The Moment When a Brain Surgeon Sees the Most Terrifying Diagnosis in Medicine

He glided into my office in patent leather shoes—shiny, brown, and freshly polished. His socks, a bright mustard, perfectly matched his tie as well as his handkerchief, neatly folded in his left breast pocket. Light blue pinstripes ran vertically up his gray blazer, drawing my gaze upward towards his healthy, tanned face. No surprise, his teeth were ivory and straight, almost as white as his pants. Not a hair was out of place.

He was charming. He was Italian. He lived a part of the year in New York but most of the time in Florence. His heavily accented baritone was rich and smooth but also cheerful and full of life.

He sat down across from me, his wife by his side. They did not look their age—early seventies if I had to guess. But I didn’t have to guess, since his chart was open on the screen in front of me. As I sat there typing notes, my head bobbed up and down, alternating between making eye contact and doing my best to avoid hitting the wrong keys.

I tried to gently nudge the flow of the conversation toward the reason he was there: his symptoms. “When did the weakness start? Is it only in the foot or also the leg?”

The man had other plans in mind. He didn’t have time for illness. He first needed to let me know that he had come from nothing. His success had been earned through hard work. His wardrobe was emblematic of that. The beautiful fit and fabric of his shirt hugged his chest like Olympic gold medals, arranged for all to see. He boasted. He wanted me to know that he was not just any patient.

I wanted to know if he was right-handed or left-.

He told me what motivated him, what made him rise early every morning and kept him moving forward.

I asked him if he’d ever had a seizure.

He vividly described a memory from his childhood—why this memory at that moment, I could not fathom—in which he had walked past an old man sitting in the subway who was wearing worn, tattered clothes. In his outstretched hand the man held a tin cup full of pencils that he was selling. Pencils! Can you believe it?

My patient swept his outstretched fist in a circle mimicking the beggar. He didn’t want to end up like that, alone in the subway, selling pencils, he said. His eyebrows danced as he spoke. Then he smiled and paused, as if waiting for me to respond.

I politely excused myself to look at his MRI scan, which I was loading from a CD onto the computer down the hall. As I scrolled through the images, I knew right away what I was looking at. When you’ve seen as many malignant brain tumors as I have, you just know: the sharp contrast between the white outer border—the periphery of the tumor, highlighted by the contrast agent—against the dark inner core, devoid of anything except dead, necrotic cells.

These tumors tear through the brain like a swarm of locusts devouring everything in their path, moving so quickly they outrun their blood supply, as if growth were more important than life itself. They say that sharks die if they don’t keep moving. Malignant brain tumors are worse. They keep moving until you die.

I went back into the room and sat down. He was still smiling at me.

I thought: Where do I begin?

Glioblastoma multiforme might be the most terrifying diagnosis in all medicine. GBM, as it’s more commonly known, is one of the deadliest forms of cancer. Without treatment, the average life expectancy is around four months. This evil villain’s superpower is its shape-shifting ability, which in biological terms means a rapid mutation rate that allows it to evade the entire arsenal of sophisticated weaponry at modern medicine’s disposal, including surgery, chemotherapy, radiation, immunotherapy, and anti-tumor vaccines.

GBM is the fourth and most nefarious stage of a tumor called a glioma, since it arises from the glial cells that normally surround, protect, and sustain the neurons, the cells that perform the computational work of the brain. Glial cells, when functioning normally, are nurturing caregivers to the neurons, attending to their every need like dutiful servants.

But when they are angry and transformed into tumors, they spread through the brain like lava rolling down the lush green slope of a volcano, incinerating everything in its path.

In 2017, the New York Times ran an article entitled “The Brain Cancer That Keeps Killing Baseball Players,” which raised the ques­tion whether there was link between the artificial turf in Veterans Stadium and GBMs. What motivated that investigation?

After the death of former catcher Darren Daulton of a GBM at age fifty- five, his team, the Philadel­phia Phillies realized that he was one of a series of four players with the same diagnosis, all of whom played on that turf between 1971 and 2003. A cluster of brain tumors also felled several members of the Kansas City Royals when they, too, played on a similar artificial turf.

No link was ever found.

In 2022, a husband, his wife, and one of their siblings living in New Jer­sey were all diagnosed with brain tumors. They began investigating a pos­sible environmental link. They turned up over one hundred cases, all from students and staff who had worked at or graduated from Colonia High School. Environmental experts were brought in to search for a cause.

These cases occurred over a forty- year period. In 2021, Colonia High School contained 1,335 students, or 333 students per class. Over forty years, we’d expect 13,350 graduates. If one in every one hundred and sixty-one students develops a brain tumor—the known incidence in the general population—then we would expect eighty-three brain tumors coming out of Colonia High School, which is not very far off from what was observed. If you include the administration, teachers, and maintenance workers over that same period, it more than makes up the gap.

It’s human nature to look for causality when it comes to illness. Finding a cause for meaningless tragedies makes us think we can stay safe from them, or so we tell ourselves. We don’t want to accept the unsettling fact that disaster lurks around every corner or all of us—no matter how care­fully we try and avoid it. There is often no rhyme to our body’s treason. It’s neither punishment for bad behavior nor retribution for unpopular opin­ions. Sometimes it’s just bad luck.

A few minutes into my morning rounds, I stopped by to see my Mediterranean patient. It was the second day after the operation, “post-op day two,” as we call it. The operation had been “successful” insofar as such an operation could be. What I could remove of the tumor was out.

The MRI scan appeared to indicate that it was all gone, but I knew very well that the tissue around the crater that I had excavated in his brain had been infiltrated with microscopic cancer cells invisible to an MRI—cells that were already beginning the inexorable death march that no surgery could arrest. Although the tumor was nudged up against the part of the brain that moved his arm and leg, luckily it was nowhere near the language-processing part of his brain, so at this point his mind and his ability to speak were intact.

He was lying in bed, his pale, frail body covered by rumpled sheets. His hospital gown, open in back, was a far cry from his usual snappy attire. I surged into his room, upbeat and smiling, trying to lighten the moment while also conveying a slight sense of urgency.

I was hoping he might pick up on the fact that there were three other places I needed to be at that moment and forgive my haste. But as our eyes met, I saw that he was crying. No, more like bawling. I asked him what was wrong. He could hardly get the words out.

In a halting whisper he said, “I…don’t want…to end up on the street, selling pencils.” At that moment I suddenly saw him as he probably saw himself. He was facing his worst fears—the nightmares that woke him up in the middle of the night in a cold sweat and pushed him out of bed every morning with entrepreneurial urgency had become all too real.

Was this where it all ended? The rest of my patients could wait. My paperwork could wait. I sat down at the foot of his bed, a consoling hand resting gently on his leg and just listened, joining his chorus of tears with my own.

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Gray Matters: A Biography of Brain Surgery by Theodore H. Schwartz is available via Dutton.