised God for my survival and hoped that I had too found faith. One I received about two months ago lacked the thematic optimism of the others. It was from a neuropathologist, Karl Schwarz, whose work focused in part on anaplastic astrocytomas, the cancer tissue found in my teenage brain. He said that in his 38-year career, he’d come across only three patients who had “survived well beyond the correct diagnosis-mandated bleak life expectancy; upon review, in two of them the diagnosis was erroneous.”

He finished his email, the language of which I found somewhat awkward, with a request for a phone conversation. I responded that I would soon get in touch.

{snip}

“There’s a third report,” I said, my voice cracking.

“Tell me.”

I read it to him. When I finished, he let out a long sigh. “This is the completely false diagnosis. It did not take place at your local hospital. Someone wanted a second opinion from a respected institution. The findings were sent to such a person. But in any case, he was wrong.”

No words came out of me. I felt the urge to scream and momentarily muted my phone. Tears came instead.

Schwarz sensed that I was suffering. “Your story is important.”

“Why?”

“Either outcome is deeply meaningful. If you survived anaplastic astrocytoma, then you are the outcome of a miracle of biblical proportion. If an erroneous diagnosis was made, which I think is what happened, then yours is an important cautionary tale. Pathologists, like everyone else, make mistakes.”

{snip}