No More PET Scans

There's a specific sentence I didn't know I was waiting to hear until my oncologist actually said it: "We don't need to scan you anymore."

I'd braced for a lot of sentences that year. That one wasn't on the list. I'd been so focused on getting to no evidence of disease that I hadn't thought much past it — hadn't considered there'd be a second finish line hiding behind the first one, quieter, but in some ways just as significant.

Scans had become the whole shape of my calendar

For the better part of a year, my sense of time didn't run in months. It ran in scans. Everything got measured against the next one — how many weeks until, how I'd feel in the days before, how long I'd have to wait for the results after. Scanxiety had become such a fixture of my life that I'd stopped noticing it as a distinct feeling and started experiencing it as just the background hum of being alive. You don't realize how loud a hum is until somebody turns it off.

So when my oncologist told me the surveillance scans were done — that my case didn't call for the ongoing PET monitoring some patients need, that my scans had been clean enough, for long enough, that we'd moved past the window where that level of watching mattered — I didn't fully process it as good news at first. I processed it as a change in a routine I'd built my whole nervous system around, and change, even good change, takes a minute to land.

What that decision actually meant

I asked her to explain it in plain terms, because I've learned by now that I need the actual clinical reasoning, not just the comforting summary. She walked me through it: the relapse risk for Hodgkin lymphoma drops sharply the further out you get from treatment with clean results, and beyond a certain point, the risks of repeated PET scans — the radiation exposure, the cumulative cost, the fact that scans can't tell the difference between cancer and ordinary inflammation and so sometimes chase false alarms that cost more in fear than they return in information — start to outweigh what they catch. Past that point, she told me, they trust symptoms and bloodwork to do the watching instead.

I sat with that for a while after the appointment. It wasn't just permission to stop being scanned. It was a statement about how sure they were. Doctors don't stop watching for a threat they still think is likely. They stop watching when the data has convinced them, again and again, that the threat isn't coming back the way it once might have. Her confidence in that decision became a kind of proof I could stand on, even on the days my own confidence wavered.

Grief I didn't expect

Here's the part nobody warned me about: alongside the relief, there was a strange, small grief. The scans had been terrifying, yes. They'd also been the thing standing between me and simply having to trust my body without supervision. As long as I was being scanned, I didn't have to fully believe I was okay — the machine was doing that believing for me, checking in on a schedule so I didn't have to carry the whole weight of faith myself.

Losing the scans meant I had to start trusting on my own terms. No more quarterly proof. Just my own attention to my body, my own willingness to notice something's wrong if something ever is, and otherwise, just living, unmonitored, the way healthy people get to live without thinking twice about it. That's a gift. It's also, unexpectedly, its own kind of vulnerable.

Learning to live in an open loop

In software, you build systems with monitoring because you don't want to find out something broke by hearing from an angry customer — you want the system to tell you first, quietly, before anyone else notices. Scans had been my monitoring. Losing them meant trading a closed, supervised loop for an open one, where I'm just trusting the system — my body — to hold, without a dashboard proving it in real time.

I won't pretend that's easy. Some weeks I still catch myself missing the certainty, even knowing the certainty came at the cost of near-constant fear. But I'm learning, slowly, that this is what moving forward actually asks of you. Not the absence of uncertainty. The willingness to live inside it anyway, trusting the people who know more than you do, trusting the body that carried you through the worst year of your life and came out the other side still, somehow, yours.

Where I am now

No more scans on the calendar. No more counting weeks toward the next one. Just an ordinary life, unfolding in ordinary time again, the way it used to before any of this started. I didn't know how much I'd missed that shape of time until I finally got it back.

💜 Kayla