The Long Week Between a CT Scan and My Oncologist Visit

Every person who has ever had cancer gets checked periodically; how often those checks occur depends on the type of cancer, how well the person responded to treatment, how long it’s been since the last treatment, and a whole host of other factors that vary significantly by person, and also by what the person’s oncologist recommends, and often, what the person’s insurance will pay for.

For me, five years after being declared NED (No Evidence of Disease - the medical term for remission) following treatment for follicular lymphoma, a form of blood cancer considered highly treatable but chronic and incurable, that means blood work every 6 months and a CT scan every year, plus a meeting with my oncologist to discuss the results.

My most recent CT scan was earlier this week; my appointment with my oncologist is next week. Normally, due to a backlog, it takes at least a week for the radiologist to read a CT scan; that’s why my appointment with my oncologist is eight days after my scan. There was even one appointment where the CT scan hadn’t been read by the radiologist before I got to my appointment. That didn’t happen this year; apparently, they’ve cleared the backlog, and my CT results were available online within a few hours of my scan. The radiologist said this:

1. “Slightly increased RLQ cluster of a few prominent mesenteric nodes, nonspecific. The 1st PET CT in 2020 demonstrated diffuse mesenteric metastatic adenopathy therefore this could represent developing recurrence in mesenteric nodes.
2. No other potential recurrent lymphoma.”

Not being a medical person, I had to go look that up. It turns out that “slightly increased RLQ cluster” is primarily indicative of an infection - which would fit; for the last several weeks I’ve felt just slightly off, although it never quite developed into a full illness, and home testing came up negative for COVID, flu A and B, and RSV. Still, it’s the season for respiratory illnesses, and I really didn’t think much about it… until I got these results, with a week to wait before my oncologist explains what he thinks.

It’s that second sentence that’s really concerning me, “could represent developing recurrence”, translated out of medical lingo, means the cancer might be back. Or it might not. I checked the results of my blood work against what it looked like when I was diagnosed, and everything is normal, even the tests that were outside the normal range five years ago. So there’s that, but at the same time, I’d had blood tests done for various reasons before diagnosis that never came up abnormal, and my oncologist thinks the lymphoma was developing for five to ten years before it became symptomatic. That makes the normal values on the blood tests less reassuring than they otherwise might be.

This is the downside of electronic records and test results that are provided to the patient as soon as they’re uploaded to a computer. When the results are good, they’re incredibly reassuring. When they’re bad, it’s upsetting, but at least the results are clear. But this… I already have a history of issues with anxiety; this is driving my anxiety sky high.

Some people have suggested I email my oncologist, and I’m thinking about it, but I’d rather discuss it in person than by email. As with many doctors - especially those in large systems, as mine is - I don’t have a phone number that would let me reach him directly, and I know, from experience, that if I call the oncology department, they’ll take a message and I’ll most likely get an email in return anyway. I have no symptoms, just an anomalous test result - one that might be, or might not be. Even the radiologist said “could”, not “does”.

Whatever I do, it’s going to be a long week.

This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.

For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.