Tuesday, January 01, 2008

An Unwanted Journey: Day 0767 - NED Revisited

I've been accused of being too "logical", too "rational" at times. The criticism goes something like this.

"You know, there's more to life than thinking. Life is also about emotions, faith, hope and belief."

True enough, but what sets us apart from other animals is our frontal cortex, that part of the brain that is used for reflection, planning, and yes, logic. As part of a very long evolutionary process, humanity bears biological markers of every stage of evolution including the reptilian and mammalian brains. So other ways of being human include aspects of those brains as well as what makes us distinctively human.

It is unwise to neglect any aspect of ourselves, but I think it a far worse crime to neglect that which help us cope with the complexities of modern life, including cancer. Unfortunately, I'm discovering that a lot of what we call logic or forethought or rationality is largely the narrative patterns we apply to life after the fact. In other words, we rationalize life and our experience with 20-20 hindsight. But we are generally pathetic at predictions. So when I hear predictions, my antenna are raised automatically.

What does this have to do with cancer? The acronym NED is often heard by cancer survivors - No Evidence of Disease, appropriately capitalized because it is a phrase which we all want to hear every time a set of medical tests has been performed. But if you rearrange that acronym to END, you get Evidence of No Disease.

Is there any difference? You bet there is. Now I have to say that not a single one of my oncologists has ever said to me that test results provide evidence of no disease, just no evidence of disease. But being what we are, and not always writing things down and analyzing them logically, it is very easy to get confused. It is even easier for friends and family to get confused.

My experience has been that most people jump to the conclusion that having negative results in tests designed to detect recurrence of cancer means I have received evidence that there is no cancer present. But that is definitely not the case. There are no tests or instruments available to oncologists that can scan every single cell in the body for evidence of cancer. So we scan the site of surgery or take biopsy samples and analyze those.

The best news we can get is that limited sampling results in no evidence of disease. But that merely means that at this time and this place, the oncologists found nothing significant. It's a good indicator, to be sure, but it's predictive value isn't as great as some people think (or rather the conclusion to which they jump).

This is where being rational and logical is useful. It is helpful to sit back and think about how a simple rearrangement of words impacts one's life so dramatically. True, having NED isn't nearly as satisfying as having END, but such is what living with the possibility of recurrence is all about.

If that makes me too rational, too logical, to right-brained for some people, well then so be it. I can celebrate no evidence of disease, but that doesn't mean I have some kind of guarantee. And the next time I hear someone make the "round-trip fallacy", I'll be sure to correct them in regards to prognosis for cancer survivors. I don't think that's petty, I just think it helps me and other cancer survivors preserve our sanity.

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