A Survivor's Perspective of Scanxiety

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If you have scanxiety, you aren't alone.

image of Karen Cohn

In a recent conversation, a friend of mine was talking about her recent by-yearly scan to check for a recurrence of her lymphoma. Like most of us - certainly like everyone I’ve talked to - she was concerned that she might have relapsed, and concerned that, no matter how compassionate and empathetic her medical team is, they don’t really understand just how much scanxiety - worrying about the results of any diagnostic scan can be, no matter how often, and no matter how long those check-up scans have been clear.

Scanxiety is a real issue for cancer patients. Like many cancer patients, especially those who recently completed treatment, I get regular CT scans to check for signs that the cancer has returned. Like pretty much every cancer patient I’ve spoken to, I get very anxious as the time for the scan approaches. Not about the scan itself, but about what the scan might find - because it might find that the cancer is back; the risk of relapse is higher, for most people, shortly after treatment, when any cancer cells that escaped treatment have had time to multiply and the patient’s immune system, damaged by whatever treatment was received, hasn’t regenerated enough to fight it off.

I am coming up on three years NED (No Evidence of Disease, the “official” term for remission in blood cancers) next month; I have a CT scan in early January, six months after my last scan in July. My last scan was very, very slightly abnormal, with one lymph node in my groin being ever so slightly larger than the previous scan; my oncologist’s PA said that the only reason it was noticeable was that they had previous scans to compare it to, or they would never have noticed. She didn’t seem worried about it all, but she could see that it bothered me. The great thing is, she listened and she understood - and so, what should have been a one-year break between scans remained a six-month break instead, to reassure me.

I haven’t had any of the symptoms that led to my diagnosis - fatigue so great I would fall asleep in nearly any position but standing, sweats that occurred in my sleep (more often during afternoon naps than at night), sinus tachycardia (an abnormally high heart rate that was, apparently, a response to the inflammation caused by stage 4 lymphoma) and sudden, unexplained weight loss. To be honest, I rather miss that last one; being able to eat whatever I wanted, in whatever quantity I desired, was rather nice, at least for the month or two I had it, before I knew the cause.

Still, there’s that niggling thought that maybe, just maybe, that enlarged lymph node was an indication that the lymphoma was back and I’ve spent the last several months since that scan worrying. After all, I was at stage 4 at diagnosis and had likely been spreading for years; maybe a slight swelling was the first sign then, never seen because there was no reason to look for it. It’s extremely likely that it was a minor infection, or a response to the food poisoning I’d had around the time of the scan, but there’s still that small chance that it’s something else - lymphoma returning, or some other type of cancer triggered by treatment. It’s a worry I can’t quite ever turn off, no matter how objective I can be about the reasons why it’s probably not a relapse and it’s something most people who haven’t been through it really can’t understand.

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Dr. Lauren Pinter-Brown