Cancer 2

Before I joined the population of fellow cancer travellers, I had the same simple linear understanding of the “process” that most people do.

You get diagnosed, you get treatment, it works or it doesn’t.

What I didn’t appreciate (and this will vary from cancer to cancer, but my experience is with colorectal) is how little certainty there is, and how wide the grey areas are.

Like, in my previous post, I said I was “diagnosed” with cancer. Which maybe made you think I have it. But that’s not how it works. I had a colonoscopy, and a large polyp was removed, and that polyp was cancerous, and a very small part of it could not be excised. So it’s still in me.

Do I have cancer? Maybe! I have a probability of having live cancer cells in me that is significantly higher than zero. But not as high as one.

How bad is what I have? This is also a game of probabilty. Modern technology can shave off the edges of the distribution, but it can’t quite nail it down.

A computed tomography (CT) scan didn’t show any other tumors in my body, so that means I probably don’t have “stage 4” (modulo the resolution of the scan), which is mostly incurable (though it can be manageable), where the cancer has managed to spread outside the colon.

An MRI didn’t show any swollen lymph nodes, which means I maybe do not have “stage 3”, which requires chemotherapy, because the cancer has partially escaped the colon. But MRI results are better at proving rather than disproving nodal involvement and people report having surgical results that run counter to the MRI all the time.

That leaves me (theoretically) at “stage 2”, looking at a surgical “cure” that involves removing the majority of my rectum and a bunch of lymph nodes. At that point (after the major life-altering surgery!) the excised bits are sent to a pathologist, and the probability tree narrows a little more. Either the pathologist finds cancer in the nodes (MRI was wrong), and I am “upstaged” to stage 3 and sent to chemotherapy, or she doesn’t and I remain a stage 2 and move to a program of monitoring.

In an exciting third possibility, the pathologist finds no cancer in the lymph nodes or the rectum, which means I will have had major life-altering surgery to remove… nothing dangerous. My surgeon says I should find this a happy result (no cancer!) which is probably because he’s seen so many unhappy results, but it’s a major surgery with life-long side effects and I would do almost anything to not have to have it.

Amazingly, despite our modern technology there’s just no way to know for sure if there are still live cancer cells in me short of taking the affected bits out and doing the pathology. Or waiting to see if something grows back, which is to flirt with a much worse prognosis.

Monitoring will be regular blood tests, annual scans and colonoscopies for several years, as the probability of recurrence slowly and asymptotically moves toward (but never quite arrives at) zero. And all those tests and procedures have their own error rates and blind spots.

There are no certainties. All the measuring and cutting and chemicals, and I will still have not driven the cancer entirely out, it will stubbornly remain as a probability, a non-zero ghost haunting me every year of the rest of my hopefully long life.

And of course worth mentioning, I am getting the snack-sized, easy-mode version of this experience! People in stage three or stage four face a probability tree with a lot more “and then you probably die in a few years” branches, and the same continuous reevaluation of that tree, with each new procedure and scan, each new discovery of progression or remission.

Talk to you again soon, inshalla.