A Day at the PET Scan

I wanted to try to write more random stories about having cancer. Cancer sufferers are a bit of a secret society in my experience, and I feel like it should be more publicized and normalized, so maybe in the future it will be slightly less terrifying if it ever happens to someone. (Statistically, I think I read somewhere that around 40% of people will get a cancer diagnosis at some point in their life, so it’s nowhere near as rare as I previously thought.)

PET scans are scary to contemplate because they essentially light up wherever you have cancer “mets.” The silent worry being that the scan might reveal additional cancer in your body that you and the doctors didn’t know about before.

This is my second PET scan. My first one last June revealed that my lung cancer had spread beyond the lung and brain to a handful of small bone spots.. a couple of vertebrae and some in the hip area. But it didn’t show anything in, say, the liver or pancreas or any other vital organs. So it was a bummer about the bones, but it could have been a lot worse. Before that scan I had no idea how much cancer was actually in me, and the results felt like it would determine whether I had days, months, or years left to live.

The stakes are a lot lower today, but it’s still pretty stressful.

So here’s how it works, most of which I wrote on my phone while I was waiting.

I arrived at about 8 am. I was told not to eat anything before, but water was fine.

It was the second day after my chemo infusion, and I had woken up suddenly wide awake at 3 am, and couldn’t get back to sleep. Not unexpected because of the steroids I have to take the day before and after chemo day, which leave me pretty wired.

My stomach felt a little weird in those early AM hours so I took a Zofran just in case, which is an anti-nausea med that dissolves on the tongue for chemo side effects. It tastes awful but I’ve gotten used to it. I don’t usually have to take many anti-nausea meds in the days after chemo anymore, but if I feel anything the slightest bit off, I take something just to stay ahead of it. The meds don’t do much after you’re nauseous.

I don’t normally schedule anything in the days after chemo because of general fatigue, but this PET scan slipped through. So I was pretty tired both from lack of sleep and from chemo drugs rolling through my system.

I arrived at the PET scan site, which is a quiet out-of-the-way office in the midst of a large medical center. I’ve been there a few times before, so the “finding the right place for the first time before an appointment” anxiety wasn’t a factor. It took about 30 min to get there in morning rush hour traffic. I live on the wrong side of the city.

I checked in and waited in a small waiting room that might hold 3 people comfortably. This was the pre-waiting waiting room.

About 10-15 minutes later I was called into another waiting room, except this was more of a working waiting room to prepare for the scan.

A technician poked my finger to check my glucose. It was 108, slightly high, but well within limits for the scan. For some reason that’s important to know before scanning.

Then they installed an IV in my right arm (so routine for me now that I barely even think about it) and hooked me to a rolling cart the size of an office copier that looked like a Star Wars robot peddled by Jawas on Tatooine. It whirred for a few minutes as they injected me with the radioactive juice that lights up on the scan. No pain, no side effects.

Then a boring one hour wait while the juice went through my system (I assume–they never told me why the wait). During this time I wrote a lot of this post.

I had to make sure to pee to empty my bladder just before the scan. The toilet flusher scared the hell out of me because I barely touched it and it whooshed really loudly. Strange bathrooms are kind of terrifying, right?

Then a move to a different room for the PET scan itself. They ask you to remove everything from your pockets and take off anything that might interfere with the scan (a zippered hoodie, in my case). I dressed in unflattering stretch pants, slip-on shoes, and a t-shirt because I knew what to expect beforehand. This ain’t my first scanning rodeo.

The scan took about 15-20 mins and is a lot like a regular CT scan, which are fairly quick and easy (compared to an MRI at least).

The main activity of the PET scan is lying on a not-especially-comfortable bed that tracks back and forth through a big ring. For the PET scan, though, it did one or two passes and then it only moves the bed every minute and a half. During which the machine didn’t make any noise. All I heard was the air conditioning in the background. So it feels like they forgot about you until you’re startled when the bed shifts again. There was a pleasant chime at the end when it was done.

Incidentally, there’s always a soothing mosaic on the ceiling of a sky or stars or something to look at during these kinds of scans. I don’t know if that has any positive psychological effect on anyone else, but I just find it puzzling and often find looking at the patterns in the regular ceiling tiles more interesting. If they really want to entertain me, mount a television up there or something.

For me, unfortunately, lying flat on my back on essentially a flat board and holding still is torturous. My neck and shoulder muscles tense up and start screaming at me in 5 or 10 minutes, And For some reason my neck keeps wanting to twist to the right all the time, so I have to keep fighting that. And I have to keep reminding myself to breath. So it’s not especially relaxing, and it feels a lot longer than it is.

After the scan was done I collected all my stuff and left the PET scan room.

I asked for a copy of the scan on a disc, something I try to remember to do, just in case. I find them interesting to look at, though I have no idea how to tell a good gray splotch from a bad gray splotch. If nothing else I can pull images from it for blog posts.

It was about a 40 min wait in the tiny pre-waiting room while they burned the disc, during which I wrote more of this post and I wondered if they’d forgotten about me.

They did. I don’t think it’s common to ask for discs anymore. Maybe someday they’ll figure out USB sticks. On the second try it took about 10 mins.

After that I drove home and went back to work. Kind of. I was pretty exhausted from all the activity on day two after chemo so I took a little extra time to rest up first.

Then it’s just a wait for the results.

In my experience the doctors will only call quickly if they find something bad they need to take action on. If there’s nothing unexpected, they typically don’t call you, and just wait until the next regularly scheduled visit to discuss it.

I expected the test results to appear in the health portal page in a week or so. However, to my surprise, the results appeared on the portal the same day, so I can reveal the shocking truth about they found.

After this short commercial break.

Just kidding.

I’m not a doctor, but my reading of the results indicates that as of today there are no active sites of cancer activity. I read over it a few times to be sure, and even plugged it into ChatGPT to get a second opinion, because AI is our friend. It’s showing all the previously active sites from the first PET scan are now inactive, and there were no new sites found. In short, that’s pretty good news for me.

Still, to be realistic, my treatments are “palliative,” meaning that the disease had already progressed beyond the point where it’s “curable,” and they are just trying to manage the disease as best they can.

Still, I hate to be optimistic, because things could change at any time, but I think things are going about as well as they possibly could be for me because of what I can only assume is extraordinary luck. After about 9 months they’ve essentially halted the cancer progression at the point that it was discovered, and even reversed it a little bit (my lung tumor has shrunk since treatments began, and is no longer constricting any airways).

I continue to feel pretty good, and have no pain directly attributable to the cancer itself (with the possible exception of a little hip pain in the mornings that goes away on its own, but I think that’s more about my mattress than anything else). Anything negative I feel is from treatment side effects; little things like dry skin, congestion or a runny nose, and some minor GI issues now and then. My everyday life is mostly back to what it was a year ago before this all started.

So all in all, a pretty good day in the cancer journey for me.

Header image: Not a PET scanner, just a CT scanner, but it was all I could find in my photos. The PET scanner looks similar but slightly bigger.