How to Discuss Uncertainty: Cancer Edition

September 9th, 2018 by Potato

My dad has read Atul Gawande’s Being Mortal, which discusses the suffering that people can experience near the end of their lives — particularly the suffering of medical treatments to extend those lives. There was no question about having surgery to remove his tumour — the cost-benefit there was huge (esp. as it had sent him to emerg). But he explicitly did not want to go through adjuvant chemotherapy, because chemo sucks and he knows that first hand, and he didn’t think it would have much in the way of benefits.

Then we met with the oncologist and found out that the regimen he’d have now would be much less severe than the kind of chemo he had a decade ago, and that the benefits were very real.

But exactly how to convey those benefits is a tricky matter. She told us, roughly speaking, that 50% of people with his kind of cancer would still be alive and cancer-free 5 years out — the surgery alone totally cured them, and taking chemo would be a pain in the rear but not actually help them because they were cured already. 20% of people would have had their disease come back, but not with chemo, while 30% would see their disease come back regardless of chemo. So, a 20 percentage point increase in chances, chemo sounded pretty good.

But it’s hard to frame that in a way that sticks. After hitting the first wall in chemo side effects, “20%” didn’t sound that great any more. So my dad wanted me to explain it to him plainly: he was giving up 6 months of his life (or at least quality of life) to chemo. What was he giving it up for? “How much longer will I live?” And I get it: he wants the benefit expressed in the same units as the cost, which would make decision-making so much easier. But the cancer stats just don’t seem to be expressed that way.

And it’s complicated: it’s not as simple as giving up 6 months, as there are probabilities and uncertainties there, like permanent adverse events, versus the probability of having a recurrence and dying (or having a much harsher round of treatment), or the probability of being cured of cancer for the rest of his life but then having a heart attack or stroke. Even if he was cancer free in 5 or 10 or 15 years, how much longer would he live otherwise? And giving up a year at 69 when he could go golf or enjoy the cottage is perhaps not worth gaining a year at 79 where he might not be having as much fun. These are all hard things to say.

Later, I found a chart that looked basically like this that helped show the survival benefit:

A rough sketch of a survival curve for colorectal cancer patients with and without surgery, where the benefit of adjuvant chemotherapy is about a 20% increase in 5-year disease-free survival.

But even that is lacking, as when choosing whether or not to take chemo the percentage point increase may not be as important as the percentage increase. That is, if you’ve already got a 50% chance of survival, bumping that up to 70% is a 40% improvement in your situation — taking the chemo is better than the “20 percent” figure makes it sound.

So I made a pictograph, which I think may be a better framing for showing the benefit of chemo. The MSKCC nomogram has a similar display.

An infographic with happy faces to visualize the relative survival benefit of adjuvant chemotherapy vs surgery alone.

None of this really helps answer the question in the way my dad wants, with the benefit in the same units as the cost. I started to go down the road of maybe integrating under those survival curves, to try to quantify what the expected increase in lifespan was. I even went into some of the quality-adjusted life years research and found a set of results that I could use as a weighting function — after all, an extra month of good health at 69 is not quite the same as an extra month at 79 or 89. But I stopped because that’s guaranteed to be an exercise in false precision, and I’m not sure giving him what he wants there is the best way (and I’m also doubting myself because no one that I’ve seen in health science presents results in this way to patients — at most such things are used in health economics to talk about big picture costs and programs).

Decisions in Bad Times

September 8th, 2018 by Potato

Following my dad’s surgery for the big C, the standard of care is to give 12 cycles of chemotherapy to kill any cancerous cells that may be out there and help prevent the cancer from spreading or coming back. He had chemo just over a decade ago, and it is not a fun time, so he was a bit apprehensive at the notion before meeting the medical oncologist. But the oncologist laid out the plan and the stats and he said that it made sense and agreed to do it.

About a week after his first cycle the worst of the effects were hitting him hard, and he was done. No more chemo, no thank you. Making life miserable now for a chance at some extra years when you’re like, 80, is a bad deal and why would he have ever agreed to do it?

I went over the next day, made some soup, he started to feel better, and we went through some literature together. He agreed that a declaration that chemo was over may have been hasty, and went back for his second cycle yesterday.

That chemo causes nausea surprises no one. This was a known trade-off going in, but once he was actually experiencing these highly unpleasant side effects he was ready to quit.

You don’t want to be rewriting your plan while your head is in the toilet. On top of just feeling awful, there may be some chemo brain that makes it extra hard to make a good long-term decision.

But even beyond chemo, that’s a generalizable lesson. We’ve seen it often enough in investing: the midst of a market crash is not the time to re-evaluate your risk tolerance — you were aware that there were risks to investing and accepted those risks when deciding on your asset allocation in the first place.

The story also underscores the need to write things down. And not just the result of the plan: we didn’t need to write down that he’d be going to chemo every other week for 12 weeks, we needed to write down how he came to that decision. That there would be nausea, and that it would be temporary, and it would be worth it because the survival stats said so. Because it’s while he’s feeling that moment of doubt and urge to quit that he needs to be reminded of why he’s putting himself through this.

Day 7

July 8th, 2018 by Potato

Day 7. The wild calories continue to call at me. Their taunts and siren songs pick up at sunset. So far I have not been tempted out to the wilderness to investigate…

It’s been a week of actually doing the stuff I’ve known all along I should have been doing, and things are going well. I’ve run a calorie deficit every day. I’ve lost over a pound in a week — an amount that took 3 months in my “let’s just fart about with trying to eat a bit more sensibly and be a bit more active.” None of this should be much of a surprise (except the surprise that I’ve actually been good for a whole week).

I’m not physically hungry at all, so far it’s a fairly achievable calorie deficit. I’m taking a bit of a cue from the intermittent fasting ideas, with late breakfasts (~10-11am) and no snacking after 10pm, which I think helps, as I’m used to the idea of missing breakfast in a crazy morning rush. Psychologically I’m craving all the things. Like, I just want to transmute my stress into nothingness via the catalysis of chocoloate, even though that is a reversible reaction, with some nasty by-products. I’ve been whining, and likely will continue until I get to the point where eating healthy is more natural, and where I don’t want to eat a box of cookies just to prove that I can complete some kind of task.

The deeper question is how did I get here, and how would I get here on purpose faster in the future? Whether it’s losing weight, starting to budget, or starting some uncomfortable project, how can you get to the point where you actually just buckle down and do it? I don’t recall a particular epiphany — hitting my never weight should have taken me right to this point, but instead it took another year and a half to actually take it seriously and use all the tools at my disposal. My dad getting sick did re-surface the idea of mortality, but then why July 1st and not June 1st?

It’s an important question, because while I expect I’ll be good next week, and hope I’ll be good the week after, and the week after that, ad nauseum, I know there will come a time where I will slack off or fail. And when that happens, how will I dust myself off and get myself back here again? How, when I’m not sure how I finally stumbled in in the first place? For that matter, I’m not even quite sure what it is that I stumbled upon: willpower? Wisdom? The incubation time for a good idea to finally take root?

Anyway, had a decent week health-wise. There have been other decent weeks, but this one felt a little more on purpose, what with the tracking and not eating all the timbits when work got busy. Not quite sure how I managed it or how to do it again.

Never Weight – Q2-18 Update

July 3rd, 2018 by Potato

The last update featured some ups and downs and a near miss. This quarter was more of the same: a few good weeks, a few weeks of kummerspeck. Lots of walking: I hit my step goal ~5 days out of 7 on average, and there were only 3 weeks in the quarter where I didn’t hit it at least 4 days. But, curling season is over and I didn’t do much other exercise (other than the brief period of teaching Blueberry to ride her bike). At one point I was down over 2 lbs from the previous weigh-in, at another I was up over 3. But the see-saw did end down on the quarter end, by just a hair over a pound.

Taking three months to lose a pound doesn’t seem right to celebrate, because that’s almost down in the noise, and way slower than my target. But I did cross down through a threshold, which is good! The directionality is correct! And it felt hard, even if the results aren’t impressive. So it means the price of the course is going to go up! The next stop on the way back up to $299 (as my weight comes down to my target) is $229.

To really challenge myself I should probably make the thresholds a moving target, but right now I’m going to take the small victory and think about insanity mode for 2019.

I know that tracking what I eat will help, and I haven’t been doing it. So I started today. Right now I’m trying the function built into the fitbit app, but might just use a small paper journal in the end. Either way, I know that how I do it will be less important than that I do it at all.

The quarter also marks the start of the 20th anniversary year of BbtP. The day the site went live way, way back then is an ill-defined day near the end of the year, lost to the sands of time, so we’ll arbitrarily align with the winter solstice. Of course, celebrations are premature. I’ve wanted to update the design, etc. (maybe enable https?), and thought this would be the natural time for an update (maybe even a complete “rebranding”) but just don’t have the time/energy for it. And given that my posting frequency is way down, with more meta/health update posts, to an outside observer all signs must be indicating that the blog is in terminal decline, so perhaps we should open up the ideas for anniversary celebrations to a long-overdue euthanasia.

The Big C

June 18th, 2018 by Potato

Yeah, I’ve been silent a while. Long story short, my dad got sick and I had to take him to the hospital. That was two and a half weeks ago. Turns out the root cause of the problem that sent him there was cancer, which is always a scary thing to hear. But it’s looking like it’s operable (or in my dad’s words, “good cancer”), and this is his third go-round with the Emperor of All Maladies, so he’s taking it in stride (or at least with a brave face). He’s got his RBCs back up and is on his feet again, so despite a rough week in the hospital and now a surgery to look forward to, things are actually getting back to normal.

Of course, I had to wait until that point before saying anything to make sure most of my relatives and my parents’ friends were able to find out from them directly, rather than reading about it on the blog.

As for me, I don’t recall eating particularly poorly, but stress eating is a thing I suck at. I was doing mostly ok on the weightloss front up until this, but unless I turn things around in the next two weeks for quarter-end weigh-in, I’m likely going to end up higher than last check-in.

Anyway, father’s day was great. Blueberry and I watched almost 3 hours of the Magic Schoolbus (or she watched while I snoozed, because I definitely didn’t go into that with a plan for 3 hours of “screen time”), she played with garbage and claimed it was “the best day ever!”, I got 4 loads of laundry done, and she gave me cupcakes. I’m not really selling it here, but I really, really like being a daddy, and it’s a good time to stop and reflect on that.