Writing in the Washington Post, Jeff Henigson reflects on his improbable survival from the aggressive, often fatal brain cancer he was diagnosed with as a teenager—and the email he got some 35 years later from a retired neuropathologist that made him question the "medical miracle" of his continued survival.

Infographic: Envisioning the future of cancer care

Henigson receives an email

Henigson writes that he was originally diagnosed with anaplastic astrocytoma, a rare and aggressive form of brain cancer, in 1986, when he was just 15 years old. Patients with the cancer have an average life expectancy of about two or three years—but Henigson survived, and some 35 years later, BBC published a story reflecting on his improbable story of recovery.

Upcoming webinar: 2021 Oncology State of the Union

The story sparked an influx of messages from readers, most of which "were congratulatory," Henigson writes—except for one, from Karl Schwarz, a retired neuropathologist in New Jersey whose work focused on anaplastic astrocytomas.

In the email, Schwarz said that in his 38-year career, he'd only seen 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 urged Henigson to give him a call to discuss his own diagnosis.

During that phone call, Schwarz told Henigson about a lawsuit in which Schwarz had been hired as an expert for a plaintiff arguing that her brother had been misdiagnosed with cancer. The man had been told he wouldn't live more than a year and a half, but he ultimately survived for four more years—despite treatments that permanently damaged his brain—and the case spurred questions about the original diagnosis.

"'I share this story because your survival of anaplastic astrocytoma is so unusual, so uncommon, that the diagnosis itself begs to be revisited,'" Schwarz told Henigson.

Henigson makes a startling discovery

Prompted by the phone call, Henigson writes that he started to examine his own medical files from over the years.

He was shocked to discover that one of the files—titled "Surgical Pathology," dated Aug. 9, 1986—diagnosed Henigson with "'pilocytic astrocytoma (spongioblastoma),' a benign tumor," he writes. And another report, filed the following day, offered "essentially the same diagnosis" with a minor change.

Then, however, he came upon a third report, dated a week later, which cited a consultation with a neuropathologist from "a top-notch university," Henigson writes. In that report, he received a different, far more upsetting diagnosis: "'Highly anaplastic, high grade astrocytoma.'"

Henigson writes he called Schwarz and read him the first report, to which Schwarz responded, "'Your diagnosis—pilocytic astrocytoma—is a benign tumor. Why did you undergo radiation and chemotherapy?'" He echoed those sentiments when Henigson shared the second report, saying that report was "'the same thing. A benign tumor. The doctor has merely added a categorization for the tumor type. It is still nothing cancerous.'"

Then, Henigson writes he read the third report to Schwarz. "'This is the completely false diagnosis,'" Schwarz replied. "'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.'"

Henigson writes he "felt the urge to scream" and briefly muted his phone, but "tears came instead."

In response to Henigson's clear distress, Schwarz said his "'story is important'" no matter the outcome. "If you survived anaplastic astrocytoma, then you are the outcome of a miracle of biblical proportion," Schwarz explained. "'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.'"

Schwarz offered to write up a formal, written review of the pathology reports, which Henigson accepted. In the review, Schwarz wrote he couldn't explain the third report. "'It is a completely incongruous non sequitur to everything that had transpired before,'" he wrote.

Trying to move forward

Henigson writes he looked into whether he had grounds for legal action but learned the time limit on medical malpractice suits in California, where his diagnosis had taken place, had passed more than 30 years ago. Moreover, according to Henigson, his tissue slides from his diagnosis likely didn't exist anymore.

Ultimately, Henigson writes that while he agrees with Schwarz's opinion that "the cancer diagnosis was wrong," he disagrees with his claim that "'cancer has never been part of [Henigson's] story." As Henigson explains, the consequences of what he believes to be a misdiagnosis are severe: damaged vision, hearing, and hormones from brain radiation; decreased lung function from chemotherapy; and scar tissue on his brain that likely led to him being epileptic.

Moreover, the "diagnosis wreaked havoc on each member of my nuclear family, harming them, hurting them, for many years," Henigson writes. "There was so much to be angry about. So much to grieve."

But over the "past few days," Henigson writes, he's felt another emotion. "For 35 years I was afraid my tumor would come back—that the cancer would kill me," he writes. "It's seeping into me now, for the first time, that the cancer likely never was. In this, I find a modicum of relief. I do hope that will grow" (Henigson, Washington Post, 3/26).