The diagnosis came before the doctor called

I was at a stoplight on Route 110 on the morning of April 1, 2023, when my phone buzzed with a test result from NYU Langone. I quickly logged into MyChart and scrolled through pages of medical jargon until I got to the punchline: “clinically significant prostate cancer likely.”

Frozen, I stared at the screen, cars beeping behind me, and searched for a mistake, a mix-up, anything other than that terrifying verdict.

The results didn’t come entirely out of the blue. It started with a slightly elevated PSA test on a routine physical. To rule out prostate cancer, my doctor sent me for a sonogram and an MRI that delivered the news that made April Fool’s Day feel like a bad joke.

I spent the next two weeks Googling every phrase in my medical record and interrogating my friends with medical degrees. Eventually I sat face-to-face with an oncologist, who walked me through the findings and sent me for a biopsy to confirm the diagnosis and stage of cancer.

Once again, I saw the life-changing results before the doctor did and spent three frantic days crafting a list of questions before we discussed a treatment plan.

I got my second cancer diagnosis just 14 months later the old-fashioned way. No push notifications. No phone. No portal. This time it was a routine colonoscopy, a doctor with a pained look, and a conversation in the recovery room once the anesthesia faded enough for the words to land. He told me he’d found a mass, almost certainly malignant, though the complete diagnosis — Stage 3B colorectal cancer — wouldn’t come until the pathology report arrived days later. Somehow that should have been easier to hear than a screen full of clinical shorthand. It wasn’t. I didn’t even know what to ask or where to begin.

The lightning-fast delivery of lab results, covering everything from cholesterol checks to high-stakes biopsies, has launched a debate: Should patients get life-changing diagnoses from an app ding or a doctor?

A June survey of more than 2,400 cancer patients found that most still prefer to hear a diagnosis from their doctor, not a portal. But the same federal regulations that guarantee immediate access to test results, clinical notes and medication lists mean more people are getting the worst news of their life when they are alone — in their cars, at home, at work, at the mall.

If this is the new reality, we need to address the anxiety and depression that can accompany a serious diagnosis; my own pathology report came with a suicide-hotline number attached. Clinical records are written for clinicians, not patients, and a little context — especially around abnormal findings — would do more to ease anxiety than unreadable scans ever will.

Sending patients links to vetted health information alongside pathology results could counter the misinformation that dominates online searches. A 24/7 hotline staffed by clinicians — or even just a live chat — would help patients get real-time support. And translating records into multiple languages and formats matters more in a population that’s increasingly diverse.

The federal government defines health literacy as “the degree to which individuals have the capacity to obtain, process, and understand basic health information needed to make appropriate health decisions.” By that measure, nearly 90% of U.S. adults still struggle with mastering it.

That number is bound to improve as more consumers get a firsthand look at their records and test results. Yes, some will be shocked. But they’ll also call their care providers, show up to appointments, ask sharper questions and research treatment options alongside their doctors instead of waiting to find out what comes next.

This guest essay reflects the views of Jeffrey L. Reynolds, the president/CEO of the Garden City-based Family and Children’s Association.