Why Your Lung Cancer Prognosis Is More Than Statistics

There is a (not so) funny story from the months immediately following my diagnosis nearly three years ago. It goes something like this: My wife* was chatting with a friend/relative on the phone, optimistically describing how I was about to begin chemotherapy for my Stage IV lung cancer. She is in a good mood, or as much of one as a person can be in while discussing such a topic.

After all, her husband (me, in this story) was about to receive the best available medicine. I was still relatively young, comparatively healthy, and I had fully embraced my treatment plan after substantial research.

The friend/relative was quiet on the other end of the phone for a long time as my wife detailed how we see the next few months unfolding. In short, she painted a positive picture of her husband's prognosis. After a pause, the friend/relative said, "But you've seen the statistics, right? You know he's probably going to die in a few months. You should be ready for that."

When statistics become more harmful than helpful

Okay, maybe that story isn't so funny. But it does highlight a key problem: statistics - designed as a tool to help us understand data - can sometimes be more damaging than they are useful. (Irony is a form of humor, after all, so I still consider it a funny story.)

Why are lung cancer statistics often misleading?

The real punchline to this story is that my wife had not looked at the statistics, was not even remotely aware of what they might "reveal" about my prognosis, because I had explicitly asked her not to. Fortunately, I had prepped her for this sort of response.

The the stats failed entirely to consider my personal situation. They were skewed at the outset to appear dire. Depending on what version of the stats one looked at, I had anywhere from a 2 to 4 percent chance of making it past 18 months, much less two or five years. (On the other hand, if I made it past five years, then I had pretty much a 98% chance of reaching ten.)

The core problem is this: survival rate statistics are faulty by design. They cannot reflect the cutting-edge advances in cancer treatments because it takes about ten years to aggregate five-year survival rate statistics.

What the numbers leave out about your individual prognosis

Additionally, the statistics are exceedingly broad, since they are based on stage and general type of cancer, but do not account for individual factors, nor advances in detection. (For that matter, they also do not account for car accidents, murder, alien abduction, or death by other diseases.)

Inside of those broad statistics, you have a large sample of people with other underlying health conditions, skewed to an older population (many who qualify as elderly), most of whom were probably diagnosed quite late in the progression of the disease. Even with the best of treatments, a significant number of those patients would probably die within a year or two, regardless of the medical approach or even their stage of cancer. Under no circumstance would I want to lump myself in with that demographic sample.

How do new treatments affect survival rates?

A lot can happen in ten years when it comes to the development of new cancer treatments. The last decade alone has seen a significant increase in available therapies, from targeted therapies that work on specific gene mutations to an array of new immunotherapies that help the body's own defenses identify and kill cancer cells from within.

What statistics can and cannot tell you about your future

So when another friend/relative was on the phone with my wife a few months later (after I had spoken with that person numerous times and my wife had just finished a report on how well I was responding to my chemotherapy), it was easy to shrug off the comment, "But he's dying and you should be prepared for that..." Because statistics never lie. But they also never tell the whole truth.

*For purposes of this story, my wife is a composite character who may or may not have been related to me at any given point in the narrative. Even so, it is a more accurate representation of our collective reality than the survival rate statistics available online.

We are extremely saddened to say that on October 21, 2018, Jeffrey Poehlmann passed away. Jeffrey’s advocacy efforts and writing continue to reach many. He will be deeply missed.