21-month scan: lymph limbo

Trusting my gut (literally and figuratively)

It’s probably nothing, but it could be something.

We went into my 21-month scans on Monday feeling as secure and optimistic as we ever have. Our pulmonary embolism adventure the week prior included a CT scan which confirmed my PE diagnosis while also showing a clear liver.

I was feeling so confident that I wasn’t even too bothered when Per took a look at the scan results in the portal and seemed stressed. I breezed through the report looking for danger: metastases, activity in the liver. Seeing none, I relaxed; so much so that I was caught well off guard by my oncologist’s concern when we met with her.

Per and I have a varying recollection of what she said after mentioning the lighting up of the lymph nodes: he thinks she was talking about 8 vs 12 cycles of chemo, I thought she was referencing how soon I should return for a scan. But we both snapped into focus the moment he asked, “Wait, you think it’s cancer?”

“Well, yes, I think it very well could be,” she replied gently in her lilting Irish accent.

No.

Whether it was instinct or denial, I felt a mental wall go down.

The activity was in my lymph nodes, not in the liver where my previous recurrences had always been. I had been feeling better since starting on blood thinners. And what brought me to urgent care the day prior to my ER visit was GI issues that had persisted for more than 4 days; during which I had felt too sick to eat. 

I had asked twice if maybe I shouldn’t do a stool sample to confirm a bacterial infection but let the medical staff dissuade me: what good would that do, they reasoned. I wasn’t bleeding, nor did I have a fever—so even if they were able to confirm a diagnosis, they wouldn’t treat it. I couldn’t really argue with their logic (and honestly, who really wants to do a stool sample they aren’t forced to do?), so I reluctantly dropped it in spite of the nagging feeling that it might be a good idea.

“Has my CEA come back yet?” I asked.

No, not yet; and we agreed that as a previously reliable indicator, we would wait for those results before making any conclusions. She also wanted to see the CT scans from the week prior and compare them against the PET and MRI they had completed; and speak with my surgeon for his perspective and to discuss the possibility of a biopsy.

A plan formed: depending on the CEA and the surgical consult, I’d either come back to rescan in 8 weeks or schedule an immediate biopsy to determine if this was a recurrence. At some point during the discussion it dawned on me: neither of these paths offered what I was ultimately hoping to receive: the “all clear” which would grant me a sense of certainty for a few weeks until uncertainty crept back in.

I skipped scan day Raoul's but not the glass of sparkling rose

This is what I reminded myself the following day, as the hours ticked by, awaiting my doctor’s call. By then, my CEA had come back, and it was stable: we breathed a sigh of relief. We had also Googled our way into the knowledge that activity in iliac lymph nodes was so rare in cases of colon cancer that somebody wrote a paper about the single patient in whom it had manifested.

I checked my dominant emotional state: not scared, but frustrated; an assessment that got upgraded to “pissed” in the retelling of the whole experience to my therapist a few days later. I was frankly uncomfortable with my anger, having fought against it in a quest for peace about my diagnosis and all it entailed. And I took some comfort in the fact that something inarguably scary wasn’t leaving me more unsettled than I felt.

My therapist helped me to see my anger as protective: How dare you try to tell me about my body? 

The implicit “you don’t know me” I felt over five years ago came back to me; and in this case, I reasoned it was actually true: this was only my third visit with this new oncologist, and she’s only ever seen me after clear scans. She hasn’t lived through my clinical history; she hasn’t been on the receiving end of my growing chemo reluctance, as recurrences chipped away at my confidence in its ability to have long-term impact on any micro disease; she’s not been watching the interaction of CEA and activity for years. She really does NOT know me; and as an MSK doctor and Dr. Kemeny’s protege, she’s also expected to be aggressive. I really cannot blame her for coming into the exam room swinging. Would I have wanted anything less?

In the end, though, I find myself coming back to my gut (both literally and figuratively) and its reliability. I realize I must hold two things as true:

1. Intuitively, I do not think this is a recurrence, and

2. I could be wrong.

Ultimately, she calls me back Tuesday afternoon after speaking with my surgeon. Like us, he points out that activity in this particular area would be a highly unusual path for cancer to take. He also notes it’s not an easy area to biopsy. They’ve agreed a rescan in 8 weeks makes sense; then we negotiate exact timing based on her travel and mine (and the best possible time for scanxiety to hit). I’ll return in 7 weeks, just prior to my birthday and our family trip to Norway.

Hopefully, on that visit I’ll get the gift of a few weeks of certainty; and until then I’ll just keep trying to trust my gut.