Dealing With Cancer’s Uncertainty

I have follicular lymphoma, a form of blood cancer considered very treatable but chronic and incurable, and when it appeared originally, lymph nodes all through my body were inflamed, and larger than they should be, because the abnormal B-cells (a type of white cell, a part of the immune system) were clogging them and causing inflammation. So when lymph nodes are even slightly enlarged, with no apparent reason, such as an infection, it’s scary.

Six months ago, I had a regular check, and one small area in my groin showed enlarged lymph nodes; still in the normal range, but bigger than they had been on the previous scan. The physician’s assistant assured me that the lymph nodes were still well within the normal range, and that the radiologist who read the scan only noticed them because they were bigger than they had been on the previous scan. I try not to be pessimistic, but once bitten, twice shy; I mean, it is cancer, and blood cancers can be hard to get rid of — there’s no solid tumor to remove, and doctors can’t really remove every blood cell and bit of plasma in the body. They treat you, and hope they’ve caught all the cancerous cells. Because it scared me, even though the PA was very clear that she thought nothing was wrong, she offered to schedule my next appointment in six months, instead of the year it would otherwise have been, which I appreciated.

Last Monday, I went in for that six-month, regular screening CT scan. Now, a week later, I went to see my oncologist. This is a normal part of my life now, as much as I’d rather it not be; I like my oncologist, but the less often I need to see him, the better — seeing him more would mean that the cancer had come back. I had, as instructed, scheduled my oncology appointment a week after the scan, so that the scan would be back before my appointment. Having taken care to do this — even turning down an earlier appointment because it wasn’t a week after the scan — the results were, nonetheless, not available before my appointment.

Objectively, I know there are lots of reasons this can happen. The most obvious is that the radiology department got busy and hadn’t gotten to it yet, which, as it turns out, was the explanation. However, as the time for my appointment came nearer and no results appeared (my provider uses MyChart, which sends out results to patients via email as soon as they’re available), I began to get worried. What if the computer had somehow lost the results, and I needed a new scan? What if they had withheld the automated release because something was wrong? What if the follicular lymphoma, which has 1-2% relapse rate annually, had returned, and they wanted the oncologist to tell me, instead of figuring it out for myself from the scans?

It seems excessive, I know, but first, I have generalized anxiety disorder, so I’m anxious about things to begin with. Add that I have an incurable form of cancer; in middle age, that’s pretty anxiety-provoking alone, so add it to an existing issue with anxiety, along with research, perhaps a bit too much research, into relapsed and refractory (resistant to treatment) follicular lymphoma, and my anxiety went into overdrive, simply because I had no data to reassure me that everything was fine, mostly because I had no data at all.

I go to my appointment, in comes my oncologist, and still, no scan. He, unlike myself, is able to see the actual images, so he pulled them up and we started looking. He showed me the original scans, which, to put it mildly, lit up like a Christmas display, albeit in shades of gray for normal tissue, white for bone, and bright white for inflamed lymph nodes, and compared them to the new ones, where there was pretty much just areas of gray with some bones around it. But there was one area – the same area that had been noticed on the previous scan – that he was concerned about on the baseline scan; the scan with contrast, for some reason, wasn’t available in the computer, and of course, that’s the one that would allow a true comparison. He emailed the radiology department and asked them to rush reading the scan results, and told me that usually took 1-2 days.

I came home, stopping at the store for chips and candy, because that’s what I eat when I’m stressed (which is also why I don’t keep them in the house very often), and waited. One of my friends, thankfully, was off work today, and she stayed on the phone with me for well over an hour before she had to run errands, by which time I was at least calmer, if still eating chips and M&Ms.

Several hours after my appointment, the scan results came in: the areas noted previously had stayed the same (not shrunk, but at least not changed), except for one which had resolved (now normal, yay!), and everything else was that wonderful word “unremarkable”, which is medical-speak for normal. A note from my oncologist said “CT scan did not show any clear signs of lymphoma, which is good news”. All that anxiety for nothing, and yet “did not show any clear signs” — which I know means there was nothing remarkable there, and yet, does that mean it showed unclear signs of lymphoma?

My anxiety is a lot lower now, but it will never go away. This is something that a lot of people don’t understand – that I have no clear reason to worry, and yet, I’m still worried. There’s just so much uncertainty, because my increased risk will never go away completely. Still, my oncologist told me after treatment that he’d treated me so I could live my life – and anxiety or not, that’s what I plan to do!

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