One of the first things I wanted to understand after being diagnosed with metastatic cancer was my prognosis.  Quite simply, I wanted to know how long the median person with a similar diagnosis had to live.  In cancer there are no absolutes, but I wanted to have a realistic, data driven assessment of how long I had to put my affairs in order.  I also wanted to know what I could do to beat the odds and prolong my life, because I had dreams of outliving whatever the data showed.

No one has a crystal ball on how long any of us will live.  But for each of the past 40 years, roughly 40,000 men and women have died of metastatic breast cancer, and that is an awful lot of data to ponder.  So I turned to the huge database, called SEER (Surveillance, Epidemiology, and End Results) , that the National Cancer Institute has maintained since Nixon first declared war on cancer in 1971.  

Engineers love to analyze data, so I could hardly contain my relative joy when I found a tab that was labeled "expected survival life tables."  In my head, I was downloading raw data, breaking it out by decade, determining the rate of improvement in survival after diagnosis, and for good measure subdividing the data for the particular type of breast cancer I had.  

Sick as it sounds, I felt like a kid in a candy store, with visions of R dancing in my head.  (For the 99.9% of you who are not geeks, R is a statistical software language that if both free and useful for analyzing data)

My plan was simple - get the survival data, manipulate it to reflect the current trends, and then devise an elegant plan to survive past the median and onto the tail end of the curve.  I'd read and re-read Steffen J Gould's great essay on how to interpret cancer survival stats and knew that if I could just make it to the median survival, my chances of continuing to live were much greater.

Nervously, I clicked on that tab.  And I experienced my first minor disappointment.  To get to the raw data, I needed a signed research data agreement, and that agreement would take two days.  Determined to use the intervening time wisely, I spent some time learning more about the raw data that I would soon be accessing.

And I learned something horrifying.

People like me aren't counted.  

The SEER database only tracks the date when people are first diagnosed with cancer, their initial treatment and when they die.  The one critical data column that includes the date when the cancer was found to be metastatic, is missing.  

For anyone who has had early stage cancer, data from that missing column would mean a lot.  It would mean that we could know with pretty good accuracy what the chances are of our cancer coming back once we were treated.  For those of us with metastatic disease, it would mean that we could have better data to understand how much time we might have to live after the cancer had spread.  And more importantly, it would mean that we would know how many people are living with metastatic disease in the United States.

One of the first things I learned about science is that you can not improve what you can not measure.  Yet many of the big charities in cancer are investing directly and lobbying for federal investment in research to reduce the incidence of metastases.  

That's right, a significant amount of research dollars are being spent on improving something that can't be measured.  

It the current administration's moonshot to cure cancer has any chance of succeeding, it needs to start by making sure it can measure what it is trying to improve.  Metastatic disease needs to be counted.

Today's post has hopefully raised awareness of an extremely important issue for anyone impacted by metastatic cancer.  But awareness without action won't change the future for the next generation.  Subsequent blog posts will outline specific actions we can all take to help fix this relatively simple problem.   

Because no metastatic cancer patient should feel discounted, dismissed and disregarded because they aren't counted.