Survival Rate Statistics and What They Don’t Tell You

The other day I was having a discussion and it came to light that statistics had been bandied about quite early in my post-diagnostic journey. Now, I’m no stranger to statistics, but odds are that, whether you realize it or not, most of you are. That is not to say you have never heard any quoted or identified yourselves among some figure cited here or there… The truth is, one way or another, we are all statistics. And that means, well, virtually nothing. Moreover, even if one out of ten of us understands that even if the median reader gave up two sentences ago and clicked off this page, some readers will actually read most or maybe even all of what I am typing up here, this understanding is still only a basic understanding of a type of statistical qualifier and hardly bridges the gap between acquaintance and friend.

Which is all just a very wordy way of saying that statistics should only be read when one is prepared to interpret them, and while interpreting them it is important to remember that they often cannot highlight a “truth” without refined analysis. Such is the case with the statistical survival rates of adenocarcinoma, my particular flavor of cancer.

By the time I had received my diagnosis, I had already combed through the Internet for information to prepare myself for what I perceived as an ever growing probability. It turned out to be a good thing for me, too, in that I was essentially relieved to be told that I had cancer, even if the terms “Stage 4,”  “metastatic” and “inoperable” were being used in conjunction with the diagnosis of adenocarcinoma. None of that sounded particularly good, but I still felt okay (even better than when I took that first X-ray that revealed my tumor a couple of months earlier) and my medical team seemed pretty upbeat about my potential options. But here’s the rub: I am something of a natural born skeptic and I believe strongly in scientific research and a scientific approach to understanding the world (as well as my place in it). This means that I was prepared, perhaps better than the mean individual in our society, to approach this situation from a pragmatic and positive position.

So I did not freak out when I saw that, statistically speaking, I only had a 1% chance of living past five years, and frankly only a 50% chance of getting through the next eight months. But statistics on survival rates tell an incomplete story. When the stats are examined, one thing becomes immediately clear: the figures are based on patients who were diagnosed over 10 or even 15 years ago. It takes a long time for those patients to become valid statistics, and certainly no less than five years if we are going to discuss five-year rates. A lot can happen in five years, a lot more in ten or fifteen. These were among the first thoughts traveling through my mind. Also of relevance: I am young and healthy and this condition often affects much older people who are not in the best of health (especially after a lifetime of smoking). So, if I’m going to put myself on either side of a bell curve, would I automatically go along with the geriatric chain smoker who had ignored all symptoms until he was coughing up blood or suffering from bone pain, or would I see myself on the opposite side of that curve, along with the few of us who were not diagnosed so late that the cancer had simply run its course?

I may have been in Stage 4 by definition, but I saw no reason to let the statistics set the tone for me. And I saw no reason to encourage anyone to look them up, either. In fact, the first thing I suggested to my friends  and family was that they ignore any statistics because, frankly, they were misleading, and grossly so.

In fact, the entire landscape of cancer treatment has altered significantly since the patients in those unfortunate statistics were initially diagnosed. The “traditional” therapies in use today are profoundly more effective, and the experimental drugs undergoing current clinical trials are more promising than ever. I am very much looking forward to the new immunotherapies that are emerging from trials and heading toward commercial availability. This bolsters dramatically how much the statistics do not apply to me, even beyond the lack of appropriate demographic breakdown in those numbers.

And I had not even read “The Median Isn’t the Message” by Stephen Jay Gould yet. It’s a great essay about not being swayed by statistics in spite of how dire they might appear. And it is also a testament to positively approaching a cancer diagnosis, which I highly recommend reading. Ironically, I just stumbled across it today while I was contemplating how odd it was that people I know and love had gone in exactly the opposite manner when they encountered the same numbers.

In the end, numbers are just numbers and statistics are just statistics. We are human beings and we define ourselves.

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