Waiting for Results After My CLL Diagnosis

Karen Cohn is a retired middle school special education teacher who was diagnosed with follicular lymphoma in July 2020. Catch up on all of Karen's blogs here!

Waiting for test results is frustrating, annoying, exasperating, and… and… did I say frustrating already? Four and a half years ago, I was diagnosed with follicular lymphoma, a form of blood cancer that is considered treatable, but chronic and incurable. I finished treatment four years ago and am currently NED (no evidence of disease — remission to most people), but the chronic and incurable part means I have to see my oncologist regularly, which at this point is every six months. Every visit involves blood work, but the one in January involves a CT scan, which I had this morning, in preparation for my appointment with my oncologist next week.

Blood work is pretty routine; the results come back in a few hours, get posted to MyChart, and usually there are very few, if any, surprises. Despite being a blood cancer, follicular lymphoma rarely shows up in blood work. All of my blood work except one factor was normal before diagnosis, and that one could mean a lot of things, so it’s not particularly helpful if it changes. But a CT scan is how I was diagnosed, completely out of the blue; my doctor thought I had a blood clot in a lung (which also fit the symptoms), so she sent me for a CT scan; the diagnosis came back probable lymphoma, possible leukemia and I was floored. So waiting for results makes me nervous.

It doesn’t help that my medical facility — like so many others — is often backed up and doesn’t prioritize interpreting and posting what are (to them) routine tests. Last year at this time, they were so backed up that the results weren’t available on MyChart at the start of my appointment with my oncologist. I had visions of being told they’d withheld them because the cancer was back; they can’t (there are laws about releasing test results), but that’s where my mind went, because that’s what anxiety does.

So here I sit, waiting for my test results. I’ll get an email when they’re in, so I’m compulsively checking my email while I try to distract myself from compulsively checking my email. Objectively, I have no reason to be concerned–but then, my symptoms didn’t start until a month or two before diagnosis, and my oncologist thinks it was probably growing for five to 10 years before that, so objectivity is not particularly useful here. Subjectively, I am imagining all sorts of bad things coming out of this.

I understand that results aren’t instant. I understand that other people have their own anxiety and are probably worse off than I am. But that goes back to objectively versus subjectively - and subjectively, the stress is really, really high.

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