Message from the Chair, Professor Ian Davis

Welcome to this latest edition of “A little below the belt.”

2021 is an Olympic year! Strangely, it’s a number not divisible by 4; the host country, Japan, is in the grip of the worldwide COVID-19 pandemic; athletes will do the Games by a fly-in / fly-out model, assuming quarantine issues are solved; but hey, international sport is back! The Olympic Games always includes the old favourites: the athletics, the swimming, and more modern additions like sailing, but most Games also include something different as a demonstration sport. This year, being in Japan, it’s sumo wrestling as it was in 1964. I bet many people are like me: we will sit down to watch it, entirely ignorant of the sport, probably balancing a bowl of chips on a soonto-be-sumo waistline, and within 10 minutes we will be shouting at the television: “Hey, that was a kinjite! That wouldn’t know his azukari from his ebanzuke!” We’ll be armchair experts in no time. You know it’s true.

It’s funny how quickly we become experts in areas we really know nothing about. Sometimes it goes even further where people feel the need to put in their opinions and try to override a true expert, and that can be hilarious. It’s been called “correctile dysfunction” and here’s a great example from Twitter:

@gary4205: Maybe you should learn some actual

SCIENCE then, and stop listening to the criminals pushing the #GlobalWarming SCAM! @AstroKatie: I dunno, man, I already went and got a

PhD in astrophysics. Seems like more than that would be overkill at this point. It can also get dangerous, for example when Certain People promote unproven ideas like injecting highly poisonous bleach into your veins, and other people carry the story and give it weight equal to the recommendations made by people who really know what they’re doing. The media is often complicit in this and justifies it somehow by thinking that every side of a story must be given equal value, when this is clearly not true. The most recent examples have been the firestorm of publicity around the extremely rare complications associated with the AstraZeneca COVID-19 vaccine. Everybody has an opinion on this, and everybody suddenly seems to know everything about virology, vaccinology, RNA biology, haematology, public health, cold chain logistics, statistics, and probability theory. Never mind that some of the responses equate to, “This bridge is a little bit rickety. Clearly it’s much better if I swim the crocodile infested waters instead.” The risk to your life of crossing the road to get to the vaccine clinic is hundreds of times higher than the risk of the vaccine itself. For the record: I’ve had the AZ vaccine (twice), gladly and with profound gratitude, and fully aware of the tiny risks. My advice to everyone is to get whatever version of the vaccine you are offered, as soon as you get the chance.

It’s worth stopping to think, though. How many decisions do we make every day? How do we decide on the right course of action? Sometimes you can genuinely use your own experience: I know that road is always busy at this time of day and they’re doing roadworks this week; I’ll take the alternate route instead even though it’s longer and I’ll get there much sooner. The penalty for making the wrong decision because you are misinformed might be a bit of inconvenience.

We don’t have that luxury in health care. Get it wrong, and people die. Some viruses are not just “a little flu” or “one day – it’s like a miracle – it will disappear.” Sometimes our decisions have huge ramifications, and might affect people beyond just ourselves including those we love. Will I ignore that growing lump? A bit of blood in the urine – nah, must have been the beetroot. Wow, my testicle is getting bigger, that’s going to impress them on the beach. No, I must have just pulled a muscle working in the garden, the pain will go away. I’ve been diagnosed with a serious disease and now I have to choose between two options that both sound horrible for me. What if I get it wrong? What if I regret my decisions later? What am I going to do?

Sometimes it’s clear what has to be done, but very often in medicine there is no clear right answer, or maybe there are several answers that are all right in different ways but you still have to choose one. You take an aspirin for your headache, and you expect it to go away. It probably will, and you will think nothing further of it. You don’t take into account the science behind how it works, or the technology in producing it, or the fact that you might bleed to death or have a stroke because of that tablet (you almost certainly won’t! But you might...) You’ve already made a risk-benefit calculation, probably without even knowing it; or someone has made that calculation for you and you haven’t questioned it. There’s evidence that this will help you in this situation, and you’ve followed the evidence.

Unfortunately, it’s not always so clear cut, and cancer is a great example of that. Sometimes there just is no evidence to guide us, in which case we take advice from experts who draw on their experience and extrapolate from other situations. That is not evidence-based practice, it’s “eminence-based” practice, but at least it’s better than “effluence-based” practice, which is what you might get if you go on the internet and get unfiltered and unverified information.

What can we do about this? It’s pretty clear that we will be able to make better decisions if we are better informed, with reliable evidence that has been tested and shown to stand up. That is what organisations like ANZUP do. We work with people affected by below the belt cancers (cancers of the prostate, kidney, bladder, testicle, or penis). We recognise that people affected by these cancers need information to support the decisions they must make. Our job is to provide that information where we can, but ANZUP goes further: we try to generate the evidence where it does not exist.

That means coming up with new ideas, and testing them properly in well-designed clinical trials. Our hope is that the outcomes of those trials will help us move the whole field ahead, by informing health policy, changing practice, and generating new research questions. The end result of all this is that we want to improve outcomes for people affected by these cancers.

We have examples where we’ve been able to do this quite effectively. ANZUP led a large international clinical trial in prostate cancer, which has changed the way that disease is managed in many parts of the world, including Australia. We have proven that another novel treatment for prostate cancer was superior to the previous standard of care. We are testing new approaches in bladder cancer and testicular cancer, and are hoping to have similar trials in penile cancer soon. We have also shown that some ideas that seemed really good and sensible actually did not work and should not be used. “Negative” results like that are also very important information: did you know that outcomes for people with COVID-19 treated with hydroxychloroquine are actually worse, when the studies are done carefully? This accumulation of evidence doesn’t happen by accident or in isolation. It takes careful planning, a great deal of energy from a lot of people, considerable money, and (to everyone’s annoyance) lots and lots of time. One of the reasons why some people are suspicious of COVID-19 vaccines is that they came to market so quickly, and it’s true that this was extremely unusual: vaccines usually take years before they become available. The global catastrophe meant that it had to be accelerated, and resources were put into it to make it happen, but of course the longest follow-up we have right now for anyone injected with a COVID-19 vaccine cannot be more than a year so how can we be confident of long-term safety? Still, the benefits were clear (actually, they were quite extraordinary), they are very very safe, the technologies are not new so we can extrapolate to some extent from what we knew before, and of course they need to be rolled out as soon as possible.

Wouldn’t it be great if we could get safe and effective new cancer treatments out to the people who need it like we have with COVID-19 vaccines? Well, we can’t do that just yet, but that doesn’t mean we stop trying. You might be reading this magazine because you’ve been personally affected by a below the belt cancer, or you know someone who has, or perhaps you’re just curious. You will find inside these pages a truly amazing group of people doing truly amazing work that is already making a difference. We are constantly aware of the needs of people affected by these cancers, because we work with them, care for them, live with them, and some of us are them. We know the science, because we have spent years preparing for these moments. We know what needs to be done and we are working hard to make it happen.

How can you help? You already have. You’re thinking about below the belt cancers, which are often forgotten or overlooked or tucked away out of sight and Below the Belt. You’re thinking about how important and valuable it is to have the necessary evidence to guide decision making and improve outcomes. You’re perhaps thinking about clinical trials in a new light, understanding why they are necessary and how hard they are to do. Perhaps you’re in a position where you might participate in a clinical trial. Perhaps you’re in a position where you might donate to support our research. Perhaps you can help us make other people aware of the importance of all these things. Whatever it is: you’re here, we thank you, and we hope what you find in these pages not only answers some questions for you but stimulates new ones as well. If that turns out to be the case, it actually means you’re one of us at heart.

Please enjoy this edition of “A little below the belt.”

IAN DAVIS

Chair, ANZUP