I run numbers. I do this almost constantly. Maybe it’s symptomatic of being a patient of what is commonly referred to as one of the ‘least survivable cancers’- when the numbers are so stark it’s almost impossible not to think about it.
I know that no individual is an average, and our own statistics are based on a sample of one. Or, I know that’s the more positive way of looking at it. I’ve been told by many not to look at the statistics. I find this almost laughable. It’s just such an easy thing to say when it’s not you.
So, maybe it’s unhealthy, or maybe it’s not. It is what happens in my head, so I shall share it with you. I run numbers. Here’s how they go…
Fewer than 200 people in their forties, of the 4 million of us in the UK, are diagnosed with pancreatic adenocarcinoma each year. So, my chances of receiving this diagnosis were about 0.005%. I look at this number and wonder if I should play the lottery. There’s significantly more chance of winning that than having had this.
Of the c10,000 diagnoses in the UK each year, just 7% (or 700 people) are still alive five years later, and just 100 a decade on. On paper, this means I have 1% chance of seeing my daughter’s 18th birthday. These are horrific stats to be faced with. But, then I run the numbers…
The majority of pancreatic adenocarcinoma patients are diagnosed between the age of 74 to 89. As the average life expectancy in the UK is 81, their chances of being in the 10 year survivor group is already much reduced. I was 41 when diagnosed… I figure this ups my chances of seeing a decade quite considerably!
50% of pancreatic adenocarcinoma patients die within 12 weeks of diagnosis. This is staggering and horrific. The problem is that symptoms often only show when the tumour is large, and its position within a superhighway of critical vascular structures mean that it can be silent until it’s simply too late. As I write this, I am 10 months on from diagnosis, so I’ve already passed this horrendous statistic.
The only chance of long term survival with this diagnosis is surgery. The procedure is called a Whipple and it’s considered one of the most complex surgeries in medicine.
Only 1 in 10 patients are operable. That means that 90% will surely die from their disease. I am one of those lucky few. I was operable. My operation went well. My surgeon managed to remove my tumour with clean margins. I had no post operative complications. I take each of these as a statistical tick in the box on increasing my chances of being in the 1%.
80% of those that have the operation see a recurrence within two years. If this happens, you are considered palliative. Once it has recurred, it will continue to do so. You can play whack-a-mole where it pops up, but it’s not a game you’ll ultimately win.
This is where I am now. To my knowledge, I am cancer free. But, the fear of recurrence is real, and daily.
Survival rates have remained broadly unchanged for forty years. But, there has been a recent development. The chemotherapy regime has been changed.
I am one of the first sets of patients to receive Folfirnox. This was previously only used to try to shrink a tumour to make it operable, with pretty good results. It is now used as adjunctive (or, ‘mop up’) chemo to help prevent recurrence. I can’t run these numbers, because they don’t exist. How do we know what the 10 year survival rate is for those now receiving this stronger regime when it’s only been done for a year? So, I put this in my positive tick box.
I know that facing these sorts of statistics is numbing. It’s almost unfathomable. I know that many try to simply ignore them. I can’t do that. I run the numbers… for me it’s a comfort.
At the very least I have a 20% chance of my cancer not recurring within two years. That’s 4000 times greater than the chances of getting the damn disease in the first place. Even on the worst interpretation, I am 200 times more likely to see my daughter turn 18 than I was to get this diagnosis. And, that doesn’t allow for my age, my fitness, or the stronger chemotherapy.
These are the numbers I run. It works for me.
Statistics based on figures from Cancer Research UK.
This is my personal experience, shared to give a perspective on living with cancer.