When the Scan Is Over but the Waiting Begins: Living With Lymphoma Scanxiety

This morning, I went to the imaging center to get a CT scan, a six-month follow-up for my last scan, which was anomalous; it showed a possible recurrence of follicular lymphoma, a blood cancer considered very treatable, but chronic and incurable. It’s hard to know if the previous scan, which showed two enlarged lymph nodes, was a recurrence or not.

The radiologist who read the scan noted that the enlarged lymph nodes were in the area where the original lymphoma arose - but I was diagnosed at stage 4, which means it was spread throughout my body (“lit up like a Christmas tree” was the description of the diagnostic PET scan the nurse gave), so I don’t know why the radiologist said that; no one really knows where it first developed. My oncologist had a more reserved response, writing “No clear signs of lymphoma, which is good” in my file.

I’ve been waiting six months since that scan to find out more. I’m hoping it’s gone away on its own; after all, the immune system is supposed to find weird things in the body and destroy them, and it’s possible that it was an infection. Lymph nodes are supposed to swell when fighting an infection, or when clearing out any other type of invading or unrecognized cells, so it could just be my immune system working the way it’s supposed to.

Why Waiting for CT Scan Results Feels So Difficult

Several of my friends offered to go with me to the CT scan, but it’s not the scan that causes the anxiety; it’s waiting for the results that’s truly nerve-wracking. It’s common at my facility to schedule the appointment with your oncologist a week after the scan, so there’s time for the radiologist to read the scan before the appointment; they were so backed up at one point that the radiologist hadn’t read it before my appointment, so my oncologist had to do it during the appointment.

For the last scan - which wasn’t expected to find anything, but did - the results arrived within a couple of hours of the scan, because of course they did; it’s been five or six hours since I left the facility, and I don’t have results yet, which isn’t unusual, but is making me nervous and jumpy, even knowing it could be days before I get any information.

When Small Delays Add to Cancer Scan Anxiety

Adding to my stress was a minor problem with the scanner itself, which the scan tech assured me wasn’t related to its primary function, but meant that my appointment was delayed because an electrician was checking to see why the machine (or the table patients lay on, which moves up and down, I’m not quite clear on that account) was making a clicking noise during operation. So that’s adding to my anxiety; what if the machine didn’t scan correctly and I have to get another scan?

The scan tech can see the results as they appear, rather the way a mammography tech can see if the scan is clear or not, but the tech can’t read the scan; both types of scans are read by the radiologist, who reads them in the order they were taken, unless something urgent, something requiring immediate treatment, is suspected; she would have seen if the scan wasn’t clear, and we talked about a sticker on the scanner telling people not to look at a particular part of the machine during scanning because it uses a laser, and that sometimes people look at it, then follow it with their eyes, so the scan isn’t clear and she has to redo it. That makes me believe that if the scan wasn’t clear, she’d have told me, and redone it right then. But what I know doesn’t make me any less nervous that something might have gone wrong.

Living With Scanxiety and the Uncertainty of Lymphoma

So now I’m waiting on the radiologist, knowing it could be today, tomorrow, or even after my appointment with my oncologist next week. I’ve already received one email telling me I have new test results available, but it was for some of the bloodwork that was also being done for my upcoming appointment. It’s going to be a long week.

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