Message from the Chair, Professor Ian Davis

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

2020, eh? Isn’t it ironic that last year we had 2020 vision but we never saw it coming? We never considered how our lives would be turned upside down. We never thought we would be blocked from international or interstate or even inter-family travel. We never dreamed of feeling anxiety on seeing an unmasked face coming within a certain distance of us. We never imagined the possibility of breathing air that might kill us or the people we loved. Many of us had never even used Zoom; I read recently that Zoom shares were worth more than the top five international airlines combined. Wouldn’t it be lovely if we knew the future clearly?

Or would it? Leaving aside strategies for winning lotto draws or betting on horse races, would it be helpful to know? Steven Wright is an American comedian known for his deadpan delivery of one-liners and short jokes. Here’s one:

My girlfriend’s so intense... She woke me up the other night and asked, “If you could tell exactly when and how you were going to die, would you want to know?” I said, “Heck no, why?” “Doesn’t matter, just go back to sleep...”

I often tell that to my patients who ask me how long they have to live (although you do have to pick your audience carefully!) It’s a fair question, and one that media and movies have primed everyone to think they must ask, but of course I don’t know the answer, and even if I did, I’m actually not sure that’s the question people are really asking. I think more often people might be trying to say other things, like: “I’m scared. I don’t know what’s going to happen to me. I don’t know how to navigate the system. You’re talking about frightening things like operations or chemotherapy. I don’t know how to make decisions about this. I’m not even sure what questions I should ask. Of course I’m going to die sometime but I’d like it to be as far away from now as possible. Actually now I’m not even sure about that – maybe quality of life is more important than how long I’ve got. Surely we can do both. By the way, is there a God, and where can I send complaints?”

The problem is uncertainty. Cancer is what I do, and I’ve been immersed in it for over 30 years, but for this person coming to see me it might be the very first time they’ve even thought about it, let alone had to make decisions about it. Life doesn’t get much more black and white than when you are faced with decisions you don’t know how to make, but that could have profound effects on your life and the lives of those around you. We need people to give advice, and we need confidence that the advice we are getting is sound and reliable.

There’s a thing called “evidence-based medicine.” Health professionals like to think that wherever possible the care we give is based on evidence showing that it works, and that it is better in some way than the alternatives. Often evidence does exist to guide us, but humans and the diseases that affect them are very complex, and not every situation has been studied and researched carefully. Sometimes we rely on the opinions of experienced people, who know the evidence and can extrapolate from it to give reasonable advice in this situation. That “eminence-based medicine” is not quite as good but sometimes it’s all we have. And right down the list is the information you get from your neighbour down the street whose niece had cancer 20 years ago, or a random page that pops up on Google: some might call that “effluence-based medicine,” and I probably should stop at that point.

The whole field of medicine is improving but it is almost never by big leaps or the “breakthroughs” you hear about in the media all the time. Most of those “breakthroughs” come to nothing, or are about someone killing cancer in a test tube (pretty easy, you could stomp on it) or in a mouse (also pretty easy, and they never ask me about Google). Look for the

giveaway line: “We are hopeful this might be a treatment for We want the best treatments to be available for everyone, and this disease in five years.” That means it hasn’t been tested yet, while these cancers are out there affecting people’s lives then we and the people who have the disease now clearly can’t benefit know that there is always room for more improvement. from it, and the people who might benefit from it if it ever happens probably haven’t even got the disease yet, so who exactly are they trying to pump up? The truth is that a big leap ahead happened perhaps five or six times in the last hundred years: things like the discovery of chemotherapy, or new classes of drugs, or how the immune system can be harnessed to fight cancer. Those big jumps are rare, so when you hear the B word mentioned, beware anything that comes after it…! ANZUP is also dedicated to training the next generation of health professionals and researchers. We do this through our scientific meetings, our Concept Development Workshops, our symposia and preceptorship courses, by providing research grants and fellowships, and by the generous and selfless sharing of knowledge and experience by so many of our members. We have around 1800 members at the time I am writing this, representing a diverse mix of disciplines and expertise from The only way we make progress is by careful research. That means across Australia, New Zealand, and internationally. And although learning about what you are dealing with (both the disease, we are relatively young, having formed only in 2008, ANZUP and the person affected by it); understanding what treatment trials have already had impact on how some of these cancers are approaches might be available, and what is coming up; testing managed in Australia and around the world. the new ideas to see if they are safe, and then whether they actually work, and if so how often and at what cost in terms of side effects or other issues, and then finally looking to see how the new approach stacks up to what you have been doing before. Sometimes the new approach clearly works better, or is easier, or less toxic, or costs less, or has some other advantage. The new approach then becomes the new standard that the next new idea has to beat. Sometimes you test the new idea and find that the older way is actually still the best. In that case: keep doing what you were doing, and back to the drawing board. We are making progress, but it’s hard, painstaking work, that often takes a long time – literally lifetimes, in many cases. It’s also expensive, and we need to get funding for every trial that we want and need to do. We do that by applying for grants (hard, timeconsuming, low chance of success even for really strong ideas), or by working with industry (they often have their own agendas, or are limited in what they can provide or what we can accept), or through fundraising (and we all experience “donor fatigue” even for the very best of causes). Clinical trials are the only reason I can tell you with any confidence what I think the best approach for That’s research. That’s how clinical trials work. That’s why it’s so important. Clinical trials are the only reason I can tell you with any confidence what I think the best approach for you might be. And every time I do, I’m conscious once again of just how many gaps there are in our knowledge, and where the evidence does not exist. We need to do better. How can you help? You already have. You’ve read this far, and hopefully you will read the rest of this extraordinary publication and become even more aware of who we are, what we do, why we do it, why these diseases need to be talked about, and why clinical trials are so important. We hope you will pass that on to other people so that we can continue to raise awareness. You might want to participate in some of our fundraising This is where ANZUP comes in. ANZUP is the Australian and New Zealand Urogenital you might be. initiatives, and you will find information about that here too. and Prostate Cancer Trials Group. That’s quite a mouthful, but what it means is that we are a group of And if you ever are affected by a health professionals, researchers, and community representatives, disease like cancer, we hope you might who have come together to try to improve outcomes for people ask your doctor a very simple question: “Is affected by “genitourinary” (“below the belt”) cancers: those there a clinical trial that might be suitable involving the prostate, kidney, penis, bladder, or testicles. You’re reading this magazine because you’re interested in these cancers, for me?” That simple question might open and perhaps been affected by them either directly or through opportunities for you, and will definitely help someone close to you. Either that or you’re really really bored, but others in the future to fight those diseases – we can fix that too. diseases that none of them ever saw coming. ANZUP works towards its goal by doing Back to Steven Wright, uncertainty, and 2020 as a metaphor clinical trials in these cancers to test better for life. No, don’t tell me. If the bus with my name on it is ways of helping people. These might be destined to come round the corner next Tuesday, I don’t really through new drugs or treatments, or better want to know today. I do know I want to make every moment until then as good as it can be. And that should be the case ways of using old approaches, or combining for all of us all the time. If I have learned anything from the different ways of treating cancer. It might also 2020 experience, it would be this: none of us, especially me, be about understanding how people deal with are very good at guessing the future; reality can be far weirder their cancer, or what information they need. than fiction; living in the moment can be very rewarding; and it’s really valuable when a clear pathway forward becomes Our scientists collect blood or tissue or other samples or data evident. And joy can still be found, even without certainty of to try to understand better why cancers behave as they do, the future: this time last year I did not know that 12 months and why some treatments work and others do not. We want to later I would be meeting my new grandson for the first time. know what the effects of the cancer or its treatment might be on the quality of someone’s life. We want to know how a new Please enjoy this edition of “A little below the belt.” approach might best fit into a health system that has constrained IAN DAVIS resources. Chair