Waiting for Scan Results After Follicular Lymphoma: Relief, Uncertainty and Life After Cancer

Early last week, I went in for a CT scan, to see if the enlarged lymph nodes seen on a scan in January had remained enlarged, or grown, or shrank. The scan is the easy part; the hard part was waiting for the results to show up, because there’s no way to know how backed up the radiologist is. It’s hard not to assume that any change in how long it takes results to appear (my insurer uses MyChart, so test results appear as soon as they’re posted) means something is wrong.

Waiting for Follow-Up Scan Results Is Never Easy

I have follicular lymphoma, a form of blood cancer that’s considered very treatable, but chronic and incurable, although the risk of recurrence drops after the first two years following treatment. It’s been six years since I finished treatment, but "drops" and "returns to pre-cancer levels" are not the same thing; the risk of recurrence will always be higher than the original risk of developing cancer, and it’s a stress that never goes completely away.

The CT scan that was done in January was the first one to show any concerns at all, so I’ve been concerned since then that it was back, knowing that I’d chosen to wait and see, rather than attempting a biopsy (complicated by location; the enlarged nodes are buried in my intestines) or undergoing prophylactic immunotherapy, which would drop my overall immune functioning. It’s so easy to second-guess decisions like that, and while six months doesn’t seem like a long time, it is when under circumstances like these.

Living With the Fear of Follicular Lymphoma Recurrence

These are the thoughts that went through my mind while I waited for my results, which have shown up as quickly as several hours after the scan, and as slowly as after I saw my oncologist 10 days post-scan and he emailed the radiologist (after reading the scan himself, so at least I got the information). One day passed, then two, then several… finally, after a week, the night before my appointment with my oncologist, the results showed up—and while I appreciated finally receiving them, I wasn’t really expecting them at 8:30 on a Sunday evening.

When a CT Scan Raises More Questions Than Answers

Then there were the results themselves, which showed that the radiologist looked at my file enough to know what the scan was looking for, but not any more deeply than that. He noted what I was being monitored for, then that the lymph nodes had shrunk marginally (lymph nodes should be about 5 millimeters, or half a centimeter; the concerning two were both around 15 millimeters, and each shrunk by 1-2 millimeters in each direction), while ascribing the change to a treatment response. But I haven’t had any treatment, so that confused me. There was also a lot of information about other body systems that I haven’t seen in such reports before, which was interesting, sometimes reassuring and sometimes not, but none of which was relevant to whether or not the cancer had recurred.

Inflammation or Cancer? Understanding Enlarged Lymph Nodes

I had decided, over time, that if the scan results weren’t completely clear, I would ask for the immunotherapy I had previously rejected. Despite showing some signs of improvement, the scan wasn’t completely clear, but it’s my oncologist’s opinion that the remaining enlargement is due to inflammation. It’s not, apparently, unusual for inflammation to occur in that area, given the amount of bacteria and viral particles in the intestines; the job of lymph nodes is to respond to germs by first killing them and then removing them, which causes inflammation.

Relief Doesn't Always Silence the Fear

I should be relieved, and in many ways I am, but I’m also somewhat at a loss. I had geared my thinking up to asking for treatment, and it’s unnecessary—but that’s if my oncologist is correct and the inflammation is caused by infection and not a recurrence. So mixed in with my relief is an underlying fear that in the year between now and the next scan those nodes will grow because the cancer is back, and it won’t be noticed, as well as a large portion of, "Now what do I do?"

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