Self-Monitoring and Cancer Survivorship
chronic condition | social life & social media
After being diagnosed with terminal cancer, Ian started measuring even more of his lifestyle in the hope of surviving longer. In this talk, he shares how self-monitoring with a body composition monitor is a useful took for assessing cancer progress between doctor visits, potentially allowing lifestyle relationships with it to be explored.
InnerScan | Excel
However, survivors will live many years with it and they will live longer. That is the good news, that people are surviving longer with cancer, not just because of self-monitoring but the treatment are improving; so all of us are going to benefit.
So it may be of interest for you to know and me whether after you have been diagnosed with cancer are you getting better or not. But unless the doctors can’t tell you on a short-term basis, they will tell you if the lump is getting bigger or smaller or if the shadow is larger or smaller than three months, six months, or 12 years ago. But they cannot tell you if you’re better this week than you were last week or probably a month ago; they don’t have a monitoring system in place but you, as Quantified Self people probably want to know that.
Now you know that somethings are going to help you live longer, things like exercise and to not smoking and to really ease off on the booze, and to keep yourself trim and so on. And you will find on the web and lots of books that somethings are supposed to help you. a lot of it is contradictory, some of it may be true of some people but not of others. How do you know it’s going to help you personally? By self-monitoring that’s how, but what are you self-monitoring.
Okay, there are cancer markers, molecular cancer markers, but you can nor normally do these roughly every month or so and they cost 50 to £100 a time anyway, but still they’re useful. It takes a week for the information to get back, so it’s still not telling you fairly quickly whether you’re improving or not.
Of course what you would really like to know is are you getting better every week, hopefully every day; a hypochondriac’s dream.
Okay, really when I was told I had cancer that I hadn’t really got long left and I did what anyone of us would do I started to measure more and more things in a frantic way. Obviously in the hope of finding something which would enable me to live longer.
Of the many things I did I bought an extra weighing machine, one which showed various aspects of my body. A part from the weight it showed the muscle mass, the water, the fat percentage and it also showed that for each of the limbs, and I’ll come more to that because that’s important.
Now I was registering all this and I like to measure things. I like to write down numbers and I’ve got a spreadsheet and I put it all in. but I had my cancer markers as well. These were a measure of my cancer and clearly I’m only doing it every month or two.
Now what I did notice that amongst all the measurements I was doing a measure of difference as well, of the difference of the muscle mass of my legs, as with fat and so on. Why? I had no real reason at the time; I just liked to play with numbers. But as time went on I started to notice that the difference of fat in each leg seemed to mirror what was happening in terms with the cancer markers.
These are the graph on top, these are the cancer markers and underneath is the leg fat difference, and as you can see it roughly tracks. I suspected for a while that that was a surrogate cancer marker. I have another cancer marker there and it’s not so good a fit but it still shows so about parallels.
I then did a statistical analysis of the markers each month and the fat difference of the legs and other things for each of the marker time, and you can see there we have correlations that were fairly good at these levels from 0.8 to 0.7 of all the cancer markers. So that in my mind is confirmed that this is a good indicator of my cancerous in between taken each of the molecular markers at one point and the visits to the doctors which might be every three month, six months and so on.
Then I plotted the markers against the prediction which was based on my markers of the fat difference, and as you can see the top one it’s not a bad one. It’s seen to roughly go inline, infact it’s pretty good. And on the other cancer markers to although not quite so good.
Now I read a paper a few weeks ago, and this was a research team in Taiwan at the university. They had taken I think 10,000 cancer patients and measured as many things as they could of these, and they measured also the bone dimensions using a laser beam so they got it fairly accurately.
Of all the correlations they checked, the highest correlation was the ratio of the thigh to the waist; 0.6 or 0.7 – can’t remember but highly significant though.
What that did to me was give me extra confirmation that the body composition is effected by one’s cancer, which is when you think about it isn’t strange; infact it becomes obvious. Clearly your cancer must be affecting this and that must be reflected on how the body composition is. And if you can get that data out if you can you then have an indication if you’re getting better or not.
As you can see I might be getting worse in the top one and even in the bottom one, but at the moment I’m doing quite well.
So the take home message is by tracking yourself, you can get a handle on how you’re doing on a day-to-day basis if you want. And if you reflect on how your lifestyle is you maybe therefore to really relate just what you’re doing in your lifestyle to whether you’re improving or not and I think to a lot of people that’s pretty important.
Now it’s not a substitute for seeing your doctor because of having all of these other cancer markers, but my theory isn’t yet proven but there’s a lot of supported evidence and I also know think that out of balance-ness is probably a good marker of optimum health or I should say the lack of optimum health. So even otherwise healthy people might want to start to track this for you to get a handle on whether you’re improving your overall healthiness or not.
I think as you notice your own balance and if you’re right handed your right leg will be fatter than your left leg. So you shouldn’t be worried if that’s so that is normal. About 1.5% of fat, but if it starts to go the other way you might start to worry that maybe something isn’t really right for you and check it. Not proven yet, but if you start to monitor it you might get a handle of how your healthiness is going and give you an independent indicator of this important idea of healthiness.
Thank you very much indeed.