My Feeling of Scanxiety But Without the Scan

In a couple of weeks, I will go in for my regular six-month check-up with my oncologist. It will be my first visit that isn’t preceded by a scan of some sort. During my diagnosis of follicular lymphoma, treatment and the first year after treatment, that meant a PET scan; since then, it has meant a CT scan.

Before I was diagnosed, I didn’t really understand the difference between such scans. Since then, my oncologist has told me that PET scans are better at showing metabolic activity (cancer cells are very metabolically active) and CT scans are better at showing structural details. After I’d been in remission for a year, he switched to CT scans because they use less radiation, and since there are baseline scans, they’ll show any enlarged lymph nodes (a key sign in follicular lymphoma).

I’ll still get blood work done a few days before, so the results will be available to my oncologist in time for my visit. He’ll still do a physical exam. I know, having passed the two-year mark for remission (I was formally declared to be in remission in December 2020), that the risk of recurrence dropped significantly at that time, that the risk of recurrence is lower now, and drops the longer remission lasts. However, the risk of lymphoma never gets as low as it would be for someone who’d never had it; the form I have is considered chronic and incurable, if very treatable.

Even so, I’m not sure how I feel about not having a scan. There was a suspicious-looking lymph node on the scan done this time last year, so instead of waiting a year, another one was done six months ago. The rough scan data showed that same spot, but the scan with contrast showed that there was nothing there. I know that’s a good thing… but it was still a suspicious spot on the scan. The radiologist was backed up and the scan wasn’t read until after I saw my oncologist. He saw that same suspicious spot and didn’t know it was the same one until he checked the previous scan, which was not particularly reassuring.

Then, too, like a lot of people with blood cancer, I was diagnosed at a late stage, which increases the risk of relapse. Many forms of blood cancer have no symptoms until they reach stage 4, which is what happened to me; my oncologist’s best estimate is that it had been developing for five to 10 years before I had the symptoms that led to my diagnosis. People who are diagnosed earlier are often diagnosed by mistake; they have an illness or injury that leads to a scan or X-ray, which unexpectedly finds enlarged lymph nodes. Knowing that it had likely been developing that long scares me.What if it comes back and, in the time between scans, no one notices?

As I remain in remission longer, the scans will gradually get further and further apart, and I know that’s a good thing, and yet… and yet. There’s no blood test that will actually diagnose cancer, although there are some being developed, and with the exception of one blood factor, my blood work was normal when I was diagnosed, and that one blood factor relates to cell breakdown; it could just as easily indicate a healing injury or an infection. So while good blood work is a positive indicator, it doesn’t really rule out a relapse.

So there it is. It’s a good thing — I know that cognitively. But emotionally, it scares me to not have a scan, even if no one but me thinks I should have one.

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