I have been working in cancer screening for seven months now, and I have had the opportunity to reflect on what that means for me, as a cancer patient myself.
I thought I took on this job because I am interested in women’s health, and I was looking for a new challenge, and I admired the team I was joining. I didn’t consciously think about my own personal experience of cancer, but realistically it probably did motivate me. I have been involved in patient advocacy in a few small ways since my own diagnosis, and had applied for a couple of positions that were related to that, but I did not think this was particularly relevant for my job with CervicalCheck. For a start, my cancer is colorectal not cervical, and besides it is unrelated to screening as I was diagnosed at an age that is outside of the screening parameters. I just had “unlucky” cancer, not “preventable” cancer. But of course all cancer is unlucky, and not fully preventable.
In Ireland, we have structured screening programmes for three types of cancer; breast, bowel and cervix. Why these three? Why not any or all of the other types of cancer? Shouldn’t we be doing our best to prevent everyone from ever getting any cancer? The answer comes from a proper understanding of the principles of screening, those seven criteria made famous by Wilson and Jungner that every medical student learns (and forgets immediately, if they are anything like me). Basically, the test should be acceptable and make a difference to the outcome for most people (but not all), and the benefits should justify the costs. Carrying out screening can turn a “person” into a “case”, and there are significant responsibilities associated with that. Why would someone who feels perfectly well subject themselves to a medical test? Why would you go out of your way to be poked or prodded or procedured? Particularly when the screening test involves intimate bits of you like your breasts, vagina and poo?
Doctors like screening because it helps them to find cancers at an earlier stage, when it can be chopped out without too much fuss, and they can use their favourite word – “cured”!
People like screening because it makes them feel safe, and responsible, and protected. We are understandably terrified of the idea of serious illness, especially cancer, so we choose to do things that will stop it from happening to us. Or, at least, that’s what we think we are doing. We can get bored quite easily by the old chestnuts of healthy eating and exercise and no smoking and no drinking and no craic and no crack and no bacon and no radon and blah blah blah fingers in the ears. It is much more proactive and scientific to get a proper doctory test done with forms and signatures and result letters and all sorts of officialness which tells us, in carefully crafted language, that we are All Clear. Sorted! Let the crack-soaked bacon cocktails roll!!
It is quite a shock, then, to discover that the fancy official test and fancy official result are not bullet-proof guarantees that you won’t get cancer. And you get cancer anyway. That cancer, the one you got tested for. That very bloody cancer. How lousy is that? What’s the effing point so?
The point is that, although you were unlucky and got the cancer, some other people who did the test didn’t get cancer. Or they did, and it was found and treated quickly, and now they are better. You didn’t do anything wrong. They didn’t do anything right. It just happened that way. Because that's how screening works. If more people do the screening test, the number of people who don’t get nasty cancer will go up. The number of people who DO get it won’t necessarily go down, but the percentage of them will. Statistics is a head-melt. The screening test isn’t really for you, it’s for everyone. That is also a head-melt.
So am I happier that I got a cancer that no one was looking for? Should I be cross that I wasn’t being checked for it? Would it help me to be cross? Would I be more cross if I had been checked for it, and they didn’t find it? How cross would I be if they had offered to check for it, and I didn’t get around to having the test, and then I got it? Another head-melt.
I am lucky. I got an unbelievably unlucky cancer, and I lucked my way out of it. I am grateful. I am not angry. I don’t feel let down.
That said, I don’t think about it too much. And I’ll take any screening test going, just in case.
