From Patient to Poster Boy

This week I spoke at a conference at Riverview Medical Center in New Jersey on male cancers. The room was full of people who know far more about the biology than I do: oncologists, urologists, nurses, researchers. I’m a person who was diagnosed with cancer twice in 14 months, successfully treated and someone who lives with even more intention than before. That’s the credential I brought, and it’s the one that gets me invited.

I’ve thought a lot about why that credential works. I’m not there for the data, because the people in the room have the data. What I bring is the part of the experience that doesn’t show up in the literature. Nobody puts it in the brochure.

The brochure tells you what the procedure is and what the common side effects are. It doesn’t tell you what it’s like to read a test result on your phone before anyone has called you. It doesn’t tell you how long the quiet lasts between a scan and its results, or how that time feels in your body. It doesn’t say how a man in his fifties, who has spent his adult life being the one with answers, sits in a waiting room and doesn’t know where to put his hands.

A patient can tell you that. A well-meaning clinician probably can’t, because they likely haven’t been there in the same way. You learn what it’s like by going through it.

Men are especially lousy at this, and I include myself. We’re slow to see a doctor, quick to say we’re fine, and very good at changing the subject. Many of us would rather hear a statistic than say we’re afraid. That matters for male cancers in particular, because the screening that catches prostate and colorectal cancer early depends on men showing up before there’s a reason. Both of mine were found because someone looked. I’m not sure I would have gone looking on my own.

So what changes a man’s mind? In my experience it’s rarely a pamphlet. It’s another man saying that he went, that it was awkward, that the test took a few minutes, and that he’s glad he did it. A guy at the next desk, or at a race, or in a locker room. Lived experience works because it removes the mystery and the shame at once. If he did it and he’s fine, maybe I can.

I should be honest about the limits. One person’s story isn’t data. It’s one person’s story. Mine went the way it went, and yours might not. I try not to claim more than I know, and I try to say clearly that my experience is my own. The point of telling it isn’t to predict anyone’s outcome. It’s to make a hard thing a little less lonely and a little more concrete.

There’s also a cost to telling it, and I want to name that too. Talking about your own illness over and over takes something out of you. I choose what to share, and I don’t owe anyone every detail. People who share should be allowed to stop, and the rest of us should be careful not to treat someone’s story as public property.

But I keep coming back to the same conclusion. The most effective health communication I’ve seen isn’t polished. It’s a person standing up and saying plainly what happened to them. Clinicians know the science. Patients know what the science feels like. The best care happens when both are in the same room.

That’s why I keep saying yes to these invitations, even when it’s a little uncomfortable. Somebody in the back row - even if they happen to have a medical degree - is probably deciding whether to book an appointment, and he may need to hear it from someone who’s on the other side of the exam table.