A Little Below the Belt - Issue 12 - December 2019 by ANZUP Cancer Trials Group

A little below the belt Conducting clinical trial research to improve outcomes for bladder, kidney, testicular, penile and prostate cancers

Making Connections AN ANZUP CANCER TRIALS GROUP PUBLICATION

ISSUE 12, DECEMBER 2019

TESTICULAR • PROSTATE • PENILE • BLADDER • KIDNEY

YOU VS.

CANCER DISCOVER THE LATEST IN CUTTING EDGE CLINICAL TRIALS AND RESEARCH HEAR FROM WORLD-RENOWNED BELOW THE BELT CANCER EXPERTS • Learn from personal experiences about treatment choices and decision making • Listen to valuable advice on the impact of treatments on sexuality and intimacy • Ask a question in the interactive Q&A session with the panel of clinical experts and patients

THE COMMUNITY ENGAGEMENT FORUM SUNDAY 19 JULY 2020 ADELAIDE CONVENTION CENTRE 1PM – 4PM

TESTICULAR • PROSTATE • PENILE • BLADDER • KIDNEY 2 A LITTLE BELOW THE BELT

BOOK YOUR FREE PLACE anzup@anzup.org.au

www.anzup.org.au

What is ANZUP? The Australian and New Zealand Urogenital and Prostate Cancer Trials Group was formed in 2008, bringing together a world-leading multidisciplinary team of doctors, nurses, other health care professionals, scientists, researchers, and community representatives, all working in areas related to urogenital cancer.

ANZUP has members in every state and territory in Australia and New Zealand, and international members too. Urogenital cancers are those coming from the testicles, prostate, kidney, penis or bladder.

New Zealand Registered Charity: CC51217

ANZUP’s work aims to improve the ways a patient with these cancers is treated. Our members and investigators are widely dispersed and busy, working in a range of disciplines. A trial idea only comes to fruition when we are able to provide opportunities for people to meet, work through the science, develop the trial concepts, and write and work through all the other documentation and processes. Then it is necessary to initiate, run, monitor and report the trial results. All of this relies on the volunteered time of our members and is separate from the other needs ANZUP has to source the much larger amounts of funding to support the trials themselves.

“Other types of research, like lab work, are very important, but ANZUP is different: we take that information and turn it into new treatments that we can test to see if they benefit our patients.” Professor Ian Davis, ANZUP Board Chair

ANZUP acknowledges the Traditional Owners of the lands on which our company is located and where we conduct our business. We pay our respects to ancestors and Elders, past and present. ANZUP is committed to honouring the First Peoples’ unique cultural and spiritual relationships to the land, waters and seas and their rich contribution to society.

The paper used in this edition is called Maine Recycled Digital – Silk. It is made with fibre derived only from sustainable sources and produced with a low reliance on energy from fossil fuels. The purchase of carbon offsets compensates for emissions produced over an international supply chain, from seedling through to final delivery to the customer. A LITTLE BELOW THE BELT 3

Welcome to issue 12 of A Little Below the Belt This magazine is written for patients, families, carers and supporters of those with testicular, penile, bladder, kidney and prostate cancers. The theme of this issue is ‘Making Connections’ which was is a continuation of the theme of our ABIGAIL AND CLAUDIA Annual Scientific Meeting this year – our annual gathering of ANZUP members, industry stakeholders and researchers all in the name of getting heads together in one place to make meaningful change (you can read more about this on page 14). But what does ‘Making Connections’ mean? Cancer trials are a foreign concept to some, but importance is not lost on many. Being diagnosed with cancer is devastating, can turn a life upside down and can have a lasting impact on a patient, their family, friends and community. ANZUP are working to improve that experience.

information to raise awareness, connecting patients to ground breaking trials, opening the opportunity for better treatment and outcomes, and, lastly, connecting people to each other. Our magazine is our way of connecting to you, our readers, through sharing the stories behind the research, trials, statistics and events, and shining a light on the people that drive change. ANZUP is strong believer in connecting people with each other. Our multidisciplinary and collaborative approach to clinical research is testament to this fact. After reading this issue of A Little Below the Belt, we hope you have greater insight into why this is so important to us. If you enjoy this issue, please continue the ‘Making Connections’ spirit and give your copy to a family, friend, colleague or someone else who may like to find out more about ANZUP. Happy reading! Feel free to drop us a line to share your thoughts, comments and questions via friends@anzup.org.au Abigail Gatling & Claudia Brooks, ANZUP Marketing & Communications

So, throughout this magazine you will read about the importance of making and keeping connections; connecting consumers to

The 2020 Below the Belt Pedalthon, Sydney. More information on page 52

ANZUP Cancer Trials Group Limited Registered office Level 6, Lifehouse Building 119-143 Missenden Road Camperdown NSW 2050 T: +61 2 9562 5042 F: +61 2 9562 5008 www.anzup.org.au @ANZUPtrials / @BTBPedalthon ANZUPtrials / Below the Belt Pedalthon ANZUP @ANZUPtrials ANZUP Cancer Trials Group ACN 133 634 956 | ABN 32 133 634 956

Published by ANZUP Cancer Trials Group Ltd. Copyright. Editor Abigail Gatling. Contributing editor: Claudia Brooks Graphic design by Designcycle 4 A LITTLE BELOW THE BELT

What’s inside: 05

A message from the ANZUP Chair

ANZUP CEO update

Consumer Advisory Panel update

2020 Annual Scientific Meeting

Friends of ANZUP

Making ANZUP tick: Meet our volunteers

What is a clinical trial?

Spotlight on Penile Cancer

Faces behind cancer: Wayne’s story

Spotlight on Testicular Cancer

Testicular Cancer Trials

Spotlight on Prostate Cancer

Faces behind cancer: Talking Urology

Prostate Cancer Trials

Spotlight on Kidney Cancer

Kidney Cancer Trials

Spotlight on Bladder and Urothelial Cancer

Bladder Cancer Trials

Trials in Follow Up

ANZUP’s Community Champions

How does your donation make a difference?

Get inspired & host your own

Below the Belt Pedalthon, Sydney

Below the Belt Research Fund

Thank you to our Sponsors & Supporters

Message from the Chair, Professor Ian Davis Welcome to this latest edition of “A Little Below the Belt.” Those of you who see me in person know that I get a haircut every few months,1 usually when I start walking into things because it covers my eyes sheepdog-style. I’m torn at these times: having neatly trimmed hair admittedly looks better, it’s easier to maintain, and I do enjoy the experience; on the other hand, it has a tendency to form a curly mop that catches the wind while driving or when walking on the beach, and that takes me back to my younger days. My younger days. About that. Every time I look in the mirror now I am reminded that “there is no cure for the common birthday”.2 The grey now well outnumbers the brown, and although social convention advantages older men including these sorts of changes in appearance, those changes together with body fat redistribution, loss of muscle mass, a distinct inability to match my previous physical endurance records, and a general mastery of the ability to relax,3 all inexorably remind me that there is a possibility I am starting to advance in years. And that’s not such a bad thing for me, and indeed for most of us. Being young is a wonderful thing, but aside from the obvious physical advantages, would any of us have a reason to want to go back there? For most of us, weren’t our younger days characterised by wishes that we could have more responsibility, or more money, or a life partner, or the job that we wanted, or something else that sat in our future and now actually is the present? We continually looked to the future, which maybe is why science fiction is one of my favourite forms of literature.

now for various cancers, and the tools we have to support our patients better, were pretty much science fiction and dreams back when I started. We did not have effective treatments to block chemotherapy-induced nausea and vomiting. The drugs we used to fight cancer literally were found essentially by trial and error: go to somewhere like the Amazon, find a cool plant, distil out some chemicals, see if they kill cancer cells in the lab, work out how to give them to humans, and hope for the best. That is no joke: that is actually what happened most of the time, until recently. Many of the anti-cancer drugs in current use today did not exist. Whole classes of treatments in fact did not exist and were only dreamed about. We did not have treatments that were rationally designed to block specific biological processes, like the ways that cancer cells support their survival and spreading, or how the immune system can be harnessed. For decades I looked after people with certain types of cancer, like kidney cancer or melanoma, for which we knew we really had no effective treatments. Science fiction is great but I admit there were times when I thought that meaningful improvements in treatment of those conditions might not happen during my lifetime. Here we are now, on the verge of the year 2020. It is no coincidence that the theme of the ANZUP Annual Scientific Meeting for 2020 is “Clear Vision.”4 I look back over my oncology career, and I see that some parts of it are now almost unrecognisable.

The same principle applies in cancer care. I started my training in medical oncology as a third year resident in 1986, which is well over 30 years ago for those playing at home. It was not only a different millennium, it might as well have been a different planet. The treatments we have

A LITTLE LITTLE BELOW BELOW THE THE BELT 5 A

Kidney cancer, melanoma, and so many other cancers: we now have treatments available that can not only give the chance of improved survival, but for some people might offer the prospect of cure5 where it did not previously exist. People who previously had relentlessly progressive cancers now might have the possibility of living with their cancer as a chronic disease, like diabetes or high blood pressure. Nobody wants diabetes or high blood pressure or cancer, but if you can live with it and it does not adversely affect you, then that’s the next best thing. We also understand much better now how to prevent or support people through the side effects of treatment, and we are now starting to listen much more effectively to people who are living the experience of cancer and telling us how we need to change what we do. These are amazing times. How has this happened? Well, I can tell you that it was not through “breakthroughs,” or sudden inspirations, or the chance emergence of geniuses. It has happened through the sheer unrelenting slog of research, and it has happened for the most part in small and often unexciting steps. Every so often there is a new insight or a new discovery that opens up a whole new field with its associated opportunities. The reality is though that it has happened through the concerted efforts of armies of hard-working and under-recognised people. These people slave away in laboratories and clinics to understand cancers better and why they behave differently. Once you have worked out the mechanisms underneath all of this you can then start to think about how to influence it favourably. That requires in turn more careful laboratory work. All of that work is incredibly important but at the same time none of it means anything if we do not take the next step: we have to work out how to use that information to work out new ways to improve cancer outcomes, and then test those new approaches to see if they really do make a positive difference. The 2018 Nobel Prize in Physiology or Medicine was given to two luminaries in the field who helped to uncover something that few people had realised before: the reason the immune system did not reject cancers like it rejects a transplanted organ is not because the immune system is broken in cancer, but because it is constantly being suppressed by the cancer. Cancers are sneaky: they have worked out ways to be invisible to the immune system, or to survive an attack by the immune system. Those two researchers received the Nobel Prize because they described some of the mechanisms underlying all of that. That in turn led to development of new treatments that changed those immune system control mechanisms, which were then tested in humans, and are now part of our standard treatments for many types of cancer.

PROFESSOR CHRISTOPHER SWEENEY WITH OTHER PLENARY SESSION SPEAKERS AT THE 2019 ASCO ANNUAL MEETING

6 A LITTLE BELOW THE BELT

However, Jim Allison and Tasuku Honjo would be the first to say that they did not do this by themselves. They represent armies of researchers who have done painstaking work in the laboratory. Other people have then taken that work and used it to develop new treatments. Other people have taken those treatments and tested them to see if they make a difference. Other people have taken that information and made sure that the treatments become available to the people who need them. Two people received that Nobel Prize, and it was well deserved, but the difference made for the people who needed it came about because of what was done by those armies of researchers, and what happened afterwards to see if it actually made a difference. That’s where ANZUP and groups like it come in. ANZUP is the Australian and New Zealand Urogenital and Prostate Cancer Trials Group. We are a group of researchers and clinicians that exists to improve outcomes for people affected by genitourinary cancers: cancers affecting the prostate, kidney, bladder, testicles, and penis. Those improvements in cancer outcomes that I mentioned before did not come about by accident. They happened because clinical trials were designed based on better understanding of the biology of cancer and with the advent of new treatments, so that we could have incontrovertible evidence that a treatment worked or did not work. ANZUP lives and breathes this.

We understand that the only way to improve outcomes is to perform high-quality clinical trials that generate evidence that doctors and other health professionals can use in their conversations with people affected by genitourinary cancers, to help them make the decisions that are right for them. We make sense of what comes out of the laboratories. We listen to the needs of our patients. We understand where the gaps in the evidence are and what we need to do to fill them. And with your support, we are making progress. Here’s an example. Prostate cancer relies on male sex hormones like testosterone to help it to grow and spread. The mainstay of treatment of advanced prostate cancer for the last 70 years has been to use measures to reduce testosterone levels, which in turn can lead to slowing down of cancer growth or substantial shrinkage of the cancer, and improved survival, symptoms, and other outcomes. Prostate cancer can start to grow again in some men despite that treatment, and we used to think that this meant the cancer no longer cared about testosterone. Careful work in the lab showed that this was not true: the cancers are often still very dependent on testosterone, but have found sneaky ways around our treatments, including producing their own

CO STUDY CHAIRS PROFESSOR CHRISTOPHER SWEENEY AND PROFESSOR IAN DAVIS WITH ANZUP CEO MARGARET MCJANNETT

hormones to help themselves grow. Clever scientists developed new treatments to block that, which are now standard treatment options for advanced prostate cancer. ANZUP looked at that and asked the question: if it works well in cancers that have already found ways around that treatment, might it work even better if we moved it earlier in the treatment course, before the cancer developed resistance to it? So we designed the ENZAMET trial to answer that question. Over 1100 men with prostate cancer from around the world participated from 83 research centres. We found that not only did it work, it worked even better than we had imagined it might, even allowing for the fact that the standard treatments had improved over that time as well, meaning that people on the standard treatment arm of the trial did better than we anticipated (as they often do). This was a remarkable finding that has changed practice around the world. The trial results were presented in June 2019 at the world’s largest cancer conference and published simultaneously in the New England Journal of Medicine. Amazing, right? Science fiction again. But wait, there’s more! We also asked whether the new treatment affected the quality of life of men on the trial. All treatments have side effects and this one is no exception, but we found that those effects did not outweigh the benefits of the treatment. And there is still more to come. We will look at the impact of this treatment on how health care resources are used. We will look at blood and tissue samples to try to work out why some men benefited and others did not. We have found different patterns of response of the cancer, suggesting that we might be dealing with more than one flavour of prostate cancer even though we could not tell the difference before. And there is still more to come out of this trial that keeps on giving. And that’s just one trial. We are doing many other innovative trials in all of the genitourinary cancers. Some of these are highly likely to change practice; others will give us the information we need to take the next steps towards designing better treatments and interventions. Thankfully ANZUP is made up of people representing a broad range of expertise and experience, so any limits on what we do are definitely not due to lack of imagination. Resources though, and time: those things are tricky. I love science fiction. I said it before. It’s funny though sometimes to go back and look at what was predicted. The events in the film Bladerunner are supposed to be taking place right now, in 2019. Back to the Future 2 was set in 2015. Khan from Star Trek dominated those Eugenics Wars you will remember well from the 1990s. The movie 2001 includes reference to Pan Am. The novel “A Mote in God’s Eye,” set centuries from now, refers to ticker tape computer output. Even the most visionary science fiction authors could not predict what was to happen only a few years in the future. We have lived through these times and our progress continues to amaze even me, the science fiction fan and idealist.

None of this was even a dream when I started my training. So, with that in mind, you are in for a treat inside these pages. You will read about our progress right across the board in genitourinary cancers, including some visionary trial ideas that are in progress or in planning. You will see where we have already made progress. You will see how we are investing for the future, with support for emerging researchers and clinicians, and providing safe spaces for fertile ideas to grow. You will read about our many other initiatives including our scientific meetings and educational processes. And most importantly, you will meet the incredible people who drive all of this, and do it because they genuinely care about others. They want to make the world a better place, and reducing the impact of cancer is a great way to start. So, for me, each of those grey hairs actually means something. I have had the privilege of seeing my field undergo incredible transformation over the course of my career. That is still unfolding before my eyes, and I am incredibly privileged that I get to play a small part in it. I also get to know and work with some truly brilliant and caring people. You can also be involved.

The information you will read about here will help you understand why these cancers need work, and why research is so important, and why all of us need to have a loud voice to make it clear that this work needs to be supported. You might even want to provide some financial support yourself: our web site at www.anzup.org.au will show you how, if that is right for you. But every voice raised in support of cancer research and specifically for clinical trial research makes a difference, and we are very grateful to you for your interest and your support. It will help people like me enjoy the wind in our grey hair for even longer. Maybe I’ll defer that next trim for a little longer… IAN DAVIS Chair, ANZUP 1

Whether it needs it or not!

Actually there is one, and most of us try to avoid it.

“Relax,” which I am reliably informed is spelled “L.A.Z.Y.”

If you know anything about ANZUP, you will know we love a good joke. How could we let 2020 pass without some reference to vision?

Traditionally oncologists don’t get to say “cure” very often so we like to use that word when we can, as long as it’s appropriate.

A LITTLE BELOW THE BELT 7

11 YEARS OF ANZUP by Margaret McJannett, ANZUP CEO

As this decade draws to a close, it is a moment to reflect on where we started, and how far we have come since 2008. Whilst we have grown exponentially since our inception, our key priority has remained the same: to conduct high quality clinical trial research, in our efforts to improve both treatments and outcomes for patients and their families affected by below the belt cancers.

scope of the bladder cancer subcommittee to include upper tract urothelial (UTUC) and penile cancers, which is already having impact with discussion around ANZUP collaborating with international trials to answer important questions in these rare cancers. Currently we have 7 ANZUP-led active and recruiting trials, 3 co-badged trials, 5 protocols in development, 25 concepts presented across 5 concept development workshops and 6 Below the Belt Research Grants awarded (to name a few).

Looking back over the course of the year there is no doubt 2019 has seen some major milestones for We continue ANZUP. In particular, in June we celebrated a To further improve health outcomes for patients, to build on and major achievement with our ENZAMET trial ANZUP continues to expand on educational featuring at the 2019 American Society of develop high quality and mentoring opportunities for our Clinical Oncology (ASCO) Annual Meeting, in membership. We have an built an impressive cutting edge Chicago. ASCO is the world’s premier scientific calendar of educational events such as our clinical trials meeting for cancer health professionals. The Annual Scientific Meeting, the Genitourinary ENZAMET trial was selected as one of four, out (GU) Preceptorship, the Best of GU Oncology of over 6,000 abstract submissions– an incredible Evening Symposium and, this year, five concept accomplishment. development workshops. Each of these events provide a platform to present and discuss the latest updates in The trial showed a 33% improvement in overall survival and cancer diagnosis, treatment, research and supportive a 60% improvement in progression-free survival, for men care. Our concept development workshops encourage with metastatic hormone sensitive prostate cancerwho members to consider submitting their ideas/concepts for received enzalutamide. broader feedback from a multidisciplinary panel including senior investigators, with the aim to be transformed into This translated into 80% chance of survival at fully-fledged ANZUP clinical trials. 3 years with enzalutamide versus 72% with Increasing non‐steroidal anti‐androgen therapy (NSAA). ANZUP continues to receive infrastructure engagement It certainly launched us onto the international funding from the Australian Government of the stage! Special thanks goes to the Study through Cancer Australia. This financial and Co-chairs – ANZUP Chair Professor Ian Davis in-kind support is greatly valued however we membership and Professor Christopher Sweeney for their still require independent funding to support each commitment and leadership. clinical trial. We were also featured in a Channel 9 news story on the importance of Translational Research in Clinical Trials. Men who participated in ANZUP’s ENZAMET and ENZARAD trials were asked to consent to the collection of blood and tissue samples for the purpose of translational research. Over 100,000 samples have been collected around the world through the ENZAMET and ENZARAD trials, and are in the process of being transported to our central biobank at Chris O’Brien Lifehouse in Sydney. This will be one of the largest (if not the largest) collections of its type in Australia. Our clinical trials portfolio continues to grow across the major cancer we represent. This year we expanded the

8 A LITTLE BELOW THE BELT

Clinical trials research is time consuming and expensive. It is critical to develop innovative and sustainable funding to allow us to instigate trials and support funding applications.

2019 BELOW THE BELT PEDALTHON, SYDNEY

We held our second Pedalthon event in In addition, we would like to thank our in-kind Strengthening Melbourne – which was a huge success, supporters. By providing their services or and building building on all the hard work that was put into products pro-bono their generosity has let us our capacity to the inaugural event in 2018. The Pedalthon, better engage with those affected by kidney, deliver on our held at Sandown Racecourse, was jam-packed bladder, testicular, penile and prostate cancer, Strategic Plan full of fun and entertainment with 34 teams and and to spread the word about the importance of 150 riders participating in the challenge, raising clinical trial research. over $77,000 for the Below the Belt Research Fund. I extend my thanks to the hard work and commitment of On another perfect Spring day we welcomed over 170 so many. The level of support we receive from our ANZUP riders to the Sydney Pedalthon completing an amazing membership and within the medical research community, collective total of 2,249 laps, 8,890 kilometres (that’s from from the wider business community, organisations large Sydney to Perth and back again), raising an extraordinary and small, and individuals whose lives have been touched $160,000. The success of this event has provided a by GU cancer is nothing short of phenomenal. platform to raise awareness about below the belt cancers We hope that you enjoy this edition of ‘A little below as well as the importance of clinical trials. We have now the belt’. By producing this magazine, we aim to provide raised over $1.65 million since our first Pedalthon in information on clinical trials and ANZUP to the families 2014 with 100% of these vital funds supporting and patients affected by below the belt cancers. our research. We are extremely grateful to In doing so, we hope to keep our ANZUP community the Pedalthon community; riders, donors, in the loop with our regular activities, the latest events supporters and volunteers and hope the and resources. If you are seeking more regular updates seventh year will be as successful as from us, we welcome you to join our free initiative, previous Pedalthons. The 3rd annual “Friends of ANZUP” to help you stay connected with Melbourne Pedalthon will be held at the work we do. Visit the ANZUP website to sign up: Sandown Racecourse on Sunday, 15 BELOW THE BELT https://www.anzup.org.au/friendsofanzup.aspx March. For more details, visit www. RESEARCH GRANTS belowthebelt.org.au/melbourne. AWARDED ANZUP is now recognised nationally and internationally IN 2019 for its genitourinary clinical trials. This does not happen Excitingly, there have been several by chance - it is a consequence of a significant amount other fundraising initiatives this year in support of of effort from a number of extremely generous people. ANZUP’s Below the Belt Research Fund. The first ever Thank you for your continued support to help us achieve ANZUP Trivia Night, hosted at the Lord Dudley, was a our mission to improve the lives of over 27,000 Australian roaring success. We are very grateful to Honor Couche men and women affected by below the belt cancers for her generosity hosting the night. We were also every year. delighted to have Macquarie Bank host a morning tea to raise both funds and awareness of ANZUP. Thanks On behalf of the ANZUP management team, I wish you again to Joe Park & Thushara Gunawardena for their and your families a happy and healthy festive season. efforts in making this such a success. See page 48

to learn more about our ANZUP fundraising activities. We also extend our gratitude to all those who continue to show their support to ANZUP, both individuals and organisations who fundraise or support us in their own ways. Without your energy, endorsement and funds, we would not be able to continue to propel towards our mission of CONCEPT truly improving treatments and outcomes DEVELOPMENT for those touched by GU cancers.

MARGARET MCJANNETT ANZUP CEO ANZUP TEAM AT 2019 ASM

WORKSHOPS IN 2019

A LITTLE BELOW THE BELT 9

DO YOU HAVE DO YOU HAVE A STORY A STORY YOU COULD YOU COULD SHARE WITH SHARE WITH OTHERS?

OTHERS?

Share your story with us here friends@anzup.org.au

Createyour awareness and let Share story with us here anzup@anzup.org.au others know they are Create awareness and let others know they are not alone. not alone

FIGHT CANCER

BELOW THE BELT • TESTICULAR • PROSTATE • BLADDER • KIDNEY • PENILE 10 A LITTLE BELOW THE BELT

14 A LITTLE BELOW THE BELT

Consumer Advisory Panel update By Belinda Jago, CAP Chair

The ANZUP Consumer Advisory Panel (CAP) provides a mechanism for advice to be offered on specific studies, general research directions, and priorities from a consumer perspective. The CAP reviews specific clinical trial concepts from the consumers’ perspective including validity of overall trial questions and comments regarding the protocol, lay summaries, Patient Information and Consent Form and other ANZUP issues.

CAP connections 2019 has seen a number of changes to our CAP. First and foremost, we are delighted to welcome our newest CAP members Michael Twycross and Melissa Le Mesurier to the ANZUP CAP following a successful introduction at the recent ANZUP ASM 2019, with the theme “Making Connections”. Michael and Melissa’s brief bios are included here. They are an especially welcome addition to the CAP, as we have not had a Bladder Cancer representative since early this year so they have hit the ground running. We are very excited to have both Melissa and Michael on board, who are already making a valuable contribution.

My introduction to ANZUP came through A/Prof Guy Toner, who was our daughter Bec’s oncologist at Peter Mac. As a family we had already done a great deal of fundraising to help support the ONTrac Adolescent and Young Adults service, and when she died in Oct 2011 I felt the need to do more than just fundraise. I wanted to try and use the knowledge that I had gained through an unwanted cancer experience and put it to good use. I spoke to Guy about this and he told me to come back in a few months, “I have an idea”, he said, “but take some more time out.” A few months later he talked to me about ANZUP and the CAP which was in its early stages, and it sounded very interesting. From there, the connection was made and now 8 years later I am still here. I truly enjoy the opportunity to be involved with a great group of individuals who, like me, want to give something back in a meaningful way. On behalf of the CAP we wish everyone a happy and healthy festive season with your family and friends. We look forward to another successful and productive year ahead as we continue to build on ANZUP’s solid foundations.

Making connections is a very important theme for the ANZUP CAP as it is the connection of us as patients and carers with our treating teams that leads to the introduction of new CAP members. We still have a core group of CAP members who have been with ANZUP since the CAP’s inception in 2012. Each one of us has been connected to ANZUP through an ANZUP member, and both I and Ray, CAP Deputy Chair, have highlighted ours in this edition of the consumer magazine. These relationships are an integral part of the process of creating a committed Consumer Advisory Panel.

THE ANZUP CAP WITH ANZUP STAFF AT THE 2019 ASM

A LITTLE BELOW THE BELT 11

Welcome to our new CAP members!

Michael Twycross

At the 2019 ANZUP ASM, we welcomed two new members to our Consumer Advisory Panel.

Melissa Le Mesurier Melissa Le Mesurier, originally trained as a journalist, has 25 years’ experience as a senior corporate affairs executive with blue-chip organisations such as Medibank, Kraft/Cadbury, Foster’s Group and Australian Airlines. Melissa is currently the Principal of MLM Consulting which advises executives and boards on strategy, reputation, cultural change and communications. Both professionally and personally, Melissa is passionate about medical research, consumer engagement and patient empowerment – something sparked when her (now adult) son was diagnosed with cystic fibrosis in 1996 and strengthened when she was diagnosed with bladder cancer in 2017. She is a Graduate of the Australian Institute of Company Directors and a Director of the Lung Foundation Australia. She was previously a member of the Alfred Hospital’s CF Consumer Advisory Panel and founding Chair of the Royal Children’s Hospital Cystic Fibrosis Research Trust (1999-2009) which has raised more than $3 million for research and funded about 20 clinical fellows.

MICHAEL PARTICIPATING IN THE CYCLE CHALLENGE AT THE 2019 ASM

Michael is 58 lives in Melton, Victoria, and married with 3 adult children and 5 grandchildren. His life was about family, running, work and the motor sport club and was pretty healthy until his diagnosis with bladder cancer in December 2016.

Priorities have changed a little in the past couple of years with family becoming number one, ‘Living life for them and me, is what’s most important now’. Michael spends more time now with his family, plans more holidays (to NZ, SA, WA to name a few), helps his club prepare for events, enjoys time with running friends and is focusing on improving his fitness – which hopefully will assist with fending off any recurrence of cancer – including some incredible endurance challenges. Michael has a renewed focus on enjoying what life has to offer, including good food, coffee and wine. He has found being part of an ongoing bladder cancer trial has also opened up a new avenue of interest, and opportunities to make a difference, like raising funds for ANZUP in support of the work they do to improve outcomes.

Make a difference with ANZUP We need your help to improve outcomes for people affected by these below the belt (prostate, testicular, penile, bladder and kidney) cancers and for future generations. Any donation, large or small, goes straight into the hands of experts to find the answers we need.

To find out more or to donate please go to www.anzup.org.au/donate 12 A LITTLE BELOW THE BELT

My connections By Ray Allen, CAP Deputy Chair

ANZUP’s Annual Scientific Meeting held in July this year followed the theme of ‘Making Connections’, looking at things such as raising awareness of cancers and the importance of clinical trials. I’d like to look at what this means from a personal perspective as a prostate cancer patient, and how this led to my involvement with the ANZUP CAP. My personal cancer journey began eight and a half years ago with a Friday afternoon diagnosis of prostate cancer. That ruined my weekend good and proper, but it was also the day that I became connected – connected to my cancer. If we had to live together, just like any relationship, I had to learn about this new partner. That wasn’t easy. Good information was sparse and ranged from confusing to inaccurate. In the absence of good, widely available information, I connected with my clinical team, bombarding them with questions, which were always well received and answered comprehensively. Of course, through all this my connection to my support group, my family, was an essential element in dealing with the darker moments. Friends with similar experiences came alongside and I realised that some were in fact seeking connections of their own. I learned to become very open about my cancer, not just the physical side of things but the roller coaster of emotions that come with a diagnosis. A little over a year into my recovery, at a routine follow up consultation with my Urologist, I was asked a few rather unexpected questions relating to my retirement and if I had any interest, and the time, to be involved with research into prostate and other cancers. Predictably, I responded that I didn’t have any level of medical background, and that I didn’t see where I could add anything useful. It was quickly pointed out to me that I had a valuable first-hand connection with the disease and that my experience and perspective could be a very useful adjunct to many aspects of the development and promotion of clinical trials. As well as being an excellent doctor, my Urologist also proved to be a very good salesman. I left the consultation with an invitation to attend ANZUP’s Annual Scientific Meeting (the following weekend as it happened) to see if I would consider joining the Consumer Advisory Panel. And that’s where my connection with clinical trials began. My time on the Consumer Advisory Panel has been an amazing personal engagement and I’m sure that all my colleagues on the CAP will endorse this view. I am constantly in awe of the skills that are assembled within ANZUP and the tireless commitment and dedication,

freely given, towards making the lives of cancer sufferers better and, one day, eradicating the diseases altogether. My connection with my disease and the progressive accumulation of knowledge from my time with ANZUP have provided me with tools to better understand the needs of those men and women who, on their ‘Friday afternoon’, will receive a cancer diagnosis. My role on the CAP, as with my colleagues, is to connect and make available our collective experience to the various ANZUP membership streams and to the public we serve. As CAP members, our connection with the membership is the key to being able to do our job. We are invited to participate as early as the concept development stage and through to trial inception. We aren’t there to make up the numbers. The CAP members bring a unique perspective to the process and the respect we enjoy comes through personal involvement and engagement. The CAP also has as one of its principal responsibilities, the task of raising general public awareness of the benefits of clinical trials. Each year the CAP assists with presenting a Community Engagement Forum, conducted as part of the Annual Scientific Meeting. The Forum is open to the public and allows access to a panel of some of Australia’s most senior specialists in the area of Urogenital Cancers. A video of the 2019 Community Engagement Forum is available on our website [https:// anzup.org.au/content.aspx?page=asm-community]. Better still, attend the 2020 Forum to be held in Adelaide next July. Each year that I’m involved with ANZUP, the CAP sees a marked evolution in both the quantum and the complexity of the work being undertaken. We are seeing trends toward individualised medicine, the search for biomarkers which might help predict the progression of disease, and extensive bio databases capable of predictive modelling to complement trial findings. We are also seeing a greater recognition of the role of exercise in disease prevention and very importantly, a stronger emphasis on a patient’s quality of life. The increased complexity heightens the need for strong connections within ANZUP and with the public. It is both challenging and exhilarating. For me, my involvement with ANZUP has been life changing. Cheers, Ray

A LITTLE BELOW THE BELT 13

2019 ANZUP Annual Scientific Meeting The ANZUP Annual Scientific Meeting presents a key opportunity to expand on our educational and mentoring opportunities for the next generation of scientists and clinical researchers. Attracting over 390 delegates, comprised of health professionals across 25 disciplines – from medical oncologists, to nurses, to trial coordinators, the ANZUP ASM provides a key platform to discuss and present the latest updates in GU cancer treatments, research and supportive care. Our ASM aims to ask the tough questions, arousing the brainstorming and discussion amongst key thought leaders in the genitourinary space that will ultimately turn ideas into fully fledged clinical trials. The theme ‘Making Connections’, was more relevant than ever bringing together a superb line up of international and national speakers under the one roof. It was also a great opportunity for people to connect with their peers, catch up with old colleagues and make new friends. Over the three days, we were treated to the most up to date scientific presentations from our impressive international faculty: Kelly Parsons, Phuoc Tran, Alison Birtle, Catherine Paterson and Betsy Plimack who shared their insights and experience with close to 400 attendees.

PROF IAN DAVIS

Turner gave us a thought provoking talk on “Touching the humanity: making authentic connections” followed by Declan Murphy entertaining us with some insights into avoiding Obsolescence as a cancer surgeon. The evening symposium was thoroughly entertaining. With the theme ‘The Art of Connecting’ we heard from our gifted faculty Kelly Parsons (also an award-winning author), Alasdair Foster (Professor, Culture in Community), and Alison Birtle, treating us to her rendition of Send in the Clowns showing us how connecting through creativity can help with the stresses of work/life demands while caring for our cancer patients.

The ASM kicked off with an array a pre-conference meetings on Sunday including the ANZUP PCFA Nurses Symposium, the Translational Research Symposium and the MDT Masterclass. The day concluded with another excellent ANZUPx session, which we first introduced at our ASM in 2018. This year Jane

14 A LITTLE BELOW THE BELT

PROF LISA HORVATH

The Scientific Program on Monday and Tuesday involved close to 50 presentations, including a very interesting and stimulating discussion at the Tuesday breakfast session: ‘Is Social Media Worth the Risk for Healthcare Professionals’, ably chaired by Haryana Dhillon and featuring Henry Woo, Craig Gedye, Belinda Jago and the ever delightful social media expert Josh Britt. Attendees were also fortunate to hear from ANZUP Chair and ENZAMET Co-Chair Ian Davis share the ENZAMET results, as presented at the ASCO plenary session in June. The ANZUPled trial showed a 33% improvement in overall survival and a 60% improvement in progression free survival, for men with metastatic hormone sensitive prostate cancer who received enzalutamide in addition of to the standard of care therapy (androgen deprivation therapy, ADT), with or without docetaxel chemotherapy. This year we saw our Twitter engagement reach close to 2.8 million #ANZUP19 impressions and over 1,600 tweets – with Haryana Dhillon, Ian Davis and Henry Woo as key social media influencers. Attendance was impressive with close to 400 delegates – all testament to the high quality, collegial, educational, entertaining ASM for which ANZUP has become renowned.

A LITTLE BELOW THE BELT 15

Community Engagement Forum ANZUP held the seventh annual Community Engagement Forum in Sydney on Sunday 20th July, welcoming an audience of over 100 attendees. This free event featured presentations and panel discussions covering a variety of important and topical subjects including quality of life, treatment choices, survivorship, impacts on intimacy and the cost of cancer care. The forum gave the public the opportunity to engage with an experienced team of healthcare professionals and patient advocates, while learning about ANZUP and our clinical trials research program. We encourage you to watch the presentations which are located on our website, to check out the engaging and informative talks from the session: https://www.anzup.org.au/content. aspx?page=asm-community

From our 2019 attendees: s tion given wa “The informa d will give me very good an oints e discussion p more effectiv about cancer” when talking “The knowledge and experience of the speakers was wonderful, esp ecially their ability to convert difficult scie ntific information to the audience”

great “The forum had kers, with high quality spea vant material” informative, rele “Excellent all round info reg arding trials research, quality of life , nurses support and case study dis cussion”

16 A LITTLE BELOW THE BELT

The forum began with ANZUP Board Chair, Professor Ian Davis, providing a brief overview of ANZUP and an explanation of how ideas move from concept stage to clinical trials. Consumer Advisory Panel Chair Belinda Jago then discussed consumer involvement at ANZUP, whilst Professor Shomik Sengupta shared highlights from ANZUP’s recent research. Topics also included ‘Getting the right balance in life after cancer diagnosis’ with A/Prof Haryana Dhillon, ‘Treatment impacts on sexuality and intimacy’ with Dr Kath Schubach, and Dr Louise Emmett talked about ‘Clever proteins in prostate cancer’ with the TheraP trial. The treatment choices and decision making Q&A session was a highlight for the audience. Dr David Pryor and patient Darren Nolan provided an engaging account of their shared decision making process in relation to clinical trial preparation after Darren’s kidney cancer diagnosis. A dynamic panel discussion with audience participation was facilitated by Leonie Young and wrapped up another informative and interactive Q&A session.

The next Consumer Engagement Forum will be held Sunday 19 July 2020 in Adelaide. We encourage you to come along!

in!

Have you or your loved ones been affected by below the belt – prostate, kidney, bladder, penile and testicular – cancers? Do you want to join a community that gives you access to the latest forums, publications, fundraising activities and trials? Join “Friends of ANZUP” and connect with people whose lives have been impacted by below the belt cancers, and learn from ANZUP clinical experts and researchers. “Friends of ANZUP” provides: • Information about clinical trials research and how to access them, • Support from people who understand the challenges of living with prostate and urogenital cancers, • The community magazine, ‘A little below the belt’ featuring: o regular updates and stories from health professionals and researchers, o cancer survivors and cancer trial participants points of view, • Invitation to the annual Community Engagement Forum. Join “Friends of ANZUP” and help us achieve our mission to improve the outcomes and treatment for those living with testicular, penile, prostate, kidney and bladder cancers.

If we can encourage people to ask: “Is there a clinical trial suitable for me?” then we have achieved a major step forward. To find out more visit: http://www.anzup.org.au/friendsofanzup.aspx or email friends@anzup.org.au A LITTLE BELOW THE BELT 17

Making ANZUP tick: Meet our Volunteers

LESLEY TINKLER AND JO STUBBS

For the past decade, ANZUP has had the privilege of two committed volunteers – Jo Stubbs and Lesley Tinkler – whose ongoing dedication to supporting ANZUP has been vital. We took the opportunity to sit down and chat with Jo and Lesley, to find out what inspired them to volunteer, what they have learnt from their time at ANZUP and what their favourite part has been on their volunteering journey. You have both been such dedicated and committed ANZUP supporters for many years now. How long have you been volunteering with ANZUP? Lesley: I’ve been here 9 years, so I’ve been here since ANZUP was small. When you stop and look at what’s been achieved… the growth has been really rapid. Jo: I’ve been here for 8 years. When we started it was just Margaret (ANZUP CEO), one part time staff member and Lesley… so the ANZUP empire has grown somewhat (laughs). How did you learn about ANZUP, and what inspired you to start volunteering? Lesley: I was friends of a friend of Margaret’s. I had a little bit of time and I didn’t want to fill it up with nothingness. I started coming in one day a week and it’s continued on for 9 years now. It was daunting to me because I hadn’t worked for a while, but it has all worked out really well. Jo: I met Margaret back in the late 80s. About 9 years ago, she mentioned to me that she had started this new job, and she suggested that I come in and give Lesley a hand one day week. Back then, we were so busy because we printed everything, including this consumer magazine, ourselves.

18 A LITTLE BELOW THE BELT

What’s your favourite part about volunteering at ANZUP? Jo: We really have some permanence here. Week after week, we have established a routine that works. We know that what we were doing has meaning, and our role makes a difference. Lesley: I’d say the people, and the satisfaction of knowing we’ve reached a stage where we can make small decisions and know we will be backed in that. Supporting Marg is at the foundation of our role at ANZUP, and it has been a pleasure to do so. What’s something you’ve learnt from your work at ANZUP? Jo: I have learnt that there are an incredible amount of people out there who are moving heaven and earth to find a cure for cancer. People who are so passionate about that being their job. It really blows me away. You attend something like the ASM and you think, there’s people really working on this, really trying to make a difference and it’s incredible to see. What would you say to someone who’s considering volunteering? Lesley: I think volunteering when you’re retired is essential. It is so enjoyable to spend time with younger people and learn new skills. Jo: We’ve really learnt so much about what life today is like. Social media, and how to use it effectively, I’d never understood any of that. Volunteering can help you keep up with technology. Also - you’ll never be thanked so much in your life. The gratitude is astounding.

Clinical trials

What is a clinical trial? ANZUP is the leading clinical trials group for urogenital cancers in Australia. But what does that mean?

must have a reasonable understanding of your role in the research study and be freely willing to take part in it.

A clinical trial is a specific type of research designed to test concepts, answer scientific questions and find new, safer or better ways to help patients with cancer.

Before you and your doctor make a decision about your treatment (whether it is a clinical trial or not), your type of cancer will be diagnosed and staged. Staging reveals how far the disease has spread. Deciding on a treatment depends on many things, including the stage of the disease and your general health.

Clinical trials are tests to work out the effect of an intervention (eg. a treatment, procedure, drug etc) on a group of people with a defined condition (eg. a group of patients all with the same, specific type of cancer).

“The simplest way of putting it is; say you’ve got a new drug that you think is going to work on cancer. You want to know how safe it is, how often it works to shrink the cancer, does it make people live longer, does it make them feel better and how does it stack up against the standard treatments that we already use”

Every clinical trial is designed to answer a set of research questions. If you fit the guidelines for a trial, you may be eligible to take part. Each study enrols patients with certain types and stages of cancer, and a certain health status. A study that involves two or more treatments can only yield reliable answers if all the patients’ cases are the same, so that they can be compared to each other. Your doctor will then go through all the information related to that clinical trial, what it involves in terms of your time, the tests that are done, how many visits to the hospital, the possible side effects of the treatment and any other relevant information you may require. If you agree, you will be asked to sign a consent form. The consent form means you have given permission for a drug or treatment to be used in a way that is not ordinarily used, or to use a trial drug or treatment. If at any time you want to come off the trial, you can. You are not locked in.

Professor Ian Davis, ANZUP Board Chair

All of the major milestones in controlling cancer worldwide have come through clinical trials. ANZUP specifically looks at testicular, kidney, penile, bladder and prostate cancers, which we call ‘below the belt’ cancers. ANZUP has a strong record of successful completion of clinical trials, but we still have a long way to go to help every person affected, at risk or diagnosed with this disease.

Ask your doctor, is there a clinical trial suitable for me?

What happens during a clinical trial?

Before a clinical trial is commenced, rigorous research is undertaken to prove a concept.

If you are a patient involved in a clinical trial, you may receive new treatments not yet available elsewhere. All patients who sign up to a clinical trial are carefully monitored throughout the trial, and followed up after the trial.

How can I find out more about a trial?

There are many types of clinical trials and, depending on which type of trial you go on, how, when and where you are treated may vary.

If you would like to find out more about a trial, ask your doctor whether it is right for you. You may also be proactively referred to a trial by your own doctor or by a doctor who knows your case. Whether you or your doctor initiates the discussion, you

Some clinical trials involve having to go to a major metropolitan cancer centre for treatment. Others, called teletrials, are run through smaller satellite centres and offer the opportunity for patients living rurally or regionally to access clinical trials closer to home, reducing the need for travel.

A LITTLE BELOW THE BELT 19

Clinical trials

Some other types of clinical trials are not designed to test a specific treatment, and may focus rather on addressing supportive care requirements. In these cases, there are very few visits to the hospital. Some of these trials are done online or over the phone. No matter what type of trial you are on, ANZUP members (doctors, nurses, researchers, medical oncologists, radiologists, psychologists and other healthcare professionals specialising in urogenital and prostate cancers) will bring their concepts and experience together to design and monitor the trial in efforts to achieve the best possible treatments and outcomes.

What happens after a clinical trial?

CASE STUDY: In June 2019, ANZUP presented results from ENZAMET (a clinical trial for prostate cancer) at the American Society of Clinical Oncology (ASCO) Annual Meeting in Chicago which showed 33% improvement in survival rates.

Once a clinical trial is completed, the results of the trial are analysed and are then released to the trial participants, the scientific community and the public. The findings of the clinical trials are then used to shape the standard way of treating these cancers in future. That’s why participating in a clinical trial helps our researchers improve treatments and outcomes for all patients.

Clinical trials app ClinTrial Refer In 2019, ANZUP re-released it’s trial based app. Although designed for specialists, it is also a very useful tool for patients and carers. This searchable app allows you to find clinical trials by: • disease (cancer type) • hospital locations where patients are being recruited • clinical trial status (i.e. are sites actively recruiting or are they closed) • inclusion/exclusion criteria (i.e are you suitable for the trial). To download the free app, please visit: • Apple Store: https://apps.apple.com/au/app/clintrial-refer-app/id1475066830 • Google Play: https://play.google.com/store/apps/details?id=com.clintrialrefer.app&hl=en • Or go to the App/Android store and type in ClinTrial Refer

20 AALITTLE LITTLEBELOW BELOWTHE THEBELT BELT

Clinical trials

Clinical trial phases The National Health and Medical Research Council defines the phases of trials as:

Phase 4 studies are done after an intervention has been marketed. These studies are designed to monitor the effectiveness of the approved intervention in the general population and to collect information about any adverse effects associated with widespread use over longer periods of time.

Phase 3 studies are done to study the efficacy of an intervention in large groups of trial participants (from several hundred to several thousand) by comparing the intervention to other standard or experimental interventions (or to non-interventional standard care) as well as to monitor adverse effects and to collect information that will allow the intervention to be used safely.

Phase 2 clinical trials are done to study an intervention in a larger group of people (up to several hundred) to determine efficacy (whether it works as intended) and to further evaluate its safety.

Phase I clinical trials are done to test a new biomedical intervention for the first time in a small group of people (from 20 up to 80) to evaluate safety (e.g. to determine a safe dosage range and identify side effects).

A LITTLE BELOW THE BELT 21

Clinical trials

Questions you may consider if you participate in a clinical trial If you are thinking about taking part in a clinical trial, here are some important questions to ask:

• •

What is the purpose of the study? What does the study involve? What kinds of tests and treatments? (Find out what is done and how it is done)

•

What is likely to happen to me with or without this new research treatment? What could the cancer do and what could this treatment do?

•

What are my options and what are their advantages and disadvantages?

•

Are there standard treatments for my case and how does the study compare with them?

•

How could the study affect my daily life?

•

What side effects could I expect from the study? (There can also be side effects from standard treatments and from the disease itself)

•

How long will the study last? Will it require an extra time commitment on my part?

•

W ill I have to be hospitalised? If so, how often and for how long?

• •

W ill I have any costs? Will any of the treatment be free?

•

What type of long-term follow-up care is part of the study?

If I am harmed as a result of the research, what treatment would I receive?

In the last year: NEW ANZUP CLINICAL TRIAL PARTICIPANTS

921

NUMBER OF ANZUP & CO-BADGED CLINICAL TRIALS*

2016/17

2017/18

2018/19**

*Active trials, including those in follow-up. **2018/2019 Financial Year 22 AALITTLE LITTLEBELOW BELOWTHE THEBELT BELT

Current ANZUP trials If you would like to know more about any of these trials, please discuss with your GP or specialist.

Bladder cancer

Testicular cancer

Prostate cancer

ANZUP Trials

l BCG + MM trial

l TIGER

l TheraP

l PCR MIB

l P3 BEP

l Pain Free TRUS B

Co-badged Trial

l NMBIC-SI

l NINJA l SUBDUE

Kidney cancer

Upcoming Trials:

ANZUP Trials

l #UpFrontPSMA

l KEYPAD

l DASL-HiCaP

l ENZARAD

l UNISoN

l ENZA-p

l ENZAMET

l UNICAB

Co-badged Trial l FASTRACK II

Trials now closed to recruitment

l BL12 l e-TC 2.0 l proPSMA

A LITTLE BELOW THE BELT 23

Spotlight on penile cancer

What is penile cancer?

Penile cancer symptoms

The penis is part of the male reproductive and urinary systems. Penile cancer is a disease in which malignant (cancer) cells form in the tissues of the penis. Most penile cancers are squamous cell carcinomas (cancer that begins in flat cells lining the penis).

Possible signs of penile cancer include sores, discharge, and bleeding.

The stats Penile cancer is rare.

103 men are affected by penile cancer per year

These and other symptoms may be caused by penile cancer. Other conditions may cause the same symptoms. Check with your doctor if you have any of the following problems: • Redness, irritation, or a sore on the penis; • A lump on the penis.

Causes of penile cancer Infection with human papilloma virus is a risk factor for cancer of the penis. Some other conditions that affect the appearance of the skin of the penis can lead to cancer, so it’s important to see your doctor if you notice white, red or scaly patches.

ANZUP MEMBER, DR CATHERINE PATERSON’S RESEARCH FOCUSES ON SUPPORTIVE CARE FOR MEN WITH PENILE CANCER.

Information and statistics on penile cancer is derived from Australian Institute of Health and Welfare https://www.aihw.gov.au/getmedia/8c9fcf52-0055-41a0-96d9-f81b0feb98cf/aihw-can-123.pdf.aspx?inline=true

24 A LITTLE BELOW THE BELT

Faces behind cancer: Wayne’s story At the recent ANZUP Community Engagement Forum in Brisbane, penile cancer survivor Wayne Earle voiced his strong encouragement for more clinical trials for men affected by penile cancer. At the annual ANZUP Annual Scientific Meeting in July, researcher Dr Catherine Paterson shared her findings from a systematic review of empirical evidence to understand the unmet supportive care needs for men and their partners affected by penile cancer. Having two different roles and experiences in dealing with the same issue, we connected Wayne and Catherine and brought them together to discuss all things penile cancer. Here we share a recorded interview between them that provides a spotlight on the treatment, experiences and future priorities for penile cancer research and the take on all this through the lens of a consumer.

The background Dr Catherine Paterson is a clinical academic who specialises in urological nursing. She is Associate Professor in Nursing at the University of Canberra and ACT Health. Catherine is also deputy chair of ANZUP’s Quality of Life Subcommittee. Wayne experienced a 1-year delay in receiving the correct diagnosis for his cancer when he was referred to a specialist dermatologist by his GP. His dermatologist treated Wayne’s lump on his penis with various topical creams, but his lump continued to grow until he finally received a penile biopsy 11 months later. Wayne was diagnosed with aggressive penile cancer on the 30th April 2014. He underwent a total penectomy and due to the aggressiveness of his cancer he further underwent bilateral extended lymph node dissection on the 30th August 2014. He is now proudly cancer free. Wayne is 50 years old and is a family guy, he is blessed with three children. He works part-time as a Systems Analysist in a diverse and dynamic role.

The interview Q: Wayne, can you tell me about the support that you received when you were first diagnosed with penile cancer? Wayne: When I was diagnosed, I was isolated and alone, I tried to find a support group and information, but there was no support in place with any information about penile cancer. Q: How did you decide on your treatment? I was given two different options for treatment because it was too late to have a glansectomy. For me the options were either a partial or total penectomy, because the cancer was already in the epidermis. Then I was told depending on how far, and how aggressive the cancer was, I may also need to have an extended bilateral lymph node dissection at some point later. On the 6th of June 2014 I had the operation. I decided to have the full penectomy. I am glad that I did because I am still here, but I have been on a roller coaster ever since. Q: What information did your Urologist give to you to support your decision making for a total penectomy? The problem was because this cancer is so rare that doctors and nurses probably themselves have not seen this cancer before, and very infrequently, if at all, they do this type of surgery. At the time, I believed that I did in fact get the information about recurrences and percentages, but that information was not given to me on the first visit. My Urologist was quite honest with me, and said, “I need to research this, I need to speak with other people and do my own research, before we go ahead and make decisions”. So, it was not until the second visit that I got information. Then I had to think about what treatment option was going to give me the best quality of life, and help me see my children and grandchildren grow up as a father and grandfather. Q: How did you cope after the operation? I came home after the surgery and I was isolated and thought I was the only person in the whole world to have this type of cancer. It took me 6 months before

A LITTLE BELOW THE BELT 25

I even realised that I was in a depressed state and I needed someone to help me. I was sad, upset and pretty disappointed with the world. Thankfully, I am now seeing a good psychologist who helps and supports me. Q: What happened when you had your lymph node dissection? December 2014 is when I developed the lymphoedema. I think that lymphoedema is worse than the cancer itself, to be honest, because it is ongoing. The cancer is gone, you know what I mean, but the lymphoedema I have this for the rest of my life. It limits my ability to work full time, limits my ability in doing the things that I want to do. My left leg was 22cm bigger than my right leg. My GP referred me to a specialist physiotherapist at my local hospital, and I get measured and garments made every 6 months. She is very good, and specialist trained.

longer on their own, providing that important support network. Yes, they might be 14, 000 miles away but they are not on their own, someone in that group is going to be there 24-7. I did not want men feeling as isolated and alone as what I did 4 years ago. Just getting that one phone call makes it all worthwhile, you know, that you “I did not want men [with are not just helping that person but you’re supporting that a penile cancer diagnosis] whole person’s family.

feeling as alone as what I did 4 years ago. Just getting that one phone call makes it all worthwhile... knowing that you are not just helping that person, but you’re supporting that person’s whole family”

Q: Did you get any support from an intimacy perspective as a couple? No nothing. There was no discussion around that at all. No information provided to us. Also there was no information given to me even about freezing my sperm. It was not discussed if I wanted to be a father again. With my urologist, sexual rehabilitation was not even a topic of discussion. These important issues were not even talked about. Q: Can you please tell me about checkyourtackle organisation? I first developed the charity called checkyourtackle, then we developed a website, a facebook page and a support group. The support group helps men and their partners all over the world - we have members in all different countries. We have 177 members in our support group and sadly over the past few years 20 men have died because of their penile cancer. We focus on education and awareness, the cancer is real, and here is what to look for. Then secondly, if you know someone who is affected by penile cancer, we have a support network, people to talk to and support you. Q: What type of support do you provide to men and their partners affected by penile cancer? In the short 3 years I have had many phones calls, many emails, and messages from men and their partners needing support. You know just having the knowledge that we are helping to support men so they are no

26 A LITTLE BELOW THE BELT

Q: What are the future research priorities from your perspective. What do we need to be focussing our research efforts on?

For me, organ sparing. Newer techniques and approaches to help men save what they have got. I believe my problem and why I had to have a total penectomy was because of a delayed diagnosis. So, it is all about awareness and having guys talk about it. Also I think finding better ways of supporting people because I was not told how to cope with new function for urination (I have a perineal urethrostomy, an exit for the urethra into the perineum) or that I would have phantom erections for 6 months and depression. Three top research priorities are developing 1) better innovative approaches for organ-sparing surgery, 2) importance for education and awareness, and 3) support for rehabilitation. Q: What advice would you give to another man? If you get a little lump on your penis then get it checked. It could be an in grown hair, but you need to get it checked. Make sure you make the right decision to achieve the best outcome for you. Make sure you find the right doctor, specialist urologists, and get a second opinion. Get the information. Also be aware that you will go through a whole lot of emotional, psychological and physical stuff that you will not be ready for, but we can offer support through the https://www.checkyourtackle.com/support group. Also you can visit https://www.cancer.org.au/.

Q: Any other final comments? Life goes on. If I can help other men, then I have done my purpose. If you or a family member is seeking support or information on Penile cancer, or you’d simply like to learn more, be sure to visit Wayne’s organisation: https://www.checkyourtackle.com/

Spotlight on testicular cancer The testicles are two oval glands that sit below the penis in a pouch of skin called the scrotum. They are part of the male reproductive system and are also called testes (or a testis, if referring to one). Testicular cancer was once a lethal disease, but is now almost always curable, even when it has spread, because of new treatments tested carefully in clinical trials. We still need to do better. This can only happen through understanding the science and by performing clinical trials to see which treatments are the ones most likely to help.

800+

diagnoses in Australia each year

of all newly diagnosed cancers in Australia

23 deaths will result from testicular cancer in 2019

What is testicular cancer?

Testicular cancer symptoms

After skin cancer, testicular cancer is the most commonly diagnosed cancer in men aged 18 – 39. Each year approximately 800 men are diagnosed with testicular cancer in Australia. This equates to 1% of all cancers in men.

Testicular cancer may cause no symptoms. The most common symptom is a painless swelling or a lump in a testicle.

Germ cell tumours are the most common testicular cancers. Under a microscope there are two main types that are quite different when observed – seminoma and non-seminoma cells. Seminoma cells usually occur in men aged 25-45 but can also occur in men over the age of 60. This form of testicular cancer develops more slowly than non-seminoma cancers. The faster developing, rarer form, of testicular cancer occurs in younger men in their late teens and early 20s. In 2019, it is estimated that there will be 852 new cases of testicular cancer diagnosed. For Australian men, the risk of being diagnosed with testicular cancer by the age of 85 is 1 in 218. The rate of men diagnosed with testicular cancer has grown by more than 50 per cent over the past 30 years, however the reason for this is not known. The five-year survival rate for men diagnosed with testicular cancer is close to 98 per cent. In 2019, it is estimated that there will be 23 deaths from testicular cancer.

Less common symptoms include: • Feeling of heaviness in the scrotum; • Swelling or lump in the testicle; • Change in the size or shape of the testicle; • Feeling of unevenness; • Pain or ache in the lower abdomen, the testicle or scrotum; • Back pain; • Enlargement or tenderness of the breast tissue (due to hormones created by cancer cells).

Causes of testicular cancer An undescended testicle as an infant, or family history, that is - having a father or brother who has had testicular cancer - are a couple of factors that may increase a man’s risk of testicular cancer. There is no known link between testicular cancer and injury to the testicles, hot baths, wearing tight clothes or sporting strains.

A LITTLE BELOW THE BELT 27

ANZUP trial - testicular

Current ANZUP trials TIGER Status: Active & recruiting Location: Australia wide & Internationally Activated sites: 13 + climbing Patients recruited: 5 â&#x20AC;˘ Patients required: 60 + 420 internationally

This randomised phase III trial will study how well standard-dose combination chemotherapy works compared to high-dose combination chemotherapy and stem cell transplant in treating patients with germ cell tumours that have returned after a period of improvement or did not respond to treatment. Drugs used in chemotherapy, such as paclitaxel, ifosfamide, cisplatin, carboplatin, and etoposide, work in different ways to stop the growth of tumour cells. They either kill the cells by stopping them from dividing or stop them from spreading. Giving chemotherapy before a stem cell transplant halts the growth of cancer cells by stopping them from dividing or by killing them. Giving colony-stimulating factors, such as filgrastim or pegfilgrastim, and certain chemotherapy drugs, helps stem cells move from the bone marrow to the blood so they can be collected and stored. Chemotherapy is then given to prepare the bone marrow for stem cell transplant. The stem cells are then returned to the patient to replace the blood-forming cells that were destroyed by the chemotherapy.

It is not yet known whether high-dose combination chemotherapy and stem cell transplant are more effective than standard-dose combination chemotherapy in treating patients with refractory or relapsed germ cell tumours. Up to 420 patients will be enrolled in Australia, New Zealand and other countries. Currently we have 3 patients enrolled and 4 number of sites open. This study is currently active and recruiting. Please speak with your doctor if this is of interest to you or someone you know. ANZUP is collaborating with the Alliance for Clinical Trials in Oncology (USA) and EORTC (Europe) and the NHMRC Clinical Trials Centre. We thank and acknowledge the Movember Foundation for their funding support to conduct the TIGER trial. For more information, please go to the trials page on the ANZUP website: https://www.anzup.org.au/content. aspx?page=testicularcancertrialdetails.

ANZUP are currently running a number of testicular cancer trials. For more details information about these trials, go to the ANZUP testicular cancer trials web page: http://bit.ly/2NmtcRM

28 28 AALITTLE LITTLEBELOW BELOWTHE THEBELT BELT

ANZUP trial - testicular

P3BEP Status: Active & recruiting Location: Australia wide & Internationally Activated sites: 48 Patients recruited: 102 • Patients required: Stage 1 (150) Stage 2 (350)

The current standard practice for the treatment of germ cell tumours is the use of the chemotherapy combination called BEP, which consists of three chemotherapy agents – Bleomycin, Etoposide and Cisplatin – administered on a three-weekly cycle. BEP is given with a drug called pegylated G-CSF (or pegfilgrastim) that stimulates white blood cell production. The purpose of this study is to determine whether giving the same dose of BEP on a two-weekly schedule will be more effective and better tolerated than a three-weekly schedule. The two-weekly schedule is called “accelerated BEP” and the three-weekly schedule is called “standard BEP”. Up to 500 patients will be enrolled in the study in Australia, New Zealand and other countries. Currently we have 27 sites open in Australia and New Zealand, and 88 patients enrolled. We have also set up the trial in the US, in Ireland with the support of Cancer Trials Ireland and the Medical Research Council, Cambridge University, UK. This study is currently active and recruiting. Please speak with your doctor if this is of interest to you or someone you know. For more information, please go to the trials page on the ANZUP website: https://anzup.org.au/ aspx?page=testicularcancertrialdetails

ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC). This ANZUP investigator initiated study is being funded by Cancer Australia grant. Current locations for the P3BEP trial: NSW • Calvary Mater Newcastle • Chris O’Brien Lifehouse • Concord Repatriation General Hospital • Macquarie Cancer Clinical Trials • Nepean Hospital • Prince of Wales Hospital • Royal North Shore Hospital • SAN Clinical Trials Unit • The Tweed Hospital • Westmead Hospital QLD • Princess Alexandra Hospital • Queensland Children’s Hospital • Royal Brisbane & Women’s Hospital SA • Flinders Medical Centre • Royal Adelaide Hospital TAS • Royal Hobart Hospital VIC • Austin Health • Border Medical Oncology • Box Hill Hospital • Peter MacCallum Cancer Centre • Sunshine Hospital

WA • Fiona Stanley Hospital NEW ZEALAND • Auckland Hospital • Christchurch Hospital • Dunedin Hospital • Palmerston North Hospital • Starship Children’s Hospital UK • Addenbrooke’s Hospital • Royal Preston Hospital • Beatson West of Scotland Cancer Centre • Bristol University Hospital • Velindre Hospital • Cambridge University Hospital Paediatric • University Hospital Southhampton • Royal Marsden Hospital • St James Hospital - Leeds USA • Saint Mary’s Hospital, West Palm Beach • Sinai Hospital of Baltimore • Toledo Children’s Hospital • Washington University School of Medicine, St Louis • Dana-Faber Cancer Institute • Rady Children’s Hospital • Cincinnati Children’s Hospital • Arkansas Children’s Hospital • Joe DiMaggio Cancer Centre • Nemours Children’s Clinic • Augusta University Medical Centre • Vanderbilt University Medical Centre

AA LITTLE LITTLE BELOW BELOW THE THE BELT BELT 29 29

Spotlight on prostate cancer The prostate is a small gland about the size of a walnut. It is found only in men and forms part of the male reproductive system. It sits below the bladder, near nerves, blood vessels and muscles that control erections and bladder function. These muscles include the pelvic floor muscles, a hammock-like layer of muscles at the base of the pelvis.

19,000+ diagnoses

in Australia each year

63%

of cases diagnosed in those over 65 years

3,000+ deaths

in Australia each year

What is prostate cancer?

Prostate cancer symptoms

Prostate cancer develops when abnormal cells in the prostate gland grow more quickly than in a normal prostate, and in an uncontrolled manner. Although not always the case, prostate cancers grow more slowly than other cancer types.

The symptoms can include:

Prostate cancer is the most common cancer diagnosed in Australia and the third most common cause of cancer death. One in five men will be diagnosed with prostate cancer by the age of 85. It is more common in older men, with 63 per cent of cases diagnosed in those over 65 years of age. In 2019, it is estimated that 19,508 new cases of prostate cancer will be diagnosed in Australia. The five-year survival rate for men diagnosed with prostate cancer is 95 per cent. Nearly all patients who present with localised disease will live beyond five years. In 2019, it is estimated that there will be 3,306 deaths from prostate cancer in Australia.

• Frequent urination, particularly at night; • Pain on urination; • Blood in the urine; • A weak urine stream More widespread disease often spreads to the bones and gives pain or unexplained weight loss and fatigue.

Causes of prostate cancer Your risk of prostate cancer can be increased by some of the factors below: • Age, increasing greatly if you are aged over 50 years; • Family history of prostate, breast or ovarian cancer; • A diet high in fats and low in fresh fruit and vegetables; • Men of African descent are at higher risk than men of European or Asian descent; • High testosterone levels

Information derived from Cancer Australia; https://prostate-cancer.canceraustralia.gov.au/statistics

30 A LITTLE BELOW THE BELT

Prostate Cancer Story

Jasmin Yee & Haryana Dhillon Talk Urology At this year’s ANZUP Annual Scientific Meeting in July, we were lucky enough to have the Talking Urology Podcast team on site at the Hilton, conducting fascinating interviews and featuring some of the #ANZUP19 key speakers. ANZUP’s Quality of Life and Supportive Care subcommittee chair, Associate Professor Haryana Dhillon, spoke with Dr Jasmin Yee on her work as a postdoc research fellow. Jasmin’s research focuses on exercise as a side effect management intervention for those with prostate cancer. Read our short excerpt of this podcast below. Haryana: So, you’ve recently started working as a postdoc research fellow, so can you tell us a little bit about your new role? Jasmin: Yes. So, we know that with prostate cancer that there’s a lot of unmet needs when it comes to supportive care and particularly side effect management. So, part of my new role is working in one of our Sydney metropolitan centres to try and identify what some of those issues are and to think about how we can implement some interventions to then address some of those holes. With a background in exercise science, I anticipate that many of the projects may be based around physical activity and exercise. Haryana: Please tell us a little bit about how you think that the work you did in your PhD in women with metastatic breast cancer and exercise might transfer or translate into supporting men with prostate cancer? Jasmin: So, we know with exercise that the benefits are really well established around physical function and some of the psychosocial outcomes as well. But most of that evidence has been generated in very early stage cancers, so there’s a big paucity in metastatic disease. So, my PhD focused on the role of exercise and physical activity for women living with metastatic breast cancer. So, we had many of our participants who did have bone metastases present. What we found from that work was that by implementing a homebased resistance training and aerobic training program, that the women with metastatic breast cancer were able to safely complete the program. We also saw some trends in terms of improving some symptoms such as fatigue and also physical function. So, I think that work provides a really strong foundation for prescribing exercise in men living with metastatic prostate cancer. Given that the most common place of spread is to the bones.

Haryana: It’s fantastic. It’s really interesting to see the similarities between different types of cancer sometimes and what we can learn across the fields. I’d be really interested to hear starting in a postdoctoral role, what’s that meant for your career, because you’re an early career researcher, how do you think that’s going to change what might happen over the next few years? Jasmin: I think starting in this postdoctoral position has been really wonderful and will accelerate my career. For the last four years, I’ve been in a teaching position, so unfortunately the teaching has minimised the amount of time I can invest in research. So the biggest transition into this position is now being able to focus full time on research and having less pull in different directions, I suppose, with respect to teaching and other administrative responsibilities as well. Haryana: So, much more of that protected research time; that means you can focus on those questions. I think, one of the areas that we’ve been talking about doing some work in, is how you actually implement some of the work or the findings from other research studies. Have you thought very much about the particular challenges of implementation work? Jasmin: I think when we come to talk about exercise, that those challenges are really clear. We now have evidence that exercise is beneficial. We have COSA statements that emphasize that exercise should be imbedded as standard care, but we don’t yet see that happening in our cancer centre. So, I think there’s a large component there around education for the clinicians who are dealing with or treating these cancer patients. And then, also of course the resources for who’s going to be able to develop these programs, is there even physical space let alone funding for an exercise physiologist or other specialists to deliver programs? It’s certainly going to be about being a bit innovative, I think, and thinking a little bit outside the box about how you can still deliver programs but in a way, that’s not going to be too resource-intensive necessarily. Haryana: Excellent. It sounds like we’ve got lots of work ahead of us. Jasmin: We have our work cut out for us that’s for sure. Hear the full podcast, and many more from the 2019 Annual Scientific Meeting on our website: http://bit.ly/TUpodcast2019

AA LITTLE LITTLE BELOW BELOW THE THE BELT BELT 31 31

Upcoming trial - prostate

Prostate clinical trials ANZUP are currently running a number of prostate cancer trials and have others about to begin. For more details and information about these trials, go to the ANZUP prostate cancer trials web page: http://bit.ly/2PUpYq8

Upcoming prostate clinical trials ENZA-p

DASL-HiCaP

#UpFrontPSMA

ENZA-p is an ANZUP-led randomised phase II trial using PSMA as a therapeutic agent (Lutetium -PSMA) and prognostic indicator (PSMA-PET) in men with metastatic castrate-resistant prostate cancer treated with enzalutamide (ANZUP 1901). This study is being led by A/Prof Louise Emmett from St Vincent’s Hospital in Sydney. The study aims to recruit 160 patients, across 12 sites – with the view to open the study in early 2020.

We thanks and acknolwedge Bayer for providing funding and product to support the DASL-HiCaP trial.

UpFrontPSMA is an ANZUP-led Randomised Phase 2 Study of Sequential 177Lu-PSMA617 and docetaxel versus docetaxel in metastatic hormone-naïve prostate cancer. This study is being led by Prof. Michael Hofman and the study aims to recruit 140 patients across 11 sites.

DASL-HiCaP is also an ANZUPled randomised phase 3 trial of adding darolutamide to androgen deprivation therapy and definitive or salvage radiation in high risk, clinically localized prostate cancer. Study Co-Chairs are Prof Chris Sweeney and A/Prof Tamim Niazi and the study aim to recruit 1,100 patients from close to 100 sites across Australia, New Zealand, US, Canada, UK and Ireland. We are planning to recruit the first patient to DASL-HiCaP by early 2020.

Both ENZAp and #UpFrontPSMA are funded through the Prostate Cancer Research Alliance (PCRA) – a program jointly funded by the Australian Government and the Movember Foundation (Movember).

32 32 AALITTLE LITTLEBELOW BELOWTHE THEBELT BELT

ANZUP trial - prostate

Current ANZUP trials

Pain Free TRUS B Status: Active & recruiting Location: Australia wide & New Zealand Activated sites: 7+ climbing Patients recruited: 420 • Patients required: 420

A prostate biopsy involves taking small pieces of the prostate through a needle so that it can be looked at through a microscope. A Trans Rectal Ultrasound (TRUS) guided biopsy is the usual method and involves insertion of a thin needle through the wall of the rectum into the prostate using the guidance of an ultrasound probe. An injection of a local anaesthetic (lignocaine) around the prostate is the standard method of reducing the discomfort of a prostate biopsy. Methoxyflurane (Penthrox®) is a drug given with a simple inhaler and is widely used by first-aid services to reduce pain. This randomised trial will determine if the discomfort of prostate biopsies can be reduced by giving men inhaled methoxyflurane in addition to their standard injections of local anaesthetic. This is a phase 3 double-blind placebo-controlled randomised trial of methoxyflurane with peri prostatic local anaesthesia to reduce the discomfort of trans rectal ultrasound-guided prostate biopsy. This study will include 420 men. Currently we have active sites across Australia and New Zealand and have completed recruitment of the planned 420 participants.

ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHRMC CTC). For more information, please refer to http://anzup.org. au/content.aspx?page=trials-prostate This ANZUP investigator initiated study is being funded by Cancer Australia. We acknowledge MDI for providing the study drug. Current locations for the Pain Free TRUS B trial: NSW • Westmead Hospital VIC • The Alfred Hospital • Casey Hospital WA • Fiona Stanley Hospital New Zealand • Canterbury Urology Research Trust • Cardinal Points Research • Tauranga Urology Research

A LITTLE BELOW THE BELT 33

Co-badged trial - prostate

Current Co-Badged Trials

NINJA Status: Active & recruiting Location: NSW Activated sites: 3+ climbing Patients recruited: 26 • Patients required: 474

The NINJA clinical trial aims to compare two emerging schedules of radiotherapy in the treatment of intermediate or high risk prostate cancer. Participants will be randomly assigned to one of two radiotherapy schedules as part of this study. In schedule 1 (called Stereotactic Body Radiotherapy) participants will receive 5 radiotherapy treatments over 2 weeks, and in schedule 2, (called Virtual High Dose Rate Boost), participants will receive Stereotactic Body Radiotherapy delivered in 2 treatments over 1 week followed by 12 treatments of conventional external beam radiotherapy over 2 and a half weeks. It is hoped this research will potentially improve the accuracy and quality of radiotherapy treatment in prostate cancer.

This study is being led by the TransTasman Radiation Oncology Group and co-badged with ANZUP. The study is being funded by Cancer Australia, and we acknowledge MDI for providing the study drug. Current locations for the NINJA trial: NSW • Calvary Mater Newcastle • Campbelltown Hospital • Liverpool Hospital

This study will include 474 men. Currently we have active sites across Australia and New Zealand with 419 patients enrolled. This trial is open and recruiting. If you are interested in participating in the trial, please refer to http://anzup.org. au/content.aspx?page=trials-prostate.

34 34 AALITTLE LITTLEBELOW BELOWTHE THEBELT BELT

A LITTLE BELOW THE BELT 34

Spotlight on kidney cancer The kidneys are two bean-shaped organs, each about the size of a fist. They are deep inside your abdomen, positioned near the middle of your back, on either side of the spine. The main role of the kidneys is to filter and clean the blood.

3,000+ diagnoses

in Australia each year

2.6%

of all newly diagnosed cancers in Australia

men

are almost twice as likely to be diagnosed

What is kidney cancer?

If you are experiencing some of these symptoms, please see your doctor.

Kidney cancer starts in the cells of the kidney. About 90% of kidney cancers are renal cell carcinomas (RCC). Usually only one kidney is affected but, in rare cases, the cancer may develop in both.

Causes of kidney cancer

Each year more than 3,000 Australians are diagnosed with kidney cancer. Kidney cancer is rare in people under 40 but risk does increase with age. Also, men are almost twice as likely to be diagnosed with kidney cancer as women.

• O besity – Excess body fat may alter certain hormones that can lead to kidney cancer.

In 2019, there are estimated to have been 3,814 new cases of kidney cancer diagnosed (2,539 males and 1,275 females). In 2019, there are estimated to have been 1,034 deaths from kidney cancer (682 males, 351 females). The five-year survival rate for Australians diagnosed with kidney cancer is 77 per cent although most people with kidney cancer localised only to the kidney can be cured.

Kidney cancer symptoms Most people with kidney cancer have no symptoms. Many are diagnosed with the disease when they see a doctor for a different reason. Symptoms may include: • blood in the urine (haematuria); • p ain or a dull ache in the side or lower back that is not due to an injury; • a lump in the abdomen; • rapid, unexplained weight loss; • constant tiredness;

The causes of kidney cancer are not known, but factors that put some people at higher risk are:

• S moking – Up to one-third of all kidney cancers are thought to be related to smoking. People who smoke have almost twice the risk of developing kidney cancer as non-smokers. • H igh blood pressure – Whether it is caused by another medical condition or due to being overweight, high blood pressure increases the risk of kidney cancer. • K idney failure – People with end-stage kidney disease have an increased risk of developing kidney cancer. • F amily history – People who have family members with kidney cancer, especially a sibling, are at a greater risk. • I nherited conditions – About 3–5% of kidney cancers occur in people with particular inherited syndromes, such as von Hippel-Lindau disease, Birt-Hogg-Dubé syndrome, and hereditary papillary RCC. • E xposure to toxic substances at work – After regular exposure to certain chemicals, such as arsenic, cadmium or some metal degreasers, the risk of kidney cancer may be higher.

• fever not caused by a cold or flu.

Information on Kidney Cancer is derived from Cancer Australia https://kidney-cancer.canceraustralia.gov.au/statistics

AA LITTLE LITTLE BELOW BELOW THE THE BELT BELT 35 35

ANZUP trial - kidney

Current ANZUP trials ANZUP are currently running a number of kidney cancer trials. For more details information about these trials, go to the ANZUP kidney cancer trials web page: http://bit.ly/ANZUPkidney

KEYPAD Status: Active & recruiting Location: Australia wide Activated sites: 13+ climbing

The most common kind of advanced kidney cancer is called clear cell kidney cancer. This trial aims to improve survival rates for people with this cancer.

Patients recruited: 29 • Patients required: 70

Renal cell carcinoma (RCC) is the 9th most common cancer in Australia and the 10th most common cancer in Western populations. Approximately 75% of kidney cancers are clear-cell renal cell carcinomas (ccRCC). At the moment up to half of patients with clear cell renal carcinoma will die of their cancer. Immune therapies have been shown to be effective in about a quarter of patients with clear cell renal cell carcinoma after the standard treatment (sunitinib) has failed. This study will test if a drug frequently used to treat osteoporosis, (thinning of the bones), can team up with immune therapy to improve survival and increase the chance of the cancer shrinking for people with clear cell kidney cancer. In the trial, people with advanced clear cell kidney cancer will be offered treatment with two antibodies (a type of protein). This trial will investigate if these drugs taken together can increase the ability of the body’s immune system to attack kidney cancer cells. It is hoped that by combining pembrolizumab with denosumab, (another antibody which is used to help reduce bone loss in osteoporosis and cancer patients), will stimulate the immune system, so that the immune therapy will work better in the tumours.

The study is a collaboration between ANZUP and the NHMRC Clinical Trials Centre. We thanks and acknolwedge Amgen and MSD for providing funding and product to support KEYPAD. We are currently running the KEYPAD trial at the following locations: NSW • Calvary Mater Newcastle • Concord Repatriation General Hospital • Northern Cancer Institute • St George Hospital QLD • ICON Cancer Care • Royal Brisbane & Women’s Hospital • Sunshine Coast University Hospital SA • Flinders Medical Centre VIC • Box Hill Hospital • Monash Health Clayton • Peter MacCallum Cancer Centre • Ballarat Oncology and Haematology Services WA • Fiona Stanley Hospital

36 A LITTLE BELOW THE BELT

ANZUP trial - kidney

UNICAB Status: Active & recruiting Location: Australia wide Activated sites: 13+ climbing Patients recruited: 1 • Patients required: 48

This study aims to find how safe, tolerable and effective a new treatment called cabozantinib is for non-clear cell kidney cancer. All patients will take cabozantinib orally every day, until the medication is no longer effective. There is no placebo (inactive treatment), which means that everyone who takes part in the trial will receive the active cabozantinib drug. Cabozantinib is an anti-cancer drug that works by blocking cancer cell growth. Cabozantinib has previously been used in the treatment of many cancers, including clear cell kidney cancer and thyroid cancer. However, it has not been tested in people with non-clear cell kidney cancer.

We are currently running the UNICAB trial at the following locations: NSW • Border Medical Oncology • Calvary Mater, Newcastle • Campbelltown Hospital • Macquarie University • Northern Cancer Institute • St. George Hospital QLD • Royal Brisbane & Women’s Hospital SA • Adelaide Cancer Centre • Flinders Medical Centre VIC • Monash Medical Centre, Clayton • Box Hill Hospital, Eastern Health We thank and acknowledge Ipsen for providing the study drug and funding to support the UNICAB trial.

Cancer trials can be undertaken in different settings. Depending on the trial, it may occur in a hospital, a clinic or the patient’s home.

A LITTLE BELOW THE BELT 37

ANZUP trial - kidney

UNISoN Status: Active & recruiting Location: Australia wide Activated sites: 19+ climbing PART 1: Patients recruited: 85 Patients required: 85

recruitment closed

PART 2: Patients recruited: 82 Patients required: 48

In this clinical trial ANZUP will test whether new immune treatments can help people with rare kidney cancer (‘non-clear cell’ cancer).

Non-clear cell represents approximately 25% of people with kidney cancer; and because it is rare there are no treatments currently reimbursed in Australia. The UNISoN trial will test immune treatments in two different ways; firstly the trial will investigate how well one immune treatment (nivolumab) works alone. If this is unhelpful by itself, then people can continue taking nivolumab but also add in a 2nd immune treatment (ipilimumab). The trial will also discover how many people will benefit from one drug alone, and by doing detailed laboratory testing of people’s cancer samples, hope to also learn who will only benefit from taking both treatments together. Nivolumab and ipilimumab have been used alone or together in many cancers, so the side-effects are well known and should be manageable. Immune treatments help some people with cancer, especially those with melanoma, common (clear cell) kidney cancer, lung and bladder cancer. Unfortunately they are much less effective in other cancers (like pancreas, prostate and brain cancers). Nivolumab and ipilimumab have not been tested in people with non-clear cell kidney cancers, so ANZUP is delighted to ask this question, and hopes to help people with this rare disease.

38 A LITTLE BELOW THE BELT

We thank and acknowledge BMS for providing the study drug and funding to conduct the UNISoN trial. We are currently running the UNISoN trial at the following locations: NSW • Border Medical Oncology • Calvary Mater Newcastle • Campbelltown Hospital • Chris O’Brien Lifehouse • Northern Cancer Institute • Port Macquarie Base Hospital • Prince of Wales Hospital • St George Hospital • St Vincent’s Hospital • Tamworth Hospital • Westmead Hospital QLD • Royal Brisbane and Women’s Hospital • Sunshine Coast University Hospital SA • Adelaide Hospital/ Ashford Cancer Centre Research • Flinders Medical Centre VIC • Ballarat Oncology & Haematology Service • Box Hill Hospital • Monash Health – Clayton WA • Fiona Stanley Hospital

Co-badged trial - kidney

Current Co-Badged Trials A co-badged trial is when two (or more) research groups are working together to run a clinical trial. ANZUP is currently running the following trial in collaboration with the Trans-Tasman Radiation Oncology Group (TROG).

FASTRACK II Status: Active & recruiting Location: Australia & New Zealand Activated sites: 8+ climbing Patients recruited: 51 Patients required: 70

Surgery is the standard treatment for primary kidney cancer. However, in some cases, surgery is either not possible or other health problems make surgery high risk. This study involves a relatively new, highly precise multidirectional radiotherapy technique called Stereotactic Ablative Body Radiotherapy (SABR) which will be applied to all participants. The aim of the study is to test the ability of the technique to control cancer within the kidney for those people for whom surgery is not an option, and to examine the side effects of the treatment, including how it may affect your kidney’s function. This study is led by TROG and Co-baged by ANZUP Cancer Trials Group.

The FASTRACK II trial is currently running at the following locations: NSW • Calvary Mater Newcastle • Liverpool Hospital • Royal North Shore Hospital QLD • Princess Alexandra Hospital • Royal Brisbane and Women’s Hospital SA • Royal Adelaide Hospital VIC • Peter MacCallum Cancer Centre • The Alfred (William Buckland Radiation Centre)

Ask your doctor if they are aware of any trials that could be available to you

A LITTLE BELOW THE BELT 39

Spotlight on bladder and urothelial cancer The bladder is an organ is part of the urinary system which works with the kidneys to rid the body of waste products from the blood. It is located in the pelvic area, just below the kidneys and right behind the pelvic bone. It is typically the size of a large grapefruit but can stretch much larger when needed. Urothelial cells line the inside of the bladder.

3,160+

Significantly more common in

men

diagnoses

in Australia each year

What is bladder cancer?

Bladder cancer symptoms

Bladder and urothelial cancers occur when abnormal cells in the bladder growing and dividing in an uncontrolled manner.

The most common symptom of bladder cancer is blood in the urine (haematuria), which usually occurs suddenly and is generally not painful.

Bladder cancer takes different forms:

Other less common symptoms include:

• urothelial carcinoma, formally known as transitional cell carcinoma, is the most common form of bladder cancer (80-90%) and starts in the urothelial cells in the bladder wall’s innermost layer

• Problems emptying the bladder;

• squamous cell carcinoma begins in the thin, flat cells that line the bladder

• Back pain or lower abdominal pain.

• adenocarcinoma is a rare form which starts in mucus-producing cells in the bladder.

Causes of bladder and urothelial cancer

In 2019, there is estimated to be 3,168 new cases of bladder cancer diagnosed in Australia (2,447 males and 721 females).

• A burning feeling when passing urine; • Need to pass urine often;

Some factors that can increase your risk of bladder cancer include:

In 2019, there are estimated to be 1,209 deaths from bladder cancer. The chances of surviving bladder cancer for five years is 54%.

• smoking; • diabetes; • family history;

Bladder, urothelial and penile cancers are often looked at together as they are all part of the urinary tract system. Read more about penile cancer on page 24.

Bladder cancer is the fourth most common cancer in Australian men

• workplace exposure to certain chemicals used in dyeing in the textile, petrochemical and rubber industries; • use of the chemotherapy drug cyclophosphamide; • chronic inflammation of the bladder.

Common in

over 60’s

Information on bladder and urothelial cancer is derived from Cancer Australia https://bladder-cancer.canceraustralia.gov.au/statistics and statistics from Australian Institute of Health and Welfare https://www.aihw.gov.au/getmedia/8c9fcf52-0055-41a0-96d9-f81b0feb98cf/aihw-can-123.pdf.aspx?inline=true

40 A LITTLE BELOW THE BELT

ANZUP trial bladder

Current ANZUP trials ANZUP are currently running a number of bladder cancer trials. For more details information about these trials, go to the ANZUP bladder cancer trials web page: http://bit.ly/ANZUPbladder

BCG+MM Status: Active & recruiting Location: Australia Activated sites: 13+ climbing Patients recruited: 228 Patients required: Stage one: 130 / Stage two: 370

Non-muscle invasive bladder cancer is common and causes substantial suffering. It requires removal or irradiation of the bladder within five years in more than 30% of people with high-risk tumours, despite best current treatment. Recent preliminary studies show promising results from adding mitomycin (MM), a chemotherapy drug, to current treatment with BCG (Bacillus Calmette-Guérin, a strain of modified bacteria which stimulates an immune response to early cancer cells). This randomised trial will determine the effects of adding mitomycin on cure rates, survival, side effects and quality of life. This could potentially provide a simple and costeffective treatment for patients who suffer from this cancer. This study is currently active and recruiting. Please speak with your doctor if this is of interest to you or someone you know. ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC).

This ANZUP investigator-initiated study is being funded by Cancer Australia and the National Health and Medical Research Council. We acknowledge Omegapharm and Merck Sharp & Dohme for providing the study drugs. Current site locations for the BCG + MM trial are: NSW • Concord Repatriation General Hospital • Northern Cancer Institute • Southside Cancer Care Centre • Sydney Adventist Hospital Clinical Trials Unit • The Tweed Hospital • Westmead Hospital VIC • The Alfred Hospital • Austin Hospital • Epworth HealthCare (Richmond) • Footscray Hospital • Frankston Hospital • Royal Melbourne Hospital WA • Fiona Stanley Hospital

A LITTLE BELOW THE BELT 41

ANZUP trial - bladder

PCR MIB Status: Active & recruiting Location: Australia wide Activated sites: 6+ climbing Patients recruited: 17 • Patients required: 30

Opened in mid-2016, this trial is aimed at managing bladder cancer that has spread into the wall of the bladder. A combination of chemotherapy and radiotherapy is the current standard treatment. This study aims to assess if it is safe and effective to add an additional new drug called pembrolizumab to the standard therapy of chemotherapy and radiation therapy. Pembrolizumab is a new treatment that “takes the brakes off” the immune system, allowing it to attack cancers more effectively. Studies of pembrolizumab in widespread bladder cancer have shown benefit, with cancer shrinkage observed in about two thirds of people, and in some cases long periods of disease control. At present, pembrolizumab, is approved for use in Australia for the treatment of advanced melanoma in adults. This study is currently active and recruiting. Please speak with your doctor if this is of interest to you or someone you know. We thank and acknowledge MSD for their funding and product support.

Current site locations for the PCR MIB ANZUP clinical trial: NSW • Chris O’Brien Lifehouse • Liverpool Hospital • Prince of Wales Hospital • Royal North Shore Hospital VIC • Austin Hospital WA • Sir Charles Gairdner Hospital

Participation in cancer trials is voluntary & patients can withdraw from a study at any time

If a clinical trial proves that a treatment is more effective than existing options, it may become the new standard of care for patients in the future.

42 A LITTLE BELOW THE BELT

Co-badged trial - bladder

Current Co-Badged Trials NMIBC-SI Evaluation Status: Active & recruiting Location: Australia, New Zealand and USA Activated sites: 14+ climbing Patients recruited: 97 • Patients required: 450

Non-muscle invasive bladder cancer (NMIBC) makes up approximately 70-80% of all bladder cancer diagnoses. Treatment is generally intended to reduce the risk of the bladder cancer recurring or progressing to muscle invasive disease. Treatment involves endoscopic resection to the bladder tumours followed by potential intravesical chemotherapy or immunotherapy. Although treatments can significantly reduce the risk of recurrence and progression, there are both benefits and harms that are likely to vary between treatment options. However, little is known about the impact of these treatments on patients’ quality of life.

This study is currently active and recruiting. Please speak with your doctor if this is of interest to you or someone you know.

This project follows on from Phase I, which involved qualitative research to develop a draft Non-Muscle Invasive Bladder Cancer Symptom Index (NMIBC-SI). The aim of the current project is to evaluate the psychometric properties of the NMIBC-SI. This will be conducted across two field tests:

QLD • Mater Hospital Brisbane

•F ield Test 1 is a cross-sectional study design asking participants to complete the draft NMIBC-SI questionnaire either on paper or electronically. The purpose of Field Test 1 is to produce a shorter version of the NMIBC-SI by eliminating items with poor psychometric properties. •F ield test 2 uses a prospective longitudinal study design to evaluate the clinical validity of the final version of the NMIBC-SI. Participants will be asked to complete the NMIBC-SI along with comparative questionnaires at different time-points during their treatment. The purpose of Field Test 2 is to assess the reliability, validity and responsiveness of the final version of the NMIBC-SI to ensure it is fit for purpose in clinical research.

The NMIBC-SI trial is currently being run at the following sites:: NSW • Concord Hospital • Royal North Shore Hospital • Westmead Hospital • Westmead Specialist Centre

A co-badged trial is when two (or more) research groups are working together to run a clinical trial.

VIC • Austin Hospital • Monash Medical Centre - Clayton • Royal Melbourne Hospital WA • Fiona Stanley Hospital New Zealand • Canterbury Urology Research Trust • Tauranga Urology Research Ltd USA • Mayo Clinic • University of Minnesota Hospital • University of Kansas

ANZUP is currently running this trial in collaboration with Cancer Australia and Cancer Council NSW. This study is being sponsored by the University of Sydney

A LITTLE BELOW THE BELT 43

ANZUP trials in follow up

Trials in follow up Once a clinical trial is finished, researchers scrutinise all the information collected during the course of the study. Reviewing all the data allows researchers to decide whether the results mean the new intervention should continue to the next phase of clinical trial, or, when applicable, seek approval for broader use by the appropriate authorities. Once a new intervention has been proven to be effective and safe, it may become part of standard treatment for the condition or disease. Review and analysis of the information can take an extended period of time. So there may be a delay before the results of a clinical trial are known. This is definitely the case with larger trials that can involve thousands of people from many hospitals both in Australia and overseas. In large multi-centre trials the examination of the data and outcomes may take place over several years. If you have taken part in a trial and specified you wish to know the overall results of the trial, the researchers should make them available to you directly. Usually results of all completed studies will also be made available in papers or reports published in scientific journals. ANZUP now has six trials in follow-up:

ENZARAD ENZARAD is a randomised phase 3 trial of enzalutamide in androgen deprivation therapy with radiation therapy for high risk, clinically localised, prostate cancer. Enzalutamide is a new hormone treatment taken as tablets. Previous trials have proven that enzalutamide improves survival and quality of life in men with prostate cancer that has stopped responding to standard hormone treatments and chemotherapy. This large, international randomised trial will determine if treatment with enzalutamide can improve survival and quality of life in men starting radiation and hormone therapy for prostate cancer that does not seem to have spread beyond the prostate. The trial has been led from Australia by ANZUP in collaboration with the NHMRC Clinical Trials Centre. The trial accrued 802 men from 69 sites across Australia, New Zealand, Canada, the US, Ireland, and the UK. Recruitment closed on 30th June 2018.

44 A LITTLE BELOW THE BELT

ENZAMET ENZAMET is a randomised phase 3 trial of enzalutamide in first line androgen deprivation therapy for metastatic prostate cancer. In June 2019 ANZUP reported that the ENZAMET clinical trial showed improved survival at the first interim analysis. Men with metastatic hormone sensitive prostate cancer received enzalutamide or nonsteroidal anti-androgen therapy (NSAA: bicalutamide, nilutamide, or flutamide) in addition to standard of care therapy (androgen deprivation therapy, ADT), with or without docetaxel chemotherapy. The ENZAMET trial interim analysis showed a 33% improvement in overall survival and a 60% improvement in progression-free survival, for men who received enzalutamide. This translated into 80% chance of survival at 3 years with enzalutamide versus 72% with NSAA. This trial has been led from Australia by ANZUP in collaboration with the NHMRC Clinical Trials Centre. A total of 1,125 participants from 83 global sites from Australia, New Zealand, Canada, the US, Ireland, and the UK took part in this trial. We thank and acknowledge Astellas for their funding and product support of both ENZAMET and ENZARAD.

BL12 This study was designed to look at whether NabPaclitaxel improves survival and is less toxic, with improved quality of life, compared with Paclitaxel in people with advanced or metastatic urothelial cancer, in the setting where the cancer has grown or come back during or within 12 months of completion of platinum based chemotherapy. Urothelial transitional cell cancer (uTCC) is a type of cancer that typically starts in the cells that line the inside of the urinary system. People with â&#x20AC;&#x153;advanced or metastatic urothelial cancerâ&#x20AC;? have cancer which has spread beyond the region of the urinary system, typically to lymph nodes, the wall of abdomen or pelvis, bones or other organs. Chemotherapy is commonly used in this situation. Chemotherapy drugs of a type called taxanes have commonly been used as a second

ANZUP trials in follow up

Trials in follow up line treatment. This family of chemotherapy drugs include Nab-Paclitaxel and Paclitaxel. Recruitment to this study ceased on the 7th April 2017 and sites are being closed out. As part of this process, sites are required to submit documents and begin the process of archiving all trial records for 15 years from the end of the trial. Once it becomes available the final trial publication will be submitted to the Human Research Ethics Committee.

e-TC 2.0 A team of cancer survivors, researchers and clinicians developed the e-TC website, which provides evidence-based information and psychological strategies for coping with the challenges associated with testicular cancer. This study aims to evaluate the use and satisfaction with the e-TC website in men who have finished treatment for testicular cancer and are feeling stressed, down or worried about their cancer coming back. Men were recruited through clinicians at participating centres and online via search engine and social media advertising. The study has now closed to recruitment with 40 participants having taken part.

proPSMA Prostate cancer is the most commonly diagnosed cancer in Australian men. If detected early, when disease has not spread, there is a high chance of cure. Relapse, however, is not uncommon despite careful selection of patients prior to surgery or radiotherapy. This, in part, reflects a failure to detect disease spread at baseline due to limited accuracy of current scanning techniques. More accurate scanning may improve outcomes by redirecting patients with disease spread from futile local treatments to more appropriate management. This clinical trial will investigate a new type of scan which provides whole body images of prostate cancer spread. Early experience suggests that this new technology, called PSMA PET/CT (prostate specific membrane antigen positron emission tomography/ computed tomography), is superior to current scanning techniques. PSMA PET/CT has capacity for wide availability at relatively low cost. Performing a single

better test rather than several less accurate scans will also be cheaper, improve patient experience and expose patients to lower amounts of radiation. This is a randomised study at multiple centres around Australia comparing PSMA-PET/CT to conventional imaging. If the initial work-up does not demonstrate tumour spread, patients will cross-over to the other imaging arm. We hope to prove that PSMA-PET/ CT has superior diagnostic performance, should be used as a first-line test for staging prior to surgery or radiotherapy and will result in significant changes to patient management. Results of this trial will be used to support funding of this new technology in Australia and internationally. The trial has now closed to recruitment and enrolled 300 participants in Australia.

TheraP Lutetium-177 PSMA radionuclide therapy (Lu-PSMA) is a new treatment for advanced prostate cancer. Lu-PSMA is a radioactive molecule that specifically attaches to cells with high amounts of PSMA on the surface of the cells. This allows the radioactivity to be delivered mainly to the prostate cancer cells wherever they have spread, while sparing most normal tissues. Previous small studies of Lu-PSMA showed promising activity in patients with advanced prostate cancer.

This randomised study will compare Lu-PSMA with a type of chemotherapy called cabazitaxel, which is the standard treatment for advanced prostate cancer when other treatments have stopped working. Half the participants will receive Lu-PSMA and half will receive cabazitaxel. This study will provide further information about the risks and benefits of Lu-PSMA compared with cabazitaxel in men with prostate cancer. We plan to enrol 200 participants in the study in Australia. TheraP is a partnership between ANZUP Cancer Trials Group and the Prostate Cancer Foundation of Australia (PCFA) with support from the Australian Nuclear Science and Technology Organisation (ANSTO), Endocyte, Itâ&#x20AC;&#x2122;s a Bloke Thing, Movember and CAN4CANCER.

A LITTLE BELOW THE BELT 45

Fundraise for ANZUP

If you are interested in holding an event to support ANZUP or are considering joining an event such as the City 2 Surf, Run Melbourne, Sydney Marathon, Walk to Work Day or any other community event, please contact us at anzup@anzup.org.au or call 02 9562 5042 and we will help you set up the fundraising pages.

100% of every donation made to ANZUP goes towards clinical trial research to improve outcomes for bladder, kidney, testicular, penile and prostate cancers.

ANZUP is a not for profit cancer research charity and is registered on the Australian Charities and Not-for-profits Commission (ACNC) Register and the Charities Services Register in New Zealand. We have obtained Deductible Gift Recipient (DGR) status in all states and territories in Australia and donee status in New Zealand. This means donors can claim income tax deductions for gifts to ANZUP (of $2 or more in Australia and $5 or more in New Zealand) in their income tax returns. 46 AALITTLE LITTLEBELOW BELOWTHE THEBELT BELT

FIGHT FIGHTCANCER CANCER BELOW BELOWTHE THEBELT. BELT.

Ride or support and help fight prostate, penile, testicular, bladder and kidney cancer. Melbourne Pedalthon Sunday 15 March 2020 Sandown, Springvale, VIC

Sydney Pedalthon Tuesday 15 September 2020 Sydney Motorsport Park, Eastern Creek, NSW

For more information go to www.belowthebelt.org.au

A LITTLE BELOW THE BELT 47

ANZUP’s Community Champions Morning tea making a difference On Thursday 8 August, close to 100 Macquarie Bank employees attended a Charity Morning Tea organised by Giving@Macquarie to raise funds for ANZUP. ANZUP member A/Prof Louise Emmett gave the attendees a short presentation on ANZUP and what we do, and how clinical trials work. The group was then invited to a morning tea and to make a donation to ANZUP. ANZUP tees, hats and water bottles were also available for purchase and proved very popular amongst the Macquarie staff!

Inaugural Trivia Night a great success! On a windy chilly evening in late August, ANZUP held it’s first trivia night and raffle at the Lord Dudley Hotel, Sydney, with 65 people attending. The night was a huge success – raising over $5,300 for our Below the Belt Research Fund and a great night was had by all, with the ‘Trials and Trivulations’ team the trivia champions for the evening! We are grateful to the Lord Dudley for their generous support of the venue, trivia master and catering. Thank you also to all our prize sponsors – Lisa McGuigan wine, Lion, Flight Centre, Gin Lane and Baby Coffee Co. Want to host your own ANZUP trivia night? Contact us today! anzup@anzup.org.au We support events across Australia and New Zealand.

It was great to see so many people interested in ANZUP and wanting to learn more about what we do. The morning tea raised over $5,800 including dollar for dollar matching from Macquarie. A great effort all round! Thanks again to the Macquarie Bank for making this great event possible! Contact us if you would like to host your own ANZUP morning tea at your workplace.

Making a difference through fundraising.

Revving up the donations! Sydney Pedalthon silver sponsor, Northshore Mitsubishi in Ryde, has generously helped rev up the fundraising for the Below the Belt Research Fund in a unique way. Dealer Principal, Warren Smith, launched his donation drive at the Pedalthon by giving all attendees a $500 voucher for Northshore Mitsubishi with a special offer – all those who hand in the voucher when purchasing their new car with him, $500 will be donated to ANZUP. New car and a feel good moment, what’s not to love? Read more about how the Northshore Mitsubishi team did at the Pedalthon on page 58.

48 A LITTLE BELOW THE BELT

Paying it forward Excitingly, this year the Flight Centre Travel Group added ANZUP to their Workplace Giving program. Flight Centre staff can now donate to ANZUP via their pay and the Flight Centre Foundation will match their donation dollar-fordollar. This commenced as multiple staff had approached the Foundation expressing their interest in donating to ANZUP – what great news! Thank you to all the team at Flight Centre for your generous support.

The Lord Roberts Hotel Fundraiser On 7 September 2019, for the second year in a row, the Lord Roberts Hotel in Sydney supported ANZUP with a ‘Drinks for a Cause’ fundraiser. $1 from each drink purchased on the day was donated to ANZUP’s Below the Belt Research Fund, raising an impressive $1,235! Thank you to Sue Cameron and Jennifer Kliendienst for your continuous support.

Morton’s Winning Social Media What a difference socials make! Morton Real Estate in Waterloo sponsored and participated in the 2019 Sydney Below the Belt Pedalthon, raising an incredible $7,600! The secret to their success? Engaging their colleagues, clients and partners with colourful, catchy and regular posts on their Facebook and Instagram accounts. Read more about Morton’s involvement in the Pedalthon on page 56. Inspired? Head to www.belowthebelt.org.au/resources for tips, tricks and resources for your ANZUP fundraising online.

Fundraising Heroes – Bev & John Purvey Special thank you to Bev and John Purvey for choosing ANZUP as their charity of choice for their 70th Birthday Party celebration. In lieu of gifts, it was suggested that guests consider a donation to bladder cancer research conducted by ANZUP. What a collective gift! Over $10,500 was kindly donated. Bev was diagnosed with bladder cancer in 2018 and is now recovering from her latest treatment. It is her mission to share her experience and inform people about the signs and symptoms of this rare cancer and is happy to tell her story in the future to help raise awareness and even more funds for ANZUP. The party, held at The Pullman on the Park, Melbourne was a wonderful celebration of their birthday milestone, with over 100 guests including her specialist and ANZUP Member Prof Shomik Sengupta and ANZUP CEO Margaret McJannett. Entertainment for the night was the fabulous Kylie Minogue show. Fun was had by all while supporting a great cause.

A LITTLE BELOW THE BELT 49

How does your donation make a difference? All contributions, large or small, get us closer to finding better treatments for cancer. Clinical trials are a costly exercise, but the outcomes are so worthwhile. This is where your donated funds go:

$500-$1000

$5000-$10,000

Sponsor a travel fellowship

Support a concept workshop

Will support the attendance of an ANZUP multidisciplinary member at a conference or scientific meeting.

Will allow us to hold a face-to-face Concept Development Workshop to discuss new research ideas and concepts to consider developing into a future grant applications.

$50k–$250k

Kick off a pilot study Will allow us to invest in a pilot study to test the feasibility of promising drug therapies, surgical methods, post-operative care and palliative care options.

Any donation to ANZUP over $2 is fully tax deductible. If you would like to donate to ANZUP, you can donate through our website www.anzup.org.au/donate or by calling ANZUP on +61 2 9562 5042.

How can you get involved? Support comes in all shapes and sizes. Whatever you are interested in doing to support ANZUP, let us know and we will help support you on the journey.

Sponsor a fundraiser – Donate to a friend or family member participating in a sports festival.

Donate In Memoriam – Honour your loved one with a contribution in their name or asking for donations in lieu of funeral flowers.

Participate in a sport festival – Get involved with a fun run, triathlon, walkathon the options are endless! - and represent ANZUP.

Hold an event – Be it a morning tea, a raffle, a barbie, trivia night, or book club, we can support you to run your own fundraising event.

Provide in-kind support – In-kind donations include providing the budget for a specific staff member, meeting room use, auctionable goods for fundraising, advertising and creative support, and can help us deliver more interesting and educational information.

50 A LITTLE BELOW THE BELT

Give in Lieu of a Gift – Donate towards a special occasion in lieu of a traditional gift. For example, a wedding, birthday or retirement celebration. If it is your special occasion, why not ask for donations instead.

Get inspired & host your own A great idea is just the beginning… here are a few key dates and events to get you started when planning your own fundraising event:

January 26th – Australia Day – host a barbie or beach cricket game

February 4th – World Cancer Day 6th – Waitangi Day, New Zealand

July 19th – ANZUP Consumer Engagement Forum, Adelaide – attend to find out more about cancer trials

August Winter – Host a bonfire or cosy movie night for a gold coin donation

14th – Valentines Day – show someone this V-day you love them by make a donation in their honour

September March Kidney Cancer Month 15th – Melbourne Below the Belt Pedalthon – join us to ride against urogenital cancer 30th – National Doctor’s Day

April Testicular Cancer Awareness Month – wear purple & donate a gold coin!

Prostate Cancer Awareness Month (PCFA) 15th – Sydney Below the Belt Pedalthon – grab your workmates & sign up a team

October 5th - 11th – Mental Health Week – cancer has a bigger impact than just the physical. Host a mental health week morning tea and check in with those around you 31st – Sweet Swap – why not swap your purchase of Halloween lollies with a donation to ANZUP?

7th – World Health Day

November May

Movember – Movember donates funds to some of ANZUP’s clinical trials

Bladder Cancer Awareness Month 12th – International Nurses Day

December June

25th – Christmas

15th - 21st – National Men’s Health Week

A LITTLE BELOW THE BELT 51

The ANZUP Below the Belt Pedalthon

The Below the Belt Pedalthon was founded in 2014 by Simon Clarke to promote awareness of the highly prevalent but less ‘glamorous’ below the belt cancers.

“After being diagnosed with testicular cancer as a young adult, the Pedalthon came to life through through my own experience and as my ambition to help others who may be in a similar situation.” Simon Clarke The Pedalthon has now been running in Sydney since 2014, and Melbourne since 2018. In doing so, it raises much needed funds for clinical trials. All funds raised through the Pedalthon go to ANZUP’s Below the Belt Research Fund to improve treatment and outcomes for prostate, bladder, kidney, testicular and penile cancers.

52 A LITTLE BELOW THE BELT

ANZUP Pedalthon Below the Belt Pedalthon, since 2014:

BELOW THE BELT PEDALTHON EVENTS

24 1800 OVER

BELOW THE BELT RESEARCH FUND PROJECTS AWARDED FUNDING OVER THE PAST 4 YEARS

RIDERS

RAISED OVER

$1.65 MILLION

A LITTLE BELOW THE BELT 53

Sydney Pedalthon

BTB Research Fund Awardees ANZUP exists to improve outcomes for those affected by below the belt cancers. We do this by performing clinical trials to generate the evidence which improves treatments and outcomes for people affected by these diseases. The Below the Belt Research Fund was established in 2015, as a first step to achieving independent seed funding new research project ideas, to translate into fully fledged clinical trials. Funding to support this program is achieved through the Below the Belt Pedalthon events in Sydney and Melbourne. Every year ANZUP calls for submissions of Below the Belt Research Fund grant applications, and at its Annual Scientific Meeting (ASM) the Grant recipients are announced. Recipients are awarded grants of up to $50,000 to support their research ideas. At the 2019 ASM in July, ANZUP announced this year’s Below the Belt research Fund recipients. Congratulations to all applicants and recipients.

2019 Recipients

BEN TRAN RECIEVING HIS AWARD FROM GUY TONER

ANDREW MOE RECIEVING HIS AWARD FROM GUY TONER

Dr Andrew Moe – SUBDUE – 1 SUBurothelial Durvalumab Injection - 1 “Our research group is aiming to create a new treatment for patients with bladder cancer.” Durvalumab is a medicine that targets the body’s immune cells to help combat bladder cancer. When given intravenously, durvalumab has proven effective at slowing advanced bladder cancer that has spread to other organs. We will recruit patients with bladder cancer who are recommended to have their bladder removed.

54 A LITTLE BELOW THE BELT

Dr Ben Tran – CLIMATE: Assessing the Clinical utility of miR-371 as a marker of residual disease in Clinical Stage 1 Testicular Germ Cell Tumour, following orchidectomy Testicular germ cell tumours (TGCT) are highly curable, even in the metastatic setting where platinum-based chemotherapy is highly effective. Patients diagnosed with clinical stage 1 (CS1) disease are most likely cured following orchidectomy, however, up to 50% do develop recurrence and require intensive courses of curative chemotherapy. A short, less toxic course of adjuvant chemotherapy can be used to reduce the risk of recurrence, but at a significant risk of over treating the large group of patients who will never recur. CLIMATE is an innovative registry-based translational clinical trial in TGCT that will generate preliminary data demonstrating the clinical utility of miR-371 in CS1 disease. CLIMATE will enrol CS1 patients recommended for active surveillance, test for miR-371 at predefined time points and correlate these findings with recurrence, leveraging prospectively collected clinical data within iTestis, a national testicular cancer registry.

Sydney Pedalthon

CAROLE HARRIS RECIEVING HER AWARD FROM GUY TONER

Dr Carole Harris – What, where, when and how long? Using PBS data to understand patterns of care and survival in Australian patients treated for metastatic clear cell kidney cancer Our study will describe how medications are used across Australia to treat advanced kidney cancer: which drugs, in which order and for how long. We will understand how long people live with these therapies and if there are sequences of treatment that appear to work better. This study has the advantage that it can look at how cancer therapies are used and how effective they are at a population level. Our future aim will be to use this “linkage data” method as the backbone of real-world clinical trials, where ANZUP members in every hospital in Australia can take part, not just those of us lucky to be in hospitals with many research resources.

“Real world clinical trials make small changes in the way we use standard treatments, and can have big impacts to improve patients’ outcomes.” Prof Ian Davis

CRAIG GEDYE RECIEVING HIS AWARD FROM GUY TONER

Dr Craig Gedye – AdapTax: feasibility, acceptability and safety of adaptively dosed docetaxel in men with metastatic castrateresistant prostate cancer When prostate cancer spreads, injections that suppress the male hormone testosterone can control the cancer for some time, but it almost always starts to grow again later. These vulnerable and resistant cells of the cancer are often holding each other in balance; and when a treatment is used it can favour one group of cancer cells over another. This trial is designed to test the idea of taking a standard chemotherapy called docetaxel, and if it works to take breaks off the chemo, using it for long enough to control the cancer, but then stopping and saving it up until later to treat the cancer again (and again… and hopefully again, and again). While every man’s cancer is predicted to eventually become resistant to the chemo treatment, using an effective treatment in more sparingly is hoped to spread the benefit over a longer period of time, without any more side-effects.

“I cannot begin to express how important ANZUP’s support has been for me, and I only hope that the work we are doing is successful and repays that support and investment.” A/Prof Craig Gedye

A LITTLE BELOW THE BELT 55

Sydney Pedalthon

KATE MAHON RECIEVING HER AWARD FROM GUY TONER

Dr Kate Mahon – Randomised trial of biomarker-driven intermittent docetaxel versus standard-of-care (SOC) docetaxel in metastatic castration-resistant prostate cancer (mCRPC) “This trial aims to improve patient quality of life” Dr Kate Mahon In Australia last year, over 3,000 men died from prostate cancer and many more are living with this disease. Chemotherapy in the setting of prostate cancer which has spread to other parts of the body improves symptoms and survival, however, chemotherapy is associated with significant side effects. The standard way to deliver chemotherapy is to continue on a 3 weekly schedule while the cancer is still responding but this is often limited by an accumulation of side effects. Several small studies have suggested that some patients can safely have breaks in chemotherapy with less side effects and a better quality of life. However, this is difficult to achieve with our current monitoring strategies. We have developed a new blood test which can accurately identify patients who are responding to chemotherapy. We plan to use this blood test to guide breaks in chemotherapy to provide more tolerable treatment and ultimately improve patients’ quality of life.

56 A LITTLE BELOW THE BELT

SHOMIK SENGUPTA RECIEVING HIS AWARD FROM GUY TONER

Professor Shomik Sengupta – Genomic & immunological predictors of response to intravesical therapy Many bladder cancers are treated with medications put into the bladder in order to prevent them the cancers from growing further into the bladder wall. In some cases, these treatments do not work as they are meant to. At present, we do not know when the treatments might fail. The aim of this study is to assess bladder cancer samples to identify changes within them that may predict whether the commonly used treatments will work or not.

Below the Belt Research Grants provide much needed seed funding to support ANZUP members to progress new trial ideas to the point of becoming full scale studies.

Sydney Pedalthon

Sydney Pedalthon overview In 2019, ANZUP held its 6th Sydney Below the Belt Pedalthon, and 8th Pedalthon event overall. The Pedalthon is one of ANZUP’s major fundraising activities each year and every cent we raise through the event goes directly towards clinical trial research via the Below the Belt Research Fund. This funding initiative supports ANZUP members to develop novel research projects with a view to becoming future ANZUP trials. ANZUP’s goal is to raise enough funds to be able to fully support its own trials, and the Pedalthon provides a step in that direction.

174

10 September 2019

RAISED

RIDERS

35 TEAMS

$160,000

BRAND NEW TEAMS

TEAMS HAVE RIDDEN ALL 6 SYDNEY PEDALTHONS

A LITTLE BELOW THE BELT 57

Sponsors & supporters Our thanks goes to our wonderful sponsors Morton Real Estate, Homely, GenesisCare, Pfizer Oncology and Northshore Mitsubishi, as well as our very generous event supporters and donors.

MEMBERS OF TEAM MORTON

Platinum Sponsors This year our sponsorship peloton was held by Morton Real Estate and online real estate portal Homely.com.au as joint Platinum Sponsors. We took a few moments with Morton’s Principal Darren Davis to discuss all things Pedalthon: So Darren, you’ve now sponsored the Pedalthon two years running – why is this important for you? We returned this year as sponsors as Morton is committed to the success of ANZUP’s cancer trials. We were also proud to partner with our colleagues Homely.com.au and work together to give back to the community and help achieve better cancer outcomes. It wasn’t just sponsorship though, it was a whole team affair?

track! But when I reached the hill and heard the tunes of DJ Kate Monroe, it made the effort worthwhile. It was a well organised day with just a really good spirit and warmth amongst everyone that attends, no matter what level of rider you are. The fundraising by the Morton team was very impressive, what was your secret? Promotion – was all about visibility! We ran an extensive social media campaign with Instagram posts and stories, as well as promotions through our agency window screens and website homepage. We also involved the whole team in our fundraising – we added our Pedalthon team’s donation link to all the email signatures of Morton staff. This helped the cause stay visible to our colleagues, clients and our community.

Yes, as sponsors, we feel like we are not only here to raise much needed funds for trials DARREN DAVIS, MORTON but also to participate on the day to show our support. Riding in the Pedalthon ticks several healthy Also again this year we ran a fundraising event with our workplace practices for us, as team building and exercise friends at the Lord Roberts Hotel - this alone raised over are at the forefront of Morton’s culture. $1200. It’s about using your connections and being creative with your fundraising. We had two full teams ride in the Pedalthon and extras cheering us on from the sidelines. Even one of our clients What would you say to others considering the Pedalthon came out to Eastern Creek to support this year! in 2020? Did your team enjoy the race? Yes! The Pedalthon is loads of fun. Now I am not a professional cyclist - I was huffing and puffing around the

58 A LITTLE BELOW THE BELT

We would highly recommend others to get their workplaces involved – it’s a great opportunity for teambuilding, a little exercise and, of course, giving back. Also, a fun day out!

Sydney Pedalthon

JOHN KETELBEY FROM GENESISCARE

Gold Sponsor GenesisCare is committed to delivering better treatments to improve outcomes for patients with cancer. As a leading provider of care to cancer patients, we actively invest in and support research programs and clinical trials and are committed to expanding patient access in this area.

“We were delighted to be the gold sponsor for the 2019 ‘Below the Belt Pedalthon’”.

“It was very insightful to hear from people directly involved in conducting the research and to really understand where the funds raised are going,” said John Ketelbey, Head of Business Development, Australia for GenesisCare. “There was a fantastic atmosphere on the day, and we loved taking part in this event to highlight such a worthy and important cause,” John added. Congratulations to the ANZUP team for organising a very well-coordinated event.

ANZUP’s purpose is very close to our hearts and the team of GenesisCare cyclists got behind the cause, raising awareness and sponsorship with passion, and truly embraced the challenge on the day. With very special thanks to the GenesisCare team for taking part, John Ketelbey, Elizabeth Marshall, Fergus Rourke, Peter Morrison, Richard Kim and Duncan McCrae.

A LITTLE BELOW THE BELT 59

Sydney Pedalthon

Silver Sponsor Northshore Mitsubishi in Ryde joined the Pedalthon this year as a Silver Sponsor. They also entered a strong team of 4, captained by Dealer Principal, Warren Smith, and managed to pump out 58 laps and over 220km between them. “It got me back on the bike again, it was great to be involved and we’ll be back again next year. We wish ANZUP the greatest of success – we hope they have another bumper year next year with their fundraising and efforts.” Warren said.

Silver Sponsor Pfizer Oncology has been a regular face at the Sydney Pedalthon both on and off the track since its inception in 2014. This year, Pfizer generously returned for the fourth time as Gold Sponsors for the event. Not only that, but 2019 was their sixth time as race participants – which means that they have supported the race and pedalled with us at every Sydney event. This year’s team, the Pfizer Onco-Bites were particularly dedicated, spending a combined total of only 16 minutes (of the 3 hour race time) off the track. What stars!

60 A LITTLE BELOW THE BELT

“We hope that some part of what we did goes towards changing someone’s life for benefit of the future” Alan Zeid, Northshore Mitsubishi Sales Manager.

Sydney Pedalthon

With thanks to our very generous event supporters

INTELLIGENT NEWS THESATURDAYPAPER.COM.AU

A LITTLE BELOW THE BELT 61

Sydney Pedalthon

Our riders and teams Thank you to all the riders who competed in the 2019 Below the Belt Pedalthon in Sydney. We look forward to having you back next year! With thanks to the 2019 teams • A2Z

• Balance UTS & Tri Club

• Lion James Squires

• NSW Police

• A2Z1

• Clayton Utz 1

• Lion Kosciuszko

• Pato Pedalos

• A2Z2

• Clayton Utz 2

• Macquarie Crankers

• Pfizer Onco-Bites

• Alinta Energy Fun

• Clayton Utz 3

• Morton

• Quarry Mining

• Alinta Energy Guns

• Designcycle

• Northshore Mitsubishi

• RFS NSW

• ANZUP All Stars ]

• Fire & Rescue NSW

• Norton Rose Fullbright

• The Spokey Dokes

• ANZUP Dream Team

• Gallagher

• Novartis Flyers

• Tonic Health Media

• Astellas Allstars 1

• Havencab Group

• Novartis Pedalers

• Astellas Allstars 2

• Janssen Oncology

• NSW Ambulance

62 A LITTLE BELOW THE BELT

Sydney Pedalthon

PETER GRIMISON WITH KAARLE MC CULLOCH

ANZUP DREAM TEAM

Fundraising Heroes We are thrilled to announce that we have raised more than $160,000 and the donations are still rolling in. An extra big thank you to each and every one of our riders, sponsors and donors for your amazing participation and support. Congratulations to the ANZUP All Stars, the 2019 Team Fundraising Champions, who raced across the finish line with a whopping $10,842 raised. Congratulations also goes to Peter Grimison, the 2019 Individual Fundraising Champion who raised $5,684! A special shout-out to the top teams and individual fundraisers for #SYDPedal19. It is only with your support that we are able to improve treatments and outcomes for those with below the belt cancers.

DARREN DAVIS FROM MORTON

MACQUARIE CRANKERS

Team Fundraising Champions ANZUP All Stars $10,788

Individual Fundraising Champion Peter Grimison $5,684

Teams

Individuals

1. ANZUP All Stars - $10,842

1. Peter Grimison - $5,864

Morton - $7,685

Craig Gedye - $4,054

Quarry Mining - $6,580

Haryana Dhillon - $3,201

Macquarie Crankers - $5,260

Shona Shedden - $2,417

ANZUP Dream Team - $3,890

Lisa Horvath - $2,147

QUARRY MINING

A LITTLE BELOW THE BELT 63

Sydney Pedalthon

Champions of the Track Congratulations to NSW Police who won the 2019 Below the Belt Champions and got to take home the coveted trophy, completing an incredible 164 laps in the 3 hour time frame.

NSW POLICE

Congratulations to our other winners of the day: • Best Dressed Individual: James Paolini • Best Dressed Team: Novartis Flyers • Fastest Lap - Male: Daniel Schwartz • Fastest Lap - Female: Alanna Rados

KAARLE WITH DANIEL SCHWARTZ

KAARLE WITH ALANNA RADOS

• King of the Mountain: Mitchell Dixon • Queen of the Mountain: Alanna Rados • Most Laps - Male: Will Fraser • Most Laps - Female: Tara Gordon • Community Team Winner: NSW Police - 164 laps • Diversified Team Winner: Lion Kosciuszko - 152 laps

KAARLE WITH ALINTA ENERGY GUNS

• Industrial Team Winner: Alinta Energy Guns- 131 laps • P rofessional Services Team Winner: Norton Rose Fulbright - 160 laps • M edical and Pharma Team Winner: Janssen Oncology - 107 laps • Winner 2 Fastest Laps: Daniel Schwartz KAARLE WITH NORTON ROSE FULBRIGHT

64 A LITTLE BELOW THE BELT

Sydney Pedalthon

Lunch time Q&A Panel As part of the #SYDPedal19 race-day festivities, ANZUP hosted a Q&A panel with 5 ANZUP members, who gave a brief and insightful synopsis into how the Below the Belt Research Fund has contributed to their research endeavours.

“The Below the Belt Research Fund has helped us turn a small project into a study with global interest.” Prof Lisa Horvath

“Thank you for participating and contributing to the Below the Belt Fund. It is only with your help that we can make this research happen and get these ideas off the ground.” “ANZUP is now an international leader in clinical trials. We’re presenting ground-breaking work, and really making a difference.” Associate Prof Peter Grimison

“The Below the Belt Fund has been fantastic. With the big funders, where we are asking for millions of dollars for a trial, they want to see some preliminary data first. The Below the Belt really allows us to do that. It allows us to produce a little bit of data so that we can go to the big funders and say ‘look, we can do it!’”

Dr Craig Gedye

“We have a long way to go in cancer care. We have to think about how we do things differently. Research wouldn’t happen if it wasn’t for everybody here taking time out of their busy schedules to make research happen and help us make lives better for those affected by cancer.” Dr Catherine Paterson

Dr Kate Mahon

A LITTLE BELOW THE BELT 65

Sydney Pedalthon

New kids on the block: Welcoming Quarry Mining to the Sydney Pedalthon This year, we were excited to welcome four new teams to the Sydney Below the Belt Pedalthon. Despite being a newcomer, Quarry Mining proved themselves as a frontrunner as one of our top overall fundraisers! We had the opportunity to chat with Quarry Mining team captain, Kari Armitage, about her team, what the major challenges were on the day, and even managed to score a couple of key fundraising tips. Hi Kari! We were delighted to welcome the Quarry Mining team to the ANZUP Below the Belt Pedalthon for 2019. Tell us a little bit about the Quarry Mining team. The Quarry Mining team is a team of 75 working in the mining supply chain. Quarry Mining manufactures underground mining equipment for drilling of roof support and also has a pneumatic equipment manufacture, servicing and repair. We are passionate about contributing to our community and to charities in need. A number

66 A LITTLE BELOW THE BELT

of our team are keen cyclists and triathletes. How did you find out about the Below the Belt Pedalthon? A friend of mine who is also a triathlete works for Dr Craig Gedye (ANZUP member) at The Mater Clinical trials unit in Newcastle. What was a highlight of the event? Apart from getting to cycle on such an amazing track – the lunch time panel discussion was amazing. Also – we were so well catered for in our own garage which was filled with goodies to keep our energy levels up. Any challenges or funny stories? We loved the challenge of the laps and racing each other in a safe environment. Lots of funny moments with Dr Gedye on a bike and plenty of opportunities for little challenges such as King and Queen of the Mountain.

The Quarry Mining team managed to raise $6,580 for below the belt cancers! A great effort. Any fundraising tips for future riders? We like to promote a little bit, from a lot of people. This really adds up and means we can contribute to more worthy causes. Cycling is the new golf – it is becoming more and more high profile and we love it. It is especially great for company branding. We are going to have a much bigger QM team next year at #SYDPedal2020. We can’t wait.

Sydney Pedalthon

The King of the Mountain returns: Q&A with 5 time Pedalthon team; Lion! This year, we were delighted to welcome two teams from Lion (James Squires and Kosciuszko) to the Sydney Below the Belt Pedalthon. Lion have been loyal supporters of the Pedalthon for 5 years now, pedalling for below the belt cancer research since 2015. We had the opportunity to chat with Lion Kosciuszko team captain, Jonny Harrison, about Lion’s commitment to the cause, some highlights from the day, and managed a couple of training tips from this year’s Diversified Team champions. Hi Jonny! We were excited to have not just one, but two Lion teams participating in the Pedalthon for 2019. Lion has been a loyal supporter of the Pedalthon for five years now. Tell us a little bit about your team. JH: Lion has been proud to be involved in the event for the last 5 years, and hopefully many more to come. Our teams are typical of what you would find across most organisations; a great mix of recreational riders and weekend warriors, alongside those who take things a little more seriously. We all love to cycle, some of us race competitively, and for others cycling is a great way to keep fit and socialise with some like-minded people. We don’t take ourselves too seriously, and always enjoy a cold beer at the end of the ride!

What inspires you to take part in the Below the Belt Pedalthon year after year? JH: I think most of us have been touched by cancer at some point in our lives, either personally or through close friends and family. I have personally overcome cancer twice and so for me it’s a very personal cause that I am proud to support. The Pedalthon is simply too hard to miss for the cyclists at Lion; a great day on the bike, riding at a superb track, whilst supporting a very worthy cause. There’s nowhere we’d rather be on a sunny Tuesday in September! What was a highlight of the event? JH: I’m not sure how you always manage to organise such spectacular weather, but keep it up! On a serious note it is so humbling to see how many individuals and businesses come out to support the event, and it always sticks in my throat how many people have a personal story to share about cancer. It’s great seeing everyone out on the bikes, having a good time, the smiles on the track and listening to the hum of excitement over lunch as everyone recants their tales from the morning. Any challenges you have had to overcome? JH: Having organised our team for the last 5 years, I usually have 1 or 2 reserve riders up my sleeve for the last minute drop out, but this year we had none

which was great! I’d love to see more businesses join the event, and more of them fielding two or more teams. It’s great to see the event grow, and with the sister race now in Melbourne I think the future possibilities for the Pedalthon are huge. I race competitively on mountain bikes and am humbled to ride with the ANZUP and Pedalthon logos on my race kit as an ambassador. I always have people come up and ask me about the charity and the event, and I think the more we can spread the word the bigger it will be, and ultimately the more we can support the great work done by ANZUP. Lion Kosciuszko was the 2019 Diversified Team Winner, managing a combined effort of 152 laps! An awesome achievement. Any training tips for future riders? JH: Consistency is king, it doesn’t matter how fast your first lap is if you need to keep stopping to refuel. Getting everyone used to riding for 3 hours is important. Beyond that just keep it fun; social group rides before work, or a weekend coffee shop run, whatever it is as long as you ride with a smile then it really doesn’t feel like training! I think the area we need to focus on next year is definitely our fund-raising strategy! I’ve got my eye on that prize.

A LITTLE BELOW THE BELT 67

Sydney Pedalthon

JESSICA QUICK AND TEAMMATE ALANNA RADOS RIDING IN THE 2019 SYDNEY PEDALTHON

Riding for a cause: chatting with Sydney Pedalthoner, Jessica Quick This September, ANZUP took the opportunity to acknowledge Prostate Cancer Awareness month.

We got the opportunity to chat to Jessica, and discuss what the Pedalthon means to her.

With 20,000 new cases of prostate cancer diagnosed each year in Australia, a staggering 1 in 7 Aussie men will be hit with a prostate cancer diagnosis in their lifetime.

Jessica, we are so sorry to hear about your Dad passing recently. What was your experience of supporting a family member going through cancer and a clinical trial?

In acknowledgement of Prostate Cancer Awareness Month, we recognized Jessica Quick, who rode in our Below the Belt Pedalthon at Sydney Motorsport Park on September 10, in memory of her late father Garry Quick. Sadly, Garry passed in May 2019 of prostate cancer.

Thank you for your kind words, as you can understand it’s been an absolutely devastating time for our family. Losing Dad is the hardest thing I’ve ever gone through and I know that life will never be the same without him.

Jessica wore a moving tribute to her dad on her back whilst she rode last week, to remind others of the importance of the Below the Belt Research Fund, and how cancer has had such a devastating effect on so many lives.

68 A LITTLE BELOW THE BELT

It’s heartbreaking to see somebody you love go through cancer and I’ll never be able to comprehend what Dad truly experienced with his battle. However, Dad was always a very positive man and I’m certain it was this amazing attitude that helped him get by. I felt it was so important to maintain this positivity around him and to behave as ‘normally’ as

possible although it was sometimes very difficult. I wanted Dad to have the opportunity to focus on other things and even simple conversations about work, rugby, friends and pets was a nice way for us to achieve this. Dad’s involvement in the ANZUP trial was a celebration of sorts and he was optimistic about the opportunities it presented, not only for his own treatment but also to contribute to vital medical science that will hopefully help others in the future. My parents live in the country so sometimes there were many hours of travel, waiting around time in hospitals and lots of tests and scans. Once again a positive mindset helped him to take the ordeal in his stride and I know he took comfort in his family being by his side offering support. Mum cared for Dad full-time with total dedication and kindness that I’ll always be inspired by although of course she wouldn’t have had it any other way.

Sydney Pedalthon

Why was it important to you to ride in this year’s Pedalthon? The Pedalthon offers such a terrific opportunity to raise awareness of ‘below the belt’ cancers which can be an uncomfortable topic for many. Any chance to promote understanding and get people talking about them is really important, and this event does just that in a social, fun and physically healthy way. Our team was one of many corporate groups and it was great to see how many organisations were involved and providing their support. We are so pleased that you got out there rode for your dad this year. As you know, the ANZUP Below the Belt Pedalthon raises funds for our Below the Belt Research Fund, which provides seed funding to develop vital clinical research concepts. Why do you believe clinical research is so important? Almost everyone has been affected by cancer in some way. To me, it is absolutely critical that research continues and advances so that we can one day find a cure and end the devastation of this terrible disease. Whilst a cure is the ultimate future goal, research conducted by ANZUP is also focusing on helping people who are living with cancer right now by trying to find improved and more effective treatments that improve quality of life. Until a cure can be developed, I think such trials offer a spark of hope for so many and this is equally significant. What would you say to someone who was interested in riding in #SydPedal2020? Don’t hesitate, come and join us! A brilliant day out for anyone, whether you’re new to cycling or a pro you will enjoy the fun and challenge yourself. Each year our team represents a wide range of cycling abilities and it didn’t matter if we were racing for the QOM/KOM or taking it easy and enjoying the laps, we all had such a terrific day together. It’s not every day you get

to ride on a closed motorsport track and that experience in itself is very special. Hopefully you’ll leave the event with more understanding of ANZUP and below the belt cancers and help us to raise much needed funds to support. What was a highlight of the event for you? Riding with my team, who are both colleagues and friends, and sharing the significance of my special tribute for Dad knowing that they all support me. Upon seeing Dad’s photo on my back there were even other riders I didn’t know that called out to me out on the track “well done” or “good for you mate” which was really uplifting and made me smile. You managed to complete your fastest lap in just over 7 minutes – a great feat! Any training tips for our future Pedalthoners? Not my greatest effort to be honest! Another team member and I were nursing colds so we took it pretty easy this year. I did have a go at the sprint and came in a very close second to my teammate Alanna’s QOM of the day so I’m pretty happy with that. As for training, my number one tip would be to keep it simple - just get out there and spend time in the saddle. I commute to work a few days on the bike and really enjoy it, perhaps this could be an easy switch for many people instead of the car or train. Otherwise if you’re still building up confidence to ride on the road, find your nearest cycleway and spend a few hours exploring on the weekend. One of my favourites is the track from Rhodes through Sydney Olympic Park to Parramatta Park along the river.

You raised an amazing $1300 for cancer research. How did you go about this? Any tips for first time riders? My goal was $1,000 and I am thrilled to have exceeded this, thank you so much to all who took the time to donate for your generosity. Whilst I don’t like to be pushy when asking for donations, I think sharing my Dad’s story and wearing his picture at the event went a long way to the fundraising effort. As mentioned previously with so many of us touched by cancer perhaps this helped me to reach people on a personal level and highlight the importance of working together to support ANZUP. Try reaching out to your colleagues or perhaps arrange a fundraising day in the office or at your local school. Social media can be a useful platform to encourage support, maybe you could take people along on the journey by sharing your fitness progress in the lead up to next year’s Below the Belt event and why you’re taking part.

A LITTLE BELOW THE BELT 69

Thanks to Corporate Supporters and In-Kind Supporters Corporate Supporters

In-Kind Supporters

We are very fortunate to have our corporate supporters and partners who enable ANZUP to better support our members and, ultimately, patients and their families. Our 2019 corporate supporters include:

We acknowledge and thank the following organisations for the generosity they have shown by providing their pro bono services. Our 2019 in â&#x20AC;&#x201C; kind supporters include:

Astellas, AstraZeneca, Bayer, Bristol-Myers Squibb, Ipsen, Janssen and Pfizer Oncology

70 A LITTLE BELOW THE BELT

Active Display Group, AFI Branding and The Saturday Paper.

FIGHT CANCER BELOW THE BELT Ride or support and help fight prostate, testicular, bladder, penile and kidney cancer

JOIN US AT: SYDNEY MOTORSPORT PARK TUESDAY 15 SEPTEMBER 2020 LIKE CYCLING?

DON’T LIKE CANCER?

The Below the Belt Pedalthon returns for its 7th year, ready for you, your colleagues and networks to take on the ultimate team challenge.

A diagnosis of cancer can turn a life upside down particularly when the best treatment is not known. The Pedalthon was founded to raise awareness of below the belt cancers and provide ANZUP with the critical funds to improve the lives of more than 27,000 people diagnosed in Australia event year.

Join the fight and ride on Tuesday 15 September 2020 at the iconic Sydney Motorsport Park. The Sydney Pedalthon is a cycling event for all riders – the keen cyclist, the novice or those looking for a new sporting challenge. Teams of up to six take on the task of riding as many laps as possible within 3 hours and with a sprint challenge for the speed demons in the final hour.

Clinical trials help us move research forward to develop the next step in treatment while giving patients the very best possible care. Every cent raised by the Pedalthon goes directly towards clinical trial research, which means straight into the hands of experts committed to treating prostate, bladder, kidney, penile and testicular cancer better. We need your help to find more trials and make a difference.

“Every dollar raised through the Below the Belt Pedalthon for the Below the Belt Research Fund goes back to support research. Do you know of many other charities with 100% investment of fundraising back into their cause?” ANZUP Chair, Professor Ian Davis

“Every year the event gets bigger and better and I am looking forward to cheering on everyone as they roll around Eastern Creek raceway raising money for a great cause! I look forward to seeing familiar and also welcoming new faces out there!” Kaarle McCulloch, Pedalthon Ambassador, World Champion Track Cyclist.

For more information go to www.belowthebelt.org.au or email pedalthon@anzup.org.au

from all of us at ANZUP Cancer Trials Group

Gumtree - the scent of Australia. Artwork donated by James Daw Illustration. http://www.daw2art.com/

ANZUP Cancer Trials Group Level 6, Lifehouse Building, 119-143 Missenden Road, Camperdown NSW 2050 Tel: +61 2 9562 5042 Email: anzup@anzup.org.au www.anzup.org.au