A little below the belt consumer magazine - July 2018

A little below the belt Conducting clinical trial research to improve the treatment of bladder, kidney, testicular & prostate cancer

BOOK YOUR FREE PLACE AT OUR 2018 COMMUNITY FORUM SUNDAY JULY 8 • 1PM – 4PM • SYDNEY • PUTTING PEOPLE FIRST AN ANZUP CANCER TRIALS GROUP PUBLICATION

ISSUE 9, JULY 2018

TESTICULAR

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PROSTATE

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BLADDER

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KIDNEY

YOU VS.

CANCER DISCOVER THE LATEST IN CUTTING EDGE CLINICAL TRIALS AND RESEARCH HEAR FROM WORLD-RENOWNED BELOW THE BELT CANCER EXPERTS THE COMMUNITY ENGAGEMENT FORUM SUNDAY 8 JULY 2018 HYATT REGENCY, SYDNEY 1PM – 4PM

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

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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.

Urogenital cancers are those coming from the testicles, prostate, kidney or bladder.

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. To bring a trial to fruition, it is much more productive to get people together to work through the science, develop trial concepts, write the protocol documentation, and other things that need to be done. All of this is separate from the other task of sourcing other resources including funding to support much larger amounts of money to support the trials themselves.

We thank and acknowledge AstraZeneca for their invaluable support in ensuring the dissemination of ANZUP’s consumer magazine, ‘A little below the belt’.

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.

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Above: The inaugural Below the Belt Pedalthon, Melbourne More information on page 46

What’s inside 05 Message from the Chair, Professor Ian Davis 08 Consumer Advisory Panel update 10 CEO update 11 What does a clinical trial involve?

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 below.the.belt

ANZUP Cancer Trials Group

13 Joe’s quest to simplify cancer 15 iTestis: Generating a platform for sustainable testicular cancer research 16 Spotlight on testicular cancer 17 ‘Billion-dollar molecule’ may extend life in men with prostate cancer 20 800th patient marks ENZARAD prostate cancer trial milestone 21 Medicare funding for prostate cancer

22 Spotlight on prostate cancer The International Kidney Cancer Coalition, Annual 23 Conference ‘Expanding Circles’

25 Spotlight on kidney cancer 26 Concept Develpment Workshops 28 Spotlight on bladder cancer 29 Exercise in cancer care 31 Innovation and Education 32 Current ANZUP trials 45 Sydney Pedalthon 46 Melbourne Pedalthon

ACN 133 634 956 ABN 32 133 634 956

57 Fundraising champions 58 What does a donation look like?

Published by ANZUP Cancer Trials Group Ltd. Copyright.

Editor Lucy Byers. Contributing editors Gillian Bailey and Michelle Bowers. Graphic design by Designcycle 4 A LITTLE BELOW THE BELT

59 Thanks to Corporate Supporters and In-Kind Supporters

Message from the Chair, Professor Ian Davis

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

It’s a catchy title, we like it – hopefully it grabbed your attention. What are we talking about? Not belts or any other fashion accessory. Not things that cause only “little” effects. Arguably they are not always even in the belowbelt geographical area. We’re talking about things that affect many of us, and things that do not fight fairly. These are the cancers that affect the genitourinary system: prostate, kidney, bladder, and testicular cancers, or as we like to say ‘below the belt cancers’. Combined together, these cancers outnumber other cancers substantially, but more importantly they can have long lasting effects even when they are cured. The cancer and its treatment have ripple effects that can go on to cause distress and difficulty for other people linked to that person, as well. Simply counting the number of cases gives a gross underestimate of their impact.

There is good news amongst all of this. We are now much better at detecting these cancers, especially the ones that would have gone on to cause problems or death if they had not been found and treated early. Our treatments are much more rational and effective than they used to be. Increasingly we are learning where sometimes more treatment is actually too much, and where we should step back and do no harm rather than jumping in just because something is found. That is counterintuitive (“It’s there, do something!”) but we have all learned from hard experience that one person might need intensive assessment and treatment whereas another person may not.

That’s all great stuff. Of course it works that way.

Surely that’s the only way to approach these complex problems? You would think so, but in many cases the reality is that we do not have good evidence to guide us as to the best way to proceed. We often extrapolate from evidence in similar but not identical situations, or based on clinical experience and modified by a good understanding of the needs of the person. That is not to say it is “art” or “guesswork” although in all honesty that can be part of it. We prefer evidence-based medicine over “eminence-based medicine,” which is just a nice way of saying “I’m important and I have an opinion so don’t question it.”

So where does the evidence come from? How is it that health professionals are able to make confident recommendations even in the face of incomplete information? And the opposite side of that coin is equally important: how can we tell when someone who sounds confident is, um, talking out of one of their below the belt bits? We have learned over many years that no matter how good the lab research is, or how crazy the idea might seem, at some point we have to test these questions in real live humans by doing clinical trials. Clinical trials take information we already have, see where the new research and resulting new treatments might fit, and then test the question in carefully controlled situations. This will then generate confidence that the outcomes of the trial will tell us something important: how to use a new treatment safely, in the right people, at the right time, to result in measurably improved outcomes, so that we can then use

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ANZUP SCIENTIFIC ADVISORY COMMITTEE MEETING

We also now have more effective and better tolerated treatments for when the cancer cannot be cured.

These are of course mainly aimed at shrinking and controlling the cancer. We are becoming more and more aware of the other needs that people have who are affected by these cancers, and our treatments and advice are more tailored and personalised than before. Our patients and their families are involved in treatment decisions and our recommendations need to match up with their needs and desires.

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that information to alter health care policy and practice. From there we take this new information and use it as the starting point for the next steps. We need to continue to generate better evidence.

Most clinical trials are performed by drug companies. Sometimes people are suspicious of the drug companies developing new treatments. Some of these companies have annual turnovers that exceed small countries, so it’s not surprising that they might be looked upon as being in it for the money. It doesn’t help when we hear about news of immoral and exploitative companies artificially cranking up prices so that they can profit from the misery of others. Thankfully that is very rare. Most companies understand that they will only survive if they deliver a useful product. They also understand that they must devote resources to research and development so that things can continually improve. And I don’t think any of us would begrudge a company and its shareholders making a reasonable profit from a treatment they have developed that revolutionises cancer outcomes. These people are not evil, and we all need to work with them to get the best results for our patients.

However, drug companies do work under certain business constraints. They are unlikely to put resources into something that will develop a competitor’s product. They want to get their new and effective treatment to market quickly so they can recoup their investment costs before their patent runs out.

These sorts of imperatives often shape the way new treatments are developed and what types of diseases might be targeted.

This is where groups like ANZUP come in. ANZUP is a registered charity and a not-for-profit company, whose members come from all professional groups, involved in the care of and research into below the belt cancers. We have strong community representation at every level of the organisation, from the Board to our Scientific Advisory Committee and its subcommittees, and of course our vibrant

and effective Consumer Advisory Panel. We work all the time in our “real lives” to help people with below the belt cancers, so we understand where the clinical needs are and we are continually advised on these by our community representatives and other stakeholders. We also understand the treatment and research landscapes and, as much as anyone can, we have pretty good vision as to how the broader field is developing. That means we can ask and answer the key questions that a drug company might be unable or unwilling to do. The work we do often means we have to work with one or more companies to get this work done, but the difference is that it is being done by us (and you), and without any questions of a commercial overlay.

That is what we do.

We understand the needs and the opportunities, listen to those affected by these cancers, ask the important questions, and try to answer them in such a way that we can make a real difference.

This is hard work, and to do it properly can sometimes take a long time and cost a lot of money. On top of that, we understand that we have a responsibility to bring together health care professionals, scientists and the broader community who are involved in these cancers. We need to make sure people are well educated and well trained to do the necessary work. We want to foster the next generation of clinician-scientists so that this work will continue long into the future, for as long as it is needed. This is important, and that’s why we are here.

This year, 2018, marks the tenth year of ANZUP’s existence.

Over that time we have moved from a small organisation to a membership of well over 1300 people across Australia, New Zealand and internationally. We have run clinical trials involving

ANZUP ClinTrial Refer In July 2014 ANZUP released its first 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).

thousands of patients, and we are now recognised internationally for the importance and quality of the work we do. And it is all because our members and our supporters are so dedicated to finding better options for people affected by genitourinary cancers, generously donating their time and expertise and resources to make sure that ANZUP continues its important work.

ANZUP has limited resources and we need to find funding for every project we do. We are fortunate to receive some limited infrastructure support from the Australian Government through Cancer Australia, although this is not enough to cover our activities, and we are not allowed to use any of that funding to support the costs of doing clinical trials. This is where our charitable status and our fundraising activities come in. We rely on these and on links with other like-minded organisations to keep ourselves going, be able to grow, and to do our work.

Research grants are hard to come by and often do not contain all the resources we need. Our links to companies and to philanthropy or other organisations also provide opportunities to grow these resources. But cancer seems to have an unending hunger, and we know that we have more to do before we can consider stopping our important work. Please contact us if you want to know more about any of this or if you are interested in helping support what we do. Everything helps!

This edition of “A little below the belt” is once again packed full of information about our activities and people. You will read about our trials and our other undertakings. You will see how we are making a difference and how we are taking a leadership role in the international cancer research community. You will read about some of the amazing individuals and groups that are part of ANZUP and to whom we are so grateful. Other resources are available through our web site or our ANZUP ClinTrials Refer app. Dive in, read and enjoy, and I hope you get the same sense we do that all of this is really starting to make a difference. That’s why we are here and, since you’re still reading this, it’s why you are here as well.

There is so much to celebrate - a lot has happened in the ten short years of our existence! We are making a difference. But while anyone is still being affected by one of these cancers, we know our work is not done, and we must continue to do better. Thanks for your interest in ANZUP. IAN DAVIS Chair

To download the free app, please visit: • Apple iTunes: https://itunes.apple.com/au/app/ clintrial-refer-anzup/id894317413?mt=8

• Google Play: https://play.google.com/store/apps/ details?id=com.lps.anzup

• Or go to the App/Android store and type in ANZUP

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Consumer Advisory Panel update

By Belinda Jago, CAP Chair

The ANZUP Consumer Advisory Panel (CAP) plays a vital role in the provision of advice and feedback from a consumer perspective on issues as diverse as the direction of general research to community engagement and support.

To be a member of the CAP, you will have been a cancer patient or carer of someone affected by cancer with a commitment to clinical trials research to improve the outcomes of those affected by testicular, prostate, bladder and kidney cancers. All CAP members are invited by the Board to become a Consumer Member of the company.

The ANZUP Annual Scientific Meeting (ASM), which takes place in mid-July, provides a key opportunity for CAP members to take part in education sessions and the chance to meet with clinicians and researchers, providing input from a consumer perspective into ANZUP clinical trial research. The CAP meets face to face at the ASM, where we are provided with a comprehensive education program to support the work we do as CAP members.

The CAP provides the invaluable insight of a patient’s point of view at the earliest stage of clinical trial development.

This ensures it is more than likely there will be some benefit to the patient. Quality of life is always a very important consideration.

COLIN RIDING IN THE PEDALTHON

of healthcare professionals and patient advocates to learn about ANZUP. Book your free place by going to www.anzup.org.au Members of the CAP are invited to the ANZUP Concept Development Workshops. These full day workshops allow clinicians, who have an idea for a new trial to brainstorm and present potential ideas to a multidisciplinary team of researchers.

Funds are needed to facilitate and develop clinical trial research, which is why ANZUP has an annual fundraising cycling event, the Below the Belt Pedalthon. The event has been held in Sydney for the past 4 years and this year the inaugural Melbourne Pedalthon was launched at Sandown Racecourse with over 120 riders and supporters. The event was a huge highlight for the CAP with a few of us attending the event to support and cheer the riders on.

A special thanks to CAP member Colin O’Brien, captain of the Roderick Insurance CAP All Stars team. Colin did an amazing job riding for the 3 hours and raised some great funds. Thank you also to Ray Allen, our CAP Deputy Chair, who travelled from Sydney to attend the event.

The Community Engagement Forum is also being held during BELINDA JAGO RIDING IN THE PEDALTHON the ASM on Sunday 8 July in Sydney. The free community forum will provide information and the opportunity More clinical trial research and consumer involvement to discuss the importance of clinical trials as well as will be needed as ANZUP continues to grow. In ten the impact a diagnosis of ‘below the belt’ cancers years so much has been achieved and from a CAP can have on a person and their family. It’s a great perspective it is exciting to be part of this successful opportunity to engage with an experienced team and exciting organisation.

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Have you or your loved ones been affected by below the belt – prostate, kidney, bladder 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.

The “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, 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 anzup@anzup.org.au A LITTLE LITTLE BELOW BELOW THE THE BELT 9 A

CEO update

By Margaret McJannett, ANZUP CEO

In 2008 ANZUP was formed by the merger of the Australian Prostate and Urogenital cancer Group (APUG) and Australia & New Zealand Germ Cell Trials Group (ANZGCTG). Over the past 10 years ANZUP has come a very long way. We have grown from 150 members in 2008 to more than 1,300 members in 2018. Our members are made up of doctors and specialists from many different medical fields. And importantly our co-operative trials group is now recognised both nationally and internationally for its clinical trials into below the belt – bladder, kidney, testicular and prostate – cancers.

We have active clinical trials across all of the cancers we represent. Collectively these trials involve thousands of patients and the commitment and expertise of our dedicated members and their clinical and research staff.

ANZUP is working closely with those doing translational research, for example, taking blood and tissue samples from patients to be used in research to hopefully deliver personalised medicine, in other words, giving the right treatment to the right patient at the right time. We are also involved in health economics and health outcomes work.

It is important to understand how to achieve maximum value for money whilst ensuring clinical effectiveness, and cost-effectiveness of cancer treatments. Supportive care research is also a focus for ANZUP – it is necessary we understand all forms of care and support that can be provided to improve the quality of life of those living with cancer, cancer survivors and their family and friends.

Over the course of the past decade we have established working relationships with trials groups in Australia, New Zealand, Ireland, UK, Europe, USA, Canada, and others planned. We now collaborate with key groups including those involved in community support, advocacy and fundraising. ANZUP is also frequently and visibly present at major international meetings, sharing and promoting our work.

Improving outcomes for cancer patients in the next 10 years and beyond means we must look to the young scientists and clinicians of the future. Mentoring, providing educational events and encouraging young scientists and clinicians remains an important focus. This is reflected in the expanse of educational events ANZUP delivers and supports each year. The ANZUP Annual Scientific Meeting continues to provide an ideal platform to discuss and present the latest updates in cancer diagnosis, treatment, research and supportive care. In addition, our concept development workshops have grown to annual full day workshops. These events mentor and foster those early in

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their careers. Attendees are encouraged to share new ideas and concepts that could one day lead to full clinical trials.

This year we will hold our fifth Sydney Below the Belt Pedalthon. The success of this event has provided a platform to raise awareness about below the belt cancers but also the importance of clinical trials. We have raised over $1 million since 2014 with these vital funds supporting our research. We are extremely grateful to the Pedalthon community; riders, donors, supporters and volunteers and hope this fifth year will be as fun-filled and successful as previous Pedalthons. The Sydney event will be held on Tuesday 18 September at Sydney Motorsport Park. For more information go to www.belowthebelt.org.au Following on from the success of the Sydney Pedalthon, we partnered with the Melbourne Racing Club Foundation, along with support from Platinum sponsor Bristol Myers Squibb and Silver sponsor Lendlease to hold the inaugural Melbourne Pedalthon in March 2018. This event was a huge feat with over 30 teams braving the elements to cycle and complete 2120 laps around Sandown Racecourse.

The funds raised will be 100% committed to the Below the Belt Research Fund and we hope to make the Melbourne Pedalthon an annual event that family, friends, medical, community and corporate teams will join.

This publication aims to provide patients and families with information about clinical trials and other ANZUP activities. One such activity that will help you stay connected with ANZUP is the free to join ‘Friends of ANZUP’. This community provides information about the benefits of clinical trials and how to access them, support from people who understand the challenges of below the belt cancers and information about research conducted by ANZUP. Once signed up, you will receive a biannual copy of this publication, ‘A little below the belt’ and invitations to Community Engagement Forums and practical resources.

You can visit the ANZUP website to sign up: https://www.anzup.org.au/friendsofanzup.aspx Reaching our 10th anniversary has only been possible thanks to the hard work and time given by so many. We would not be celebrating this milestone without the generosity and commitment of ANZUP’s Board, Scientific Advisory Committee, Subcommittees, management team and volunteers. The enthusiasm and commitment shown by the entire team means we can carry on supporting the needs of our growing membership and the community, as well as the clinical trials research - and ultimately improve outcomes in bladder, kidney, testicular and prostate cancer.

About clinical trials

What does a clinical trial involve?

ANZUP’s clinical trials are designed to answer scientific questions and find new or better ways to help patients with testicular, kidney, bladder or prostate cancer. The technical explanation of a clinical trial is to work out the effect of some form of intervention on a group of people with a defined condition.

The following examples provide an overview of clinical trials. Perhaps there is a new drug that you have heard will work in cancer. You want to know how safe it is, how often it works and how often it effectively works on treatment for you. Does it make people live longer?

Is it safe? Does it make them feel better? And how does it compare to the treatments that are currently used?

ANZUP has a strong record of successful completion of clinical trials. By performing clinical trials, evidence is generated to improve outcomes for people affected by below the belt cancers. This includes trials that do not involve big blockbuster drugs. For example, in testicular cancer, ANZUP undertook a clinical trial that compared two types of treatments and proved that one way was better than the other.

This is now the standard way this treatment is given around the world 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. You would more than likely be in a trial that is being carried out in major cancer centres throughout Australia and New Zealand. Throughout your trial, 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.

How can I find out more about a trial?

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. You would most likely be referred to a trial by your own doctor or by a doctor who knows your case. Some patients find out about trials from other sources. In any case, you must have a reasonable understanding of your role in the research study and be freely willing to take part in it.

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 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 to be used in a way that is not ordinarily used, or to use a trial drug. If at any time you want to come off the trial, you can. You are not locked in.

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About clinical trials

Clinical trials – ask questions

There are many types of clinical trials. Some involve you having to go to hospital and others can be taken at home, with regular communication with the trial support staff, to make sure everything is going well, and there have been no side effects.

Some other types of clinical trials are not designed to test a specific treatment. Some of the trials involve supportive care questions. In other words, how well patients are managing with their diagnosis of cancer and how we can support them better through the process of treatment and after treatment? In these cases, there are very few visits to the hospital. Some of these trials are done online or over the phone.

If you are thinking about taking part in a clinical trial, here are some important questions to ask: • What is the purpose of the trial?

• W hat does the trial involve? What kinds of tests and treatments? (Find out what is done and how it is done) • W hat is likely to happen to me with or without this new research treatment? How could it affect the cancer?

How could the treatment work?

• W hat are my options and what are their advantages and disadvantages?

• A re there standard treatments for my case and how does the study compare with them?

• How could the trial affect my daily life?

When you see your doctor ask them, ‘Is there a clinical trial that might be suitable for me’? There may not be one available, but if there is, it may be worth considering for your treatment.

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• W hat side effects could I expect from the trial?

(There can also be side effects from standard treatment and from the disease itself) • H ow long will the trial last? Will I need to commit extra time?

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

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

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

• W hat type of long term follow up care is part of the trial?

The journey

Joe’s quest to simplify cancer

JOE A

Joe Bakhmoutski never thought he would have to deal with cancer. Cancer was something that happened to others. When Joe found out that he had testicular cancer, everything was suddenly up in the air. Life seemed so much harder.

It has been a trying time for Joe and his family but with the support of his medical oncologist Dr David Pook, he has worked through the many trials and tribulations that come with cancer. Joe has discovered a new sense of purpose, passion and potential.

‘Losing my testicle, and having chemo and procedures, hammers home what I always knew, but was never forced to confront in a real, tangible way – how fragile and short life is and how I need to make the most of it, on my terms.’

He has immersed himself in knowledge about treatment and side effects and it became a powerful weapon against worry and uncertainty.

Joe believes that we must connect treatment to cutting edge research in order to free patients from the clutches of cancer.

Through his Simplify Cancer podcast, Joe brings together expert advice and survivor insights to help tackle cancer mentally, socially and emotionally.

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Q: How did you discover what you were suffering from was cancer?

A: It has been wrong from the start, like ants in my pants – my undies always too tight; I could never get to sleep properly, hot flushes. Then one night in the shower I felt my testicles and a shudder went through me when I found the lump. It was cold, hard, foreign, and I knew it was serious.

From then on, it all happened quite quickly!

Q: What was your first reaction when you were told you had cancer?

A: I went completely numb. The whole world froze around me, I couldn’t think, it just didn’t add up. Nothing made sense anymore. You think that cancer always happens to somebody else, until it’s your “lucky” turn!

Q: What did you do to help meet the challenges of your treatments?

A: Learning the ins and outs of chemotherapy, of side effects and what things I needed to pay attention to. It gave me confidence in understanding what was going on and whoever I spoke to, there was no need to dumb it down for me, it was incredibly crucial for me to have boundaries around cancer and all the worries around it.

Q: How long were you in treatment? What helped keep your spirits up and gave you support during this period?

A: Apart from procedure to remove my testicle, I went through 9 weeks of BEP chemotherapy. Now if the ANZUP accelerated BEP trial had its way, it could be 6 weeks! But what helped me most was slowing everything down.

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The journey

We live in such a rush that only when something like cancer comes around, do we take the time to stop and soak in the life around you, to stop multitasking and be fully in the moment, in the now, without thinking or, or wandering what’s next, or what you need to get done… When I started to play with my son, I could get completely lost in that, just have tons of fun because you don’t know how much time you’ve got.

Even if there’s no cancer, this time in your life, the now, it’s going to be gone and you never get it back. So I promised myself that I will never take things for granted, that I will never look back on my life and think – where did it all go? Did I leave a mark? Was I fully there with people I truly care about? This made me look at things in an entirely new way, like this shining light pulling me forward!

Q: Where did your idea to create Simply Cancer come from?

A: Despite the support I had, there were times when I felt scared and alone. And having spoken to many cancer patients and survivors, I know that feeling is universal!

So I created a podcast I would want to listen to when I was waiting for my test results, or plugged in for my chemo. Just knowing that there’s a life beyond this!

Q: Did it change along the journey?

JOE BAKHMOUTSKI

A: I want to reach more people through the podcast, through the website, through speaking, to say that you can take the power back from cancer, to find ways to put it in its place in a very positive, powerful way.

Q: Where did you get your ideas for your podcasts?

A: I’m fascinated by stories and whenever I come across something interesting, whether that’s an article, a post, a book, or a speech, or, ideally, a conversation, I want to know more so hearing those stories is what I love! Stories are what make us all come alive, come together and help each other.

Q: You have created all different types of episodes for your podcasts, with different speakers / themes, why is that?

A: We end up with cancer completely unprepared, just lost, so it’s crucial to reorientate yourself in this new reality.

I believe the way to do that is to get different perspectives on cancer, to hear from people and how they are dealing with it, as well as experts who have their own unique perspective. You want to understand their world to find the answers you’re looking for.

I’d say is having trust in your specialist. It needs to be the person you can confide, who’s positive, who is in control.

This person is your guide through what is possibly the toughest time in your life! I was incredibly lucky to have Dr Pook look after me who gave me the confidence that every problem would be taken care of. If you’re not happy with the person looking after you, for whatever reason, find someone else immediately, through your GP! Don’t delay, do it immediately, it’s that important!

Number two is becoming expert on your cancer. Ask your specialist as many questions as you need, because you need to know exactly what’s going on, ask your nurse if you are in a hospital, go to reputable websites like ANZUP Cancer Trials Group and Cancer Council, find an online community that deals with your cancer, do whatever you can to immerse yourself in likely outcomes and treatment. When you do your own research, you can ask more informed questions that can really help you feel more in control.

Third, and this is something I wish I did, is tell your friends, your family, your colleagues. Tell them how they can help you because I found is that you expect people to know what you want, but it’s not always easy. They don’t want to say or do the wrong thing, but they want to help, but they don’t know how, and they need you to guide them.

Send them an email that spells out what you want.

About Simplify Cancer The aim of the Simplify Cancer podcasts is to increase mental strength and resilience in an individual’s battle with cancer.

It’s hard to make sense of it all in your everyday life because it’s always there, at the back of your mind.

Each podcast is designed to equip you with information to support you in your journey. Guests have ranged from cancer fighters and survivors to medical experts. They know what cancer is like firsthand.

To find out more go to http://simplifycancer.com/

Q: Who should listen to your podcasts?

A: Every person whose life has been touched by cancer – if you are dealing with cancer, or building life after cancer, or you have someone you can’t be without.

Q: What three things would you tell a person who only just learned of their cancer diagnosis?

A: Oh boy, where do I start! Number one, JOE AND FAMILY

14 A LITTLE BELOW THE BELT

iTestis: Generating a platform for sustainable testicular cancer research Dr Ben Tran, medical oncologist, Peter MacCallum Cancer Centre and Walter and Eliza Hall Institute of Medical Research, Germ Cell Subcommittee Chair

Testicular cancer is the most common cancer in young men aged 18-39. However, overall, there was only an estimated 815 new diagnoses in 2017, representing only 0.5% of all newly diagnosed cancers in Australia (AIHW Cancer in Australia 2017).

As an uncommon cancer, it can be difficult to accumulate sufficient numbers of patients diagnosed with testicular cancer to generate meaningful research. This has been further accentuated by the decentralisation of cancer treatment in Australia; while this has made it easier for patients to access care closer to home, it has made it more difficult for researchers to track outcomes and conduct research in rarer cancers such as testicular cancer.

Australia has had a very strong record in testicular cancer research, led by Associate Professor Guy Toner and Associate Professor Peter Grimison for many years.

I believe that the key to maintaining this strong record lies in data… and lots of it!

DR BEN TRAN

While databases and registries are often maligned by the academic community, I believe their value is undeniable.

Thanks to an ANZUP Below the Belt Research Fund grant awarded in 2017, my group has been able to develop iTestis, Australia’s first national testicular cancer registry. The aim of iTestis is to prospectively collect detailed data regarding the diagnosis and treatment of Australia’s testicular cancer patients. This always evolving dataset will generate a platform for sustainable testicular cancer research for the foreseeable future.

At the very least, iTestis will describe the current practice patterns amongst Australian doctors and identify deficiencies or abnormalities that can be corrected, to ensure that Australian patients receive the world’s best care, no matter where they are treated.

Once established, iTestis can be used to facilitate both local and multinational research projects, and when linked to tumour tissue, iTestis can facilitate laboratory based translational research which might help to identify why some patients don’t respond to chemotherapy as well as others. This will assist ANZUP and Australia in maintaining a significant presence in testicular cancer on the world stage.

One exciting potential use of iTestis, is to facilitate registry-based randomised controlled trials. Clinical trials can be expensive and subsequently, research that does not involve new drugs are less commonly conducted. For testicular cancer, where the cure rates are already very high, thanks to platinum based chemotherapy, this means very few clinical trials are conducted.

While ANZUP is currently conducting two trials in testicular cancer (P3BEP and TIGER), there is scope for many more clinical trials, as there are numerous questions that need to be answered, in order to optimise the care for testicular cancer patients. However, the cost of conducting such trials is prohibitive. This is where iTestis may be able to help. As iTestis can potentially be used as the data backbone for future randomised trials, thus significantly reducing costs. This approach has already been adopted by other medical specialties, with cardiologists in Sweden using registries to conduct meaningful practice changing randomised clinical trials.

Thanks to ANZUP, iTestis has the potential to generate sustainable research in testicular cancer for the foreseeable future.

A LITTLE BELOW THE BELT 15

Spotlight on testicular cancer 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.

What is testicular cancer?

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.

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 2013, 721 new cases of testicular cancer were diagnosed in Australia. For Australian men, the risk of being diagnosed with testicular cancer by age 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. It is estimated 816 cases of testicular cancer will be diagnosed in 2017 and a further 828 in 2018.

The five-year survival rate for men diagnosed with testicular cancer is close to 98 per cent.

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

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; • p ain or ache in the lower abdomen, the testicle or scrotum; • back pain; • e nlargement or tenderness of the breast tissue (due to hormones created by cancer cells).

Causes of testicular cancer An undescended testicle when 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.

In 2014, there were 23 deaths in Australia from testicular cancer.

For testicular cancer clinical trials go to page 36

Information on Testicular Cancer is derived from Cancer Council Australia https://www.cancercouncil.com.au/testicular-cancer/

16 A LITTLE BELOW THE BELT

‘Billion-dollar molecule’ may extend life in men with prostate cancer

by Jill Margo, Australian Financial Review

Global interest

There is new hope on the horizon for men with endstage prostate cancer who have exhausted all their treatment options.

Australian researchers have shown a highly targeted form of nuclear medicine can reduce their pain, improve their quality of life and in some cases, significantly extend their survival.

The researchers conducted a proof-ofconcept study that was published in the journal Lancet Oncology.

‘IT IS A DISRUPTIVE THERAPY AND HAS THE POTENTIAL TO CHANGE PRACTISE,’ PROFESSOR MICHAEL HOFMAN SAYS OF A PROSTATE CANCER TREATMENT THAT IS BEING STUDIED IN AUSTRALIA. JESSE MARLOW

“In some men, the results are striking,” says Professor Michael Hofman, who led the study at the Peter MacCallum Cancer Centre in Melbourne.

The therapy, called LuPSMA, was developed in Germany where it is used on a compassionate basis.

Although a small number of retrospective case reports or series have previously been published, the Australian study is the first formal assessment of the therapy.

This therapy has two stages. First it locates the cancer spread throughout the body. Then it loads up a molecule with a radioactive payload and sends it into the cancer cells.

The payload is Lutetium 177 and it is loaded into a molecule known as PSMA-617, which opens the door to the cancer cell so it can be destroyed.

Because of the potential of this treatment, the biotech community is now describing PSMA-617 as a “billiondollar molecule”.

After the NASDAQlisted US biotech Endocyte purchased the worldwide rights to this molecule late last year, its share price rocketed from $US1.40. This week it rose over US$11.00 reflecting the global interest in this new approach to treating prostate cancer.

It paid a king’s ransom to the German biotech ABX in a complex deal involving upfront cash, shares, warrants and should it prove successful, milestone payments and royalties.

Endocyte is now planning its own trial in the US and Europe. If successful, it predicts (and hopes) the molecule could have a worldwide market greater than $US1 billion ($1.3 billion) a year.

Australia is planning more trials too.

The one just published involved 30 men for whom no further help was available. To enter the study, they had to have a life expectancy greater than 12 weeks.

While the treatment is not curative, the average survival of all the trial participants was 13 months. This might not seem much but as an average it includes those who passed on quickly and those who are still with us, more than two-and-a-half years after starting the study.

Hofman, a nuclear medicine physician-scientist, says the study aimed to show whether this treatment could halve the level of PSA, prostate specific antigen, which is the blood marker for prostate cancer.

A LITTLE BELOW THE BELT 17

During the first stage of treatment men have a PSMA-PET scan to identify and locate their cancer.

Prostate cancer expresses a unique substance on the surface of each cancer cell. It is called prostate specific membrane antigen or PSMA. For this stage, radioactive substances are labelled to PSMA and injected into a vein.

The substances, gallium-68 or flourine-18, are attracted to and bind strongly to the cancer cells.

They have no killing power but radiate out of the body where they can be detected by the PET scanner.

BEFORE AND AFTER SCANS OF SIX MEN FROM THE STUDY. ON THE LEFT, THE CANCER IS SHOWN IN RED BEFORE TREATMENT. THE RIGHT IS AFTERWARDS.

When PSA is reduced in men with advanced prostate disease, it indicates a reduction in cancer activity.

In the study, PSA was halved in almost 60 per cent of the men. In 20 per cent the response was exceptional with their PSA falling by more than 80 per cent. Whole body scans confirmed these dramatic changes.

‘Rapid relief’

This creates three-dimensional whole-body pictures that can detect prostate cancer clusters as small as a few millimetres in size, which is far more sensitive than CT or MRI. The radiation decays quickly so men are only exposed to a small amount of it, significantly less than a standard CT scan.

Around Australia numerous men with prostate cancer are already having PSMA PET scans to see how much cancer they have and where it is.

‘Seek and destroy’ For the second “seek and destroy” stage, lutetium-177 is labelled to PSMA and injected.

At one extreme, a man had no reduction in his PSA at all.

At the other, a man’s PSA became undetectable and 18 months later, he still has no symptoms and clear scans.

Like tiny, heat-seeking missiles, these molecules look for cells with a high expression of PSMA. They attach to them and become absorbed. Once inside, they unload their radiation. This takes several weeks.

Most men who respond report feeling feel better quite quickly. Overall, there was a 37 per cent reduction in pain with scans showing tumours shrinking in 82 per cent of men.

For about two months men passing through biosecurity radiation monitors at international airports would likely set off the alarms.

“Some men reported the therapy gave them rapid relief from otherwise severe bone pain and that they had more energy for daily tasks and to enjoy family time,” says Hofman.

Hofman says this therapy is exquisitely targeted. Unlike chemotherapy that affects many other parts of the body, it delivers its toxic load directly into prostate cancer cells.

Its main side effects are a dry mouth and eyes but these are usually mild and recover over time.

Unlike external beam radiation, which may radiate a large area damaging adjoining tissues and organs, lutetium enters the cells directly with its high energy “killing” particles only capable of travelling one millimetre, thereby limiting damage to normal tissue.

“It is a disruptive therapy and has the potential to change practise,” he says. “Prostate cancer is a particularly dynamic field and is highly amenable to new technologies. I think it will take off.”

18 A LITTLE BELOW THE BELT

This trial is jointly supported by ANZUP Cancer Trials Group Limited and Prostate Cancer Foundation of Australia.

“Today’s results are clearly very encouraging, and we now want to expand access to other patients not just in the TheraP study, but to patients with earlier stages of prostate cancer, “says Associate Professor Declan Murphy, director of genitourinary oncology, Peter MacCallum Cancer Centre.

“When we see such stunning results in some patients with very advanced cancer, who have exhausted all options, imagine what we might see if we offer this at earlier stages of the disease?

ANSTO’S OPAL REACTOR - ONE REASON AUSTRALIA IS A WORLD LEADER IN THIS AREA IS BECAUSE ANSTO HAS BEEN PRODUCING LUTETIUM-177 FOR SEVERAL YEARS AND SUPPORTS THE LATEST RESEARCH. SUPPLIED

And there was more optimism from an editorial in the Lancet Oncology that carried a headline questioning if this new therapy could be a magic bullet. The Italian editorialists asked whether it could be used earlier in the cancer journey.

While considerably more research was needed to illuminate the road ahead, they said “the first step on this road has now been taken”.

Potential game changer New therapies are often tested on people at the end stage of their disease, where there is nothing to lose.

If these therapies work, they can gradually be moved backwards, one step at a time.

If nuclear medicine for prostate cancer ever reached the first line, along with treatments such as surgery or radiation, it would be a game changer.

Hofman is now leading a new nationwide trial of 200 Australian men approaching the final stages of prostate cancer.

It is taking one step back and will compare lutetium therapy with chemotherapy.

Called the TheraP trial, it recently started recruiting and men can get information about it from their oncologist, urologist or from this link: https://www.anzup.org.au/content. aspx?page=therap

“We have a number of additional lutetium-PSMA studies about to open at Peter Mac, and we are collaborating with others around the country to develop more trials using this therapy in earlier stage disease.

“All eyes are on Australia as we are among the world leaders in this area”.

Optimistic outlook A favourable regulatory environment and the Australian Nuclear Science and Technology Organisation (ANSTO) have helped propel Australia into this leadership position.

ANSTO has been producing lutetium-177 for several years and supports the research.

Mark Moore, general manager at ANSTO Health says LuPSMA’s achievements are remarkable. “We now look forward with great interest and optimism to the results of our Australia-wide TheraP trial.”

He says ANSTO produces a range of nuclear medicines used for diagnosis and treatment of a range of cancers, as well as heart, lung, liver and muscular-skeletal conditions, that one in two Australians need on average in their lifetime.

“ANSTO is proud to partner with the wider clinical community to develop potential new treatment options.”

ANZUP Chair, Professor Ian Davis, says clinical trials like this are the only way we can find out how well new treatments work, whether they are safe “and whether they should become the new gold standard for treatment in the future.”

But despite the heady optimism, this therapy is experimental. It has a long way to go before it finds its place among treatments currently available. *Jill Margo is an adjunct associate professor at the University of NSW

Reproduction of this article approved by Jill Margo and Fairfax http://www.Afr.Com/lifestyle/health/mens-health/billiondollar-molecule-may-extend-life-in-men-with-prostate-cancer-20180507-h0zq1w

A LITTLE BELOW THE BELT 19

800th patient marks ENZARAD prostate cancer trial milestone In June, ANZUP’s global ENZARAD prostate cancer trial reached its recruitment target with the 800th patient enrolled in Adelaide. The landmark moment is the result of four and a half years of hard work by clinicians in Australia, New Zealand, USA, Ireland and the UK to identify and enrol patients to the study.

INTERNATIONAL TRIAL STEERING COMMITTEE

The aim of the trial, which commenced in March 2014, is to determine if treatment with enzalutamide, a new hormone treatment taken as tablets, can improve outcomes for men starting radiation and hormone therapy for aggressive (“high-risk”) prostate cancer that does not seem to have spread beyond the pelvis.

Study Chairs A/Prof Scott Williams and A/Prof Paul Nguyen said recruiting 800 patients seemed a far-off goal four and half years ago.

“Thanks to the dedication of the many clinicians who have spent hours obtaining credentials for their hospital to open the trial, explaining ENZARAD to patients, checking eligibility criteria, A/PROF SCOTT WILLIAMS In previous trials, enzalutamide has carefully developing treatment plans been shown to improve survival and and meticulously collecting follow-up quality of life in men with prostate cancer that has data; we are delighted that goal is now a reality,” stopped responding to standard hormone treatments A/Prof Williams said. and chemotherapy.

“We are deeply grateful to the many healthcare Although it is too early for results of this large-scale professionals, patients and their families who have put randomised trial to be known, reaching the recruitment in so much effort to make sure this question could be target is a significant step towards improving cure rates asked and properly answered.” for men with high-risk prostate cancer.

The trial was led from Australia by ANZUP in With recruitment now closed, the trial moves into the collaboration with the Dana-Farber Cancer Institute, follow up phase with patients continuing treatment and Cancer Trials Ireland, European Organisation for close monitoring.

Research and Treatment of Cancer (EORTC) and the NHMRC Clinical Trials Centre.

20 A LITTLE BELOW THE BELT

Medicare funding for prostate cancer

Following on from the federal budget announcement, tens of thousands of men will be able to get a Medicare funded MRI to check if they have prostate cancer.

A new $400 Medicare rebate will be made available for scans to diagnose and monitor prostate cancer, and potentially revolutionise prostate cancer care by reducing the number of diagnostic biopsies that can leave men with dangerous infections and other troubling side effects including infection, bleeding and urinary obstruction.

Men who undergo surgery or radiation treatment for prostate cancer are at risk of long term adverse outcomes including urinary incontinence, erectile dysfunction and bowel urgency.

If low risk cancers can be monitored by MRI instead these risks will be avoided.

Instead of having a biopsy to check if they have cancer men with elevated levels of Prostate Specific Antigen (PSA) in their blood will be able to have a simple MRI scan to determine whether they have cancer.

This means men who decide against prostate cancer surgery and opt to have their prostate cancer put under active surveillance, will for the first time, be able to have an annual MRI to check if it is becoming more dangerous.

Malcolm Freame, Chief Operating Officer of Prostate Cancer Foundation of Australia (PCFA), says that this will be a financial advantage to men paying the full cost of the scans themselves. “The announcement will benefit thousands of men every year. In addition, it will change prostate cancer care by reducing the number of biopsies that can leave men with infections and other unpleasant side effects.�

MRI scans have been greatly improved with recent new technology, known as multiparametric MRI which is better at detecting clinically significant tumours than biopsy.

The decision is likely to be a real benefit to the one in five men who have clinically insignificant slow growing cancer because they will avoid overtreatment of their disease which can be monitored now by MRI.

A LITTLE BELOW THE BELT 21

Spotlight on prostate cancer

What is prostate cancer?

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.

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.

Prostate cancer symptoms The symptoms can include: • 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:

In 2017, it is estimated 16,655 new cases of prostate cancer will be diagnosed in Australia.

• age, increasing greatly if you are aged over 50 years;

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.

• a diet high in fats and low in fresh fruit and vegetables;

In 2014, there were 3,102 deaths from prostate cancer in Australia. In 2017, it is estimated this will increase to 3,452 deaths.

• family history of prostate, breast or ovarian cancer;

• m en of African descent are at higher risk than men of European or Asian descent; • high testosterone levels.

For prostate cancer clinical trials go to page 41

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

22 A LITTLE BELOW THE BELT

The journey

The International Kidney Cancer Coalition, Annual Conference ‘Expanding Circles’

By Belinda Jago, CAP Chair

The International Kidney Cancer Coalition (IKCC) is a global collaboration of patient organisations, whose role is to empower and represent the kidney cancer community through advocacy, awareness, information and research.

IKCC 8th international conference for kidney cancer patient organisations was held in Mexico City from 12-14 April 2018. The conference provides an opportunity for patient organisations from around the world to hear the latest information regarding the diagnosis, treatment and management of kidney cancer. The conference also allows patient organisations to share best practices, exchange experiences and work with us to reduce the global burden of kidney cancer.

BELINDA JAGO PRESENTING

debilitating side effects, and most significantly that no clinical trials are available until you turn 18.

Other challenges for families (which we faced) was special access programs, how to manage working and caring for your child, and then trying to keep life as normal as possible. Discussion on end of life issues when the cancer won’t go away.

It is hard to convey your family’s experience, managing and juggling daily life, but speaking about the issues faced can be a comfort to others in a similar position.

They will then realise they are not alone...

I was delighted to be invited to speak at this conference. My first presentation focused on the unique challenges faced by an adolescent and young adult (AYA) diagnosed with a very rare kidney cancer. I had experienced this as I lost my daughter Bec from the disease at only 19 years of age. There was a lot to cover about navigating the medical system with a child whose treatment is only available in an adult hospital. I also discussed working with AYA specialists/support groups to seek assistance around fertility, education and family support for siblings as your world is turned upside down. There was also a need to highlight the challenges for treatment choices or lack of, management of treatments and the

The session was concluded with one of Bec’s diary entries, which gave insight into her experience as a young adult, who knew their end was near, but felt positive and supported by a loving family and compassionate treatment team.

It is hard to convey your family’s experience, managing and juggling daily life, but speaking about the issues faced can be a comfort to others in a similar position. They will then realise they are not alone when dealing with the many issues faced by AYA’s. By sharing experiences, fund raising, raising awareness and being a patient advocate we can help others.

The second presentation I gave was a panel session with 4 other speakers discussing ‘How patients can make an impact in kidney cancer’. My focus was on patient engagement in clinical trials. It was great to talk about my role as chair on the ANZUP Consumer Advisory Panel (CAP), and how ANZUP engages with the CAP to provide the patient/consumer perspective on the research activities being undertaken by the ANZUP membership.

A LITTLE BELOW THE BELT 23

The journey

The ANZUP CAP benefits from being engaged at all levels of research from ideas presented at concept development workshops through to trial management committees once a trial has opened. This has been made possible through the commitment of the ANZUP Board and the CEO Margaret McJannett, who believes that the consumer input into research is invaluable.

The presentation was well received and the way we are engaged at ANZUP was noted as an excellent model of patient/consumer engagement.

This conference provided a unique life experience as it brought together over 50 kidney cancer patient advocates from 25 countries and 6 continents and was supported by the attendance of a fantastic medical advisory board. When my daughter was diagnosed with kidney cancer in 2008 I had met many of the patient advocates online through social media and networking while looking for information and support. Meeting face to face after 12 years was truly a not to be forgotten and emotional experience.

There was time for networking, a few margaritas, and a day’s sightseeing around Mexico City before the return journey home. I left knowing I had met many more wonderful patient advocates from around the world who share a passion to make a difference for kidney cancer patients and their families.

Make a difference with ANZUP

DANNY HENG AND DEB MASKENS

MICHAEL JEWETT, CANADIAN UROLOGIST

We need your help to improve outcomes for people affected by these below the belt (prostate, testicular, 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 https://www.anzup.org.au/content.aspx?page=donations

24 A LITTLE BELOW THE BELT

Spotlight on kidney cancer What is kidney cancer?

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.

Each year more than 3000 Australians are diagnosed with kidney cancer. It makes up about 2.5% of all cancers in Australia. 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.

In 2013, there were 3,059 new cases of kidney cancer diagnosed in Australia (1,987 males and 1,071 females).

In 2017, it is estimated that 3,512 new cases of kidney cancer will be diagnosed in Australia (2,256 males and 1,256 females).

In 2014, there were 920 deaths resulting from kidney cancer in Australia (574 males and 346 females). In 2017, it is estimated that this will increase to 1,049 deaths from kidney cancer (681 males and 368 females).

The five-year survival rate for Australians diagnosed with kidney cancer is 75 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.

Causes of kidney cancer The causes of kidney cancer are not known, but factors that put some people at higher risk are: • Obesity – Excess body fat may alter certain hormones that can lead to kidney cancer.

• Smoking – 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.

• High blood pressure – Whether it is caused by another medical condition or due to being overweight, high blood pressure increases the risk of kidney cancer.

• Kidney failure – People with end-stage kidney disease have an increased risk of developing kidney cancer.

• Family history – People who have family members with kidney cancer, especially a sibling, are at a greater risk.

• Inherited 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.

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; • fever not caused by a cold or flu.

For kidney cancer clinical trials go to page 38

Information on Kidney Cancer is derived from Cancer Council Australia https://www.cancercouncil.com.au/kidney-cancer/

A LITTLE BELOW THE BELT 25

Concept Development Workshops ANZUP is dedicated to looking ahead to identify areas of critical need as well as new opportunities for improving outcomes for below the belt cancers.

It is vital we build relationships with the clinicians and scientists of today and tomorrow and ensure ANZUP’s clinical trial program spans the spectrum of all below the belt cancers.

ANZUP began face-to-face Concept Development Workshops (CDWs) in 2015 to develop active clinical trials in all disease types but also to foster connections with our members. The CDWs are designed to facilitate and support members who actively contribute across our research activities who have an idea/concept they would like to put forward for discussion and, if supported, to further develop into a future grant application. ANZUP also encourages emerging researchers, trainees and recent graduate members to attend the workshop(s) as an educational opportunity.

Furthermore, if a grant application is approved then that particular project can move ahead to investigate the concept and then ultimately take a successful idea to the point of becoming a full scale study.

The workshops include the four disease specific subcommittees, i.e., prostate, kidney, bladder and testicular and are open to any of the multidisciplinary membership to attend. Concepts are presented at the workshops where they are discussed and the ideas are refined. The workshops are also used to brainstorm new ideas, review the current trials and treatment landscapes and discuss how that particular field might develop over the next few years.

ANZUP has a wide pipeline of concepts coming through the subcommittees for further refinement and ANZUP is in a position to help support the research activity necessary to investigate the concepts. This is made possible through the Below the Belt Research Fund.

Summary of CDWs 2016-18

Total number of CDWs

2016 2017 2018 4 4 4

Total number of attendees 85 98 104 Total number of concepts presented

29 22 29

ANZUP’s major fundraising event, the Below the Belt Pedalthon, directs 100% of funds raised to support successful grant submissions. The findings of the projects aim to inform future ANZUP trials.

In 2017 seven grant recipients were awarded. The study concepts are extremely varied and some of these include: • the development of a multi-disciplinary, web-based testicular cancer database to give an accurate overview of current Australian practices and facilitate research (read more on page 15); • trialling of testosterone injections for metastatic prostate cancer patients; • development of a personalised web-based exercise support program for men with metastatic prostate cancer; • and the establishment of Australia’s first national database to analyse treatment and outcomes for patients having bladder removal.

PROSTATE CANCER CONCEPT DEVELOPMENT WORKSHOP

“This year, encouraged by senior colleagues, I attended the ANZUP Concept Development Workshops (CDW) for the Renal Cancer and Prostate Cancer subcommittees. What an experience! Never have I encountered such a fantastic gathering of great minds across so many diverse disciplines, all driven by the singular mission of improving the lives of patients affected by urogenital cancers through clinical trials.”

Dr Edmond Kwan, medical oncologist

26 A LITTLE BELOW THE BELT

A world first trial for bladder cancer

By Associate Professor Andrew Weickhardt, medical oncologist, Olivia Newton John Cancer Centre, Austin Hospital

There have been some exciting developments in the treatment of metastatic bladder cancer harnessing the body’s own immune system using a new class of drugs called “PD1 inhibitors”.

These drugs activate the immune system to better identify cancer cells, and in some patients have led to very impressive shrinkages of cancer.

time as radiation to the bladder. Yet 1 in 3 patients treated this way still have a relapse of their cancer.

Potentially giving a PD1 inhibitor at the same time may activate the body’s immune system to fight the cancer at the same time as radiation and chemotherapy.

ANZUP has commenced a world first trial combining a new PD1 inhibitor pembrolizumab with chemotherapy and radiation to increase the success rate of the treatment. By recruiting 30 patients at 7 different hospitals within Australia, doctors hope to demonstrate that the combination therapy is safe, well tolerated and better than chemoradiation alone. ANZUP is committed to running innovative clinical trials that increase the cure rate for genitourinary cancers such as bladder cancer.

DO YOU HAVE A STORY YOU COULD SHARE WITH OTHERS?

To date these new drugs have been tried only in metastatic bladder cancer – and are likely to be approved in the coming years based on very robust and impressive trial results. To date there is little data on how effective these drugs are when the cancer is confined to the bladder.

If you or a member of your family would like to know more about the ANZUP led PCR MIB clinical trial, please discuss this with your GP or specialist.

In some patients the bladder cancer may spread within the bladder wall but not more widely. These patients may be cured with chemotherapy given at the same

You can also contact ANZUP on 02 9562 5042 or refer to the website www.anzup.org.au and search under trial information.

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

DO YOU HAVE A STORY YOU COULD SHARE WITH OTHERS?

Telehealth a revolution in health care Share your story with us here anzup@anzup.org.au Create awareness and let others know they are not alone.

FIGHT CANCER

Associate Professor Nick Brooks is a Urologist based at the University of Adelaide, and Consultant Urologist and Director or Urological Cancer at the Royal Adelaide Hospital.

He is also a member of ANZUP and with Dr Rajiv Singal has granted permission for this article to be reproduced. It appeared on Associate Professor Brooks’ blog www.nickbrookurogology.com

BELOW THE BELT Video consults for distant patients offer many advantages for those who live long distances from their specialists.

This article is written by Nick Brook and Rajiv Singal, and covers many of the issues for this exciting development in healthcare.

Primarily, this disparity relates to the practicalities and

economics of provision of comprehensive health care in • T E S T I C U L A R • P R O S TAT E • B L A D D ER Nunique E Yto Australia.

• remote areas,• and isK

by InoD means

Share your story with us here anzup@anzup.org.au 14 A LITTLE BELOW THE BELT Create awareness and let others know they are not alone

What is Video Telehealth?

There is nothing clever about Telehealth, and it is remarkable that uptake has been so slow. The technology, as voiceover-internet protocol (VIOP), has been available for a long time - Skype was released 11 years ago. Telehealth simply uses similar or identical technology to link doctors and other

In Canada, 80% of the population lives within 150 km of the US border. With borders that extend past the Arctic circle, the needs of small isolated communities become obvious. Travelling great distances can also be hindered by unpredictable, harsh weather during the winter months.

A LITTLE BELOW THE BELT 27

South Australia is a stand out example of how and why Telehealth can help distant patients. SA has a population of only 1.67m. The Australian Bureau of Statistics give the

Spotlight on bladder cancer Bladder cancer is said to be the fourth most common cancer in Australian men, and about 3000 Australian men and women are diagnosed with bladder cancer each year

What is bladder cancer?

Bladder cancer can be described as abnormal cells in the bladder growing and dividing in an uncontrolled manner.

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

Other less common symptoms include: • problems emptying the bladder;

Bladder cancer takes different forms:

• a burning feeling when passing urine;

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

• back pain or lower abdominal pain

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

• need to pass urine often;

Causes of bladder cancer Some factors that can increase your risk of bladder cancer include: • smoking;

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

• diabetes;

The stats

• workplace exposure to certain chemicals used in dyeing in the textile, petrochemical and rubber industries;

In 2013, there were 2555 new cases of bladder cancer diagnosed in Australia. Bladder cancer is common in people aged over 60 and is significantly more common in men than in women.

• family history;

• use of the chemotherapy drug cyclophosphamide; • chronic inflammation of the bladder.

In 2017 it is believed 2995 cases of bladder cancer will be diagnosed in men and women combined. This will increase to 3,084 in 2018.

In 2014, there were 1040 deaths caused by bladder cancer in Australia. The five-year survival rate for Australians with bladder cancer is 53 per cent.

For men, the chance of developing bladder cancer is about 1 in 110, making it one of the top 10 most common cancers in men.

For bladder cancer clinical trials go to page 33

Footnote: Information on Bladder Cancer is derived from Cancer Council Australia http://www.cancer.org.au/about-cancer/types-of-cancer/bladder-cancer.html

28 A LITTLE BELOW THE BELT

Exercise in cancer care In Australia someone is diagnosed with cancer every four minutes. Every one of those patients would benefit from exercise but only one in ten will exercise enough during and after their cancer treatment.

Why? Research now shows that exercise greatly benefits cancer patients. Cancer patients who regularly exercise experience less severe and fewer side effects from treatments. They can also reduce the physical deteriorations caused by cancer, combat fatigue, relieve mental distress and improve quality of life.

Cancer patients who regularly exercise may also have a lower relative risk of cancer recurrence and of dying from cancer. (Please use this link for further information https://theconversation.com/every-cancer-patientshould-be-prescribed-exercise-medicine-95440) A group of Australian cancer experts have now launched a position statement calling for exercise to be prescribed to all cancer patients as part of their routine treatment.

The Clinical Oncology Society of Australia (COSA) has prepared the Exercise in Cancer Care paper, which states doctors should prescribe particular exercise regimes and refer patients to exercise specialists with experience in cancer care. That is, exercise should be prescribed to all cancer patients as part of their routine treatment.

The statement has been endorsed by more than 25 health organisations, including ANZUP, Cancer Council and Peter MacCallum Cancer Centre. A COSA report on the subject has been published in the Medical Journal of Australia.

The COSA statement finds most cancer patients do not meet exercise recommendations. The level of exercise outlined in the statement includes: • A t least 150 minutes of moderate intensity or 75 minutes of vigorous-intensity aerobic exercise (e.g. swimming, cycling, walking, jogging) each week; and, • T wo to three resistance exercise (i.e. lifting weights) sessions each week encompassing moderate to vigorous-intensity exercises targeting the main muscle groups.

When correctly prescribed and managed, exercise is safe for people with cancer and the risk of complications is moderately small.

ANZUP is fully committed to providing better outcomes for cancer patients and this includes investigating exercise in cancer treatment. Through the Below the Belt Research Fund two grant recipients are further exploring the importance and value of exercise in cancer care.

A LITTLE BELOW THE BELT 29

Dr Camille Short from the University of Adelaide is currently exploring: Delivering personalised and evidence-based exercise support to men with metastatic prostate cancer via the internet. A pilot randomised clinical trial examining intervention impact on behaviour change and quality of life.

This research recognises that both physical activity and psychological support can greatly improve quality of life for men with metastatic prostate cancer. Although it is suggested men are more likely to follow physical activity guidelines than use psychological support, traditional supervised exercise is often unavailable and/or underutilised. It is important physical activity is accessible and affordable, but also individualised, evidence-based and safe. This study will provide personalised physical activity advice through an innovative web-based platform. It will be evaluated to ensure it works as intended and is well received by users and has the potential for significant impact through increased reach and uptake.

While there are some face-to-face programs available, many men live too far away, are too unwell or lack

30 A LITTLE BELOW THE BELT

funds to attend face-to-face sessions, especially on an ongoing basis. Our research team, which consists of experts in prostate cancer, exercise physiology, psychology, medicine and telehealth is well placed to develop an alternative support system that will be available to men with metastatic disease via the internet.

Once the website is developed the next step will be to conduct preliminary research to ensure it works as intended and is well received by the initial users.

Professor Dennis Taaffe, Edith Cowan University is researching: Exercise medicine prior to open radical cystectomy.

Feasibility and preliminary efficacy Bladder removal surgery as a treatment for bladder cancer is associated with high complication and hospital readmission rates, as well as significant risk of morbidity and mortality. This risk is increased for patients with poor physical fitness or overall function. This study will test the benefits of a supervised four-week presurgery strength and aerobic exercise program in improving post-surgery outcomes and quality of life.

It is the first Australian study to test the feasibility and preliminary effectiveness of pre-surgical exercise with opportunities to then proceed to a larger multicentre Phase III trial.

Innovation and Education

ANZUP JOINS WITH OTHER COLLABORATIVE TRIALS GROUPS FOR AN AFTERNOON TEA CELEBRATING INTERNATIONAL CLINICAL TRIALS DAY

International Clinical Trials Day The 20th May celebrates International Clinical Trials Day. A day we acknowledge the major improvements in health outcomes, driven by dedicated clinicians who endeavour to find answers to important clinical questions and community members who participate in clinical trials.

In Australia, clinical trials benefit Australian patients because they allow faster access to new treatments.

They also bring health professionals together to deliver better care for patients, while scientists, doctors, nurses and specialists also benefit through exposure to the very latest treatment methods.

Most people think of James Lind as the father of clinical trials, since he was the first to introduce control groups into his experiments. In this manner, he documented the fact that citrus fruits in the diet could prevent scurvy. Lind carried out trials while at sea on board the Salisbury in 1747. All scurvy patients were given the same general diet but supplemented with various additional items, including cider, elixir vitriol, vinegar, seawater, nutmeg and (crucially) oranges and lemons. In just six days, those patients taking citrus fruits were fit for duty.

Clinical trials have evolved into a procedure, focusing on patient safety and requiring informed consent from all participants. There will always be a balance between medical progress and patient safety, and the regulation of clinical trials helps to ensure that this balance is acceptable.

Thank you ANZUP members for your dedication to find answers and to all patients who participate in clinical trials, in order to improve outcomes for themselves and those affected by testicular, bladder, kidney and prostate cancer.

Clinical trial awareness campaign

The clinical trials awareness campaign aims to:

ANZUP Cancer Trials Group are delighted to partner with Breast Cancer Trials with raising awareness of clinical trials in the community and gratefully acknowledge the generous support of Tonic Health Media.The clinical trial awareness campaign will be disseminated in GP clinics around Australia.

• Increase patient referral and recruitment to clinical trials

• Increase consumer understanding of the importance of clinical trials for cancer patients, families and members of the public who have never been touched by cancer

• Increase public awareness and understanding of ANZUP and BCT’s work If you are sitting in your local GP clinic, look out for our campaign and let us know what you think?

A LITTLE BELOW THE BELT 31

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

ANZUP Trial

ANZUP Trials

l BCG + MM Trial

l P3 BEP

l Pain Free TRUS B

l PCR MIB

l TheraP

Co-badged Trial

Co-badged Trial

l e-TC 2.0

l NMBIC-SI

Kidney cancer ANZUP Trials l K EYPAD

l ENZAMET

l UNISoN

l ENZARAD

Co-badged Trial l FASTRACK II

32 A LITTLE BELOW THE BELT

Trials now closed to recruitment

l BL12

Current ANZUP trials

Bladder Cancer BCG + MM Trial

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 per cent of people with high-risk tumours, despite best current treatment.

Recent preliminary studies show promising results from adding MM (mitomycin), a chemotherapy drug, to current treatment with BCG (bacillus calmette-guerin – 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 cost-effective treatment for patients who suffer from this cancer. It is anticipated that 500 patients will be enrolled in the study in Australia and New Zealand. To date 164 patients have been recruited from 13 sites.

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://www.anzup.org. au/content.aspx?page=trials-bcgmmc

Current site locations for the BCG + MM trial: NSW • Concord Repatriation General Hospital • Northern Cancer Institute • Southside Cancer Care Centre • Sydney Adventist Hospital Clinical Trials Unit • The Tweed Hospital • Westmead Hospital VIC • Austin Hospital • Epworth HealthCare (Richmond) • Footscray Hospital • Frankston Hospital • Royal Melbourne Hospital • The Alfred Hospital WA • Fiona Stanley Hospital

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. We acknowledge Omegapharm and Merck Sharp & Dohme for providing study drugs.

A LITTLE BELOW THE BELT 33

Current ANZUP trials

Bladder Cancer PCR MIB Trial

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.

Current site locations for the PCR MIB ANZUP clinical trial:

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.

VIC

It is expected that it will take two years to accrue the required 30 patients. To date, we have four sites 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://www.anzup.org.au/ content.aspx?page=bladdercancertrialdetails

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NSW • Prince of Wales Hospital • Chris O’Brien Lifehouse

• Austin Hospital WA • Sir Charles Gairdner Hospital

Current Current ANZUP trials ANZUP trials

Bladder Cancer Co-badged trial NMIBC-SI Evaluation

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.

Current site locations for the NMIBC-SI trial:

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

• Monash Medical Centre - Clayton

• 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.

NSW • Concord Hospital • Royal North Shore Hospital • Westmead Hospital • Westmead Specialist Centre VIC • Austin Hospital • Royal Melbourne Hospital WA • Fiona Stanley Hospital QLD • Mater Hospital Brisbane

• 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 that it is fit for purpose in clinical research.

Field Test 1 is now closed to recruiting and the data is being analysed. Field Test 2 began in June 2018. 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://www.anzup.org.au/content. aspx?page=bladdercancertrialdetails ANZUP collaborates with Cancer Australia and Cancer Council NSW. This study is being sponsored by the University of Sydney.

A LITTLE BELOW THE BELT 35

Current ANZUP trials

Testicular Cancer Testicular Cancer/Germ Cell* Tumours PHASE III Accelerated BEP Trial

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.

ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC).

The purpose of this study is to determine whether giving the same dose of BEP on a two-weekly schedule will be more effective than a three-weekly schedule, and will be well tolerated. The two-weekly schedule is called “accelerated BEP” and the three-weekly schedule is called “standard BEP”.

NSW

This ANZUP investigator initiated study is being funded by Cancer Australia Current site locations for the P3BEP ANZUP clinical trial:

• 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

Up to 500 patients will be enrolled in the study in Australia, New Zealand and other countries.

Currently we have 25 sites open in Australia and New Zealand, and 46 patients enrolled. We have also set up the trial in Ireland with the support of Cancer Trials Ireland and the Medical Research Council, Cambridge University, UK.

• SAN Clinical Trials Unit

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

SA

For more information, please go to the trials page on the ANZUP website: https://anzup.org.au/content. aspx?page=testicularcancer trialdetails

36 A LITTLE BELOW THE BELT

• The Tweed 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 UK • Addenbrooke’s Hospital • B eatson West of Scotland Cancer Centre • Bristol University Hospital

• Westmead Hospital

• C ambridge University Hospital Paediatric

QLD

• Royal Preston Hospital

• Princess Alexandra Hospital • Royal Brisbane & Women’s Hospital

• Flinders Medical Centre • Royal Adelaide Hospital TAS • Royal Hobart Hospital

• Velindre Hospital ANZUP has been awarded funding from the Sydney Catalyst Translational Cancer Research Centre for the Phase III Accelerated BEP translational sub-study. This will involve the collection of blood and tissue.

Current Current ANZUP trials ANZUP trials

Testicular Cancer Co-badged trial e-TC 2.0

About one in five men feel stressed or down after finishing treatment for testicular cancer, but few seek help for this. That’s why 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 will be recruited through clinicians at participating centres and online via search engine and social media advertising.

Current site locations for the e-TC 2.0 trial: NSW • Chris O’Brien Lifehouse • Concord Repatriation General Hospital • Northern Cancer Institute • Royal North Shore Hospital VIC • Monash Cancer Centre • Peter MacCallum Cancer Centre

Men who fulfil the study eligibility criteria will be given access to the e-TC website and will complete brief questionnaires asking how they are feeling and their satisfaction with the website as they work through it.

In addition, participants’ psychological distress, quality of life and supportive care needs will also be assessed prior to accessing the e-TC website and again after 12 and 24 weeks of access.

This study is currently active and recruiting. For more information, please go to the trials page on the ANZUP website: https://anzup.org.au/content.aspx?page=etc2.0patienttrialinformation If you are interested in being involved or would like to find out more about the study, please visit: e-TC.org

A LITTLE BELOW THE BELT 37

Current ANZUP trials

Kidney Cancer KEYPAD

Renal cell carcinoma (RCC) is the 9th most common cancer in Australia, 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, in partnership with MSD and Amgen.

This study is currently active and recruiting. To date 10 sites have been activated in Australia with further sites to be added.

This study is currently active and recruiting. For more information, please go to the trials page on the ANZUP website: https://www.anzup.org.au/content. aspx?page=kidneycancerfastrackiitrial

38 A LITTLE BELOW THE BELT

Current site locations for the KEYPAD ANZUP clinical trial: NSW • Calvary Mater Newcastle • Concord Repatriation Hospital • Northern Cancer Institute • St George Hospital QLD • ICON Cancer Care • Royal Brisbane & Women’s Hospital VIC • Box Hill Hospital • Monash Health • Peter MacCallum Cancer Centre SA • Flinders Medical Centre

Current ANZUP trials

Kidney Cancer UNISoN

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 we will find out 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). We will 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.

Current site locations for the UNISoN trial: 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

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 hope to help people with this rare disease.

• Westmead Hospital

This study is currently active and recruiting. To date 19 sites have been activated in Australia with further sites to be added.

• Flinders Medical Centre

VIC • Ballarat Oncology & Haematology Service • Box Hill Hospital • Monash Health - Clayton SA • Adelaide Hospital/ Ashford Cancer Centre Research

QLD • Royal Brisbane and Women’s Hospital • Sunshine Coast University Hospital WA • Fiona Stanley Hospital We acknowledge BMS for providing the study drug.

For more information, please go to the trials page on the ANZUP website: https://www.anzup.org.au/ content.aspx?page=kidneycancerfastrackiitrial

A LITTLE BELOW THE BELT 39

Current ANZUP trials

Kidney Cancer Co-badged trial FASTRACK II 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.

Current site locations for the FASTRACK II trial: NSW • Calvary Mater Newcastle • Royal North Shore Hospital VIC • Peter MacCallum Cancer Centre • The Alfred (William Buckland Radiation Centre) SA

This study is currently active and recruiting. To date 7 sites have been activated in Australia and New Zealand, with 27 patients recruited.

For more information, please go to the trials page on the ANZUP website: https://www.anzup.org.au/ content.aspx?page=kidneycancerfastrackiitrial ANZUP collaborates with the Trans-Tasman Radiation Oncology Group (TROG).

40 A LITTLE BELOW THE BELT

• Royal Adelaide Hospital QLD • Princess Alexandra Hospital • Royal Brisbane and Women’s Hospital

Current ANZUP trials

Prostate Cancer ENZARAD

Prostate cancer is often treated with powerful X-rays (radiotherapy) instead of surgery. The reasons for choosing radiotherapy or surgery are complex, and are the focus of a discussion that men should have with their treating doctors. We will specifically look at men whose cancers have higher risk of returning after treatment but have not yet shown any evidence of spread outside the prostate. In this situation we are aiming for a cure, if possible, and the evidence shows that this is more likely when radiotherapy is combined with hormone treatment. This treatment is called Androgen Deprivation Therapy (ADT). ADT is often in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) and combined with tablets called anti-androgens. Enzalutamide is a new and stronger anti-androgen that has also been shown to work against prostate cancers that are resistant to other anti-androgens.

Clinical Trials Centre (NHMRC CTC) and the Trans-Tasman Radiation Oncology Group (TROG)

ENZARAD is a clinical trial for men with this type of prostate cancer where a decision has been made that radiotherapy is the best treatment. This trial is for those who, after discussion with their specialists, were not recommended for radical prostatectomy due to their pathology or comorbidities. Men who have both testes removed also will not be eligible. The purpose of the ENZARAD trial is to find out if the addition of enzalutamide to radiotherapy, plus ADT, will increase survival in men with a prostate cancer apparently confined to the prostate but at high risk of return elsewhere.

• Genesis Cancer Care - Newcastle

It is an international trial run by ANZUP in multiple centres in Australia, New Zealand, Canada, Ireland and the UK. The aim is to have 800 participants from these countries. Participants will stay on the study drug until there is evidence of progression, and will be followed for a minimum of 3.5 years from entering the trial.

• Tamworth Hospital

The recruitment target of 800 patients was reached on 2nd June 2018 with the trial closing to recruitment at the end of June 2018. The trial will then move to follow-up.

• Genesis Cancer Care QLD - Tugun and Southport

Please speak with your doctor if this is of interest to you or someone you know.

• Oncology Research Australia, Toowoomba Hospital

For more information please go to the trials page on the ANZUP website: https://anzup.org.au/content. aspx?page=prostatecancertrialdetails ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council

These ANZUP investigator initiated studies are being financially supported by Astellas, who are also providing enzalutamide.

Current site locations for the ENARAD ANZUP TROG Clinical Trial: NSW • Blacktown Hospital • Calvary Mater Newcastle • Campbelltown Hospital • Central West Cancer Services • Chris O’Brien Lifehouse

• Gosford Hospital • Liverpool hospital • Prince of Wales Hospital • Royal North Shore Hospital • St George Hospital • St Vincent’s Hospital - Sydney • Sydney Adventist Hospital

• Westmead Hospital • Wollongong Hospital QLD

• Genesis Cancer Care QLD - Wesley and Chermside • Nambour General Hospital

• Princess Alexandra Hospital Brisbane • Radiation Oncology Centre - Gold Coast • Radiation Oncology Services - Mater Adult Hospital • Royal Brisbane & Womens hospital • Townsville Hospital

A LITTLE BELOW THE BELT 41

Current ANZUP trials

SA

USA

• Ashford Care Research (Adelaide Radiotherapy Centre)

• Beth Israel Deaconess Medical Center (BIDMC)

• Flinders Medical Center and RGH

• Dana Farber Cancer Institute

• Royal Adelaide Hospital

UK

TAS

• Addenbrookes Hospital

• Royal Hobart Hospital

• Charing Cross Hospital

VIC • Austin Hospital • Box Hill (Eastern Health) • Epping Radiation Oncology Centre • Epworth Healthcare - Richmond • Frankston Radiation Oncology Centre • Peter MacCallum Cancer Centre (Bendigo) • Peter MacCallum Cancer Centre (East Melbourne) • Peter MacCallum Cancer Centre (Moorabbin Campus)

• Guys and St Thomas Hospital • Kent & Canterbury Hospital • Nottingham City Hospital - City Campus • Royal Marsden Hospital • Royal United Hospital Bath • University Hospital Southampton • University of London Hospital • Velindre Cancer Centre • Western General Hospital

• Ringwood Radiation Oncology Centre

Austria

• Sunshine Hospital

• University Hospital (Landeskliniken) Salzburg

• Western Radiation Oncology Centre Footscray WA • Fiona Stanley Hospital New Zealand • Auckland Hospital • Christchurch Hospital • Palmerston North Hospital Ireland

Belgium • AZ Groeninge Kortrijk - Campus Kennedylaan Slovenia • The Institute of Oncology Ljubljan Spain • Catalan Institute of Oncology (ICO) Badalona • Hospital Universitario de Salamanca • Hospital Donostia

• Beacon Private Hospital Dublin • Cork University Hospital • Galway University Hospital • Mater Misericordiae University Hospital • Mater Private Hospital • St. Lukes Hospital

42 A LITTLE BELOW THE BELT

This trial will close for recruitment as at 30 June 2018.

Please see page 20 for more information on the ENZARAD trial.

Current ANZUP trials

Prostate Cancer Pain Free TRUS B

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.

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.

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 • Tauranga Urology Research

This study will include 420 men. Currently we have active sites across Australia and New Zealand with 221 patients participating.

ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHRMC CTC).

This trial is open and recruiting. If you are interested in participating in the trial, please refer to https://anzup.org.au/content. aspx?page=prostatecancertrialdetails This ANZUP investigator initiated study is being funded by Cancer Australia. We acknowledge MDI for providing the study drug.

A LITTLE BELOW THE BELT 43

Current ANZUP trials

Prostate Cancer 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.

This trial is open and recruiting. If you are interested in participating in the trial, please refer to https://www.anzup.org.au/content. aspx?page=lutetiumprostatecancertrial 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, It’s a Bloke Thing, Movember and CAN4CANCER.

44 A LITTLE BELOW THE BELT

Current locations for the TheraP trial: NSW • Liverpool Hospital • St Vincent’s Hospital VIC • M onash Medical Centre – Moorabbin of Monash Health • Peter MacCallum Cancer Centre QLD • Royal Brisbane and Women’s Hospital SA • Royal Adelaide Hospital

Join us for the Sydney Pedalthon Riding 4 hours to defeat prostate, testicular, bladder & kidney cancers The 2018 teams are lining up – will you be joining us?

We extend an invitation to all cyclists, colleagues, family and friends to join us for an action packed day at Sydney Motorsport Park.

Over 1,200 riders have now cycled and fundraised for the Below the Belt Research Fund. The Pedalthon is now in its 5th year and was founded to promote awareness of the below the belt – prostate, testicular, bladder and kidney – cancers.

100% of all funds raised go straight into the hands of ANZUP clinicians so they can progress ideas to clinical trials to improve treatments and outcomes for so many.

Ride as many laps as possible within 3 hours with a sprint challenge the final hour. Book your place now for the ultimate team challenge or support ANZUP by donating towards the important Below the Belt Research fund.

“As an elite athlete, I love cycling and enjoy seeing all the riders out at the event, some who have never ridden to others who ride all the time, all here for the same reasons – to raise awareness and funds for below the belt cancers.”

KAARLE MCCULLOCH PEDALTHON AMBASSADOR AND COMMONWEALTH GAMES GOLD MEDALIST

We can defeat below the belt cancers with your support! www.belowthebelt.org.au

#BTBPedal18 #SYDPedal18 #5YEARS A LITTLE BELOW THE BELT 45

Melbourne Pedalthon

The Below the Belt Pedalthon launches in Melbourne The inaugural Melbourne Pedalthon was held on Sunday 18 March at Sandown Racecourse. The day was a huge success with more than 30 teams pumping out 2,120 laps (or 6,572 km) and pushing the fundraising total to more than $80,000!

They say Melbourne has four seasons in one day and it was certainly true as the Pedalthon unfolded at 7.00am. Riders were battered by wind, rain and the odd clap of thunder before the moody grey sky cleared to cloudless blue as the youngest riders took to the track for the first ever family challenge. The weather gods allowed just enough time for the families to enjoy a few laps and nine of the best to line up for the intense two-lap sprint challenge before the dark clouds and gusting winds returned forcing the awards presentation into the garages.

Despite the unbelievable conditions, almost all the riders pedalled for the full three hours, showing their dedication and tenacity in defeating below the belt cancers. The spirit of the day was summed up by race director Kent Williams who said the riders are so connected to the cause “they will just keep going whatever the weather”.

Thank you to every rider and volunteer who joined us out at Sandown Racecourse. Our thanks also go to the Melbourne Racing Club Foundation for their generous support and giving ANZUP the opportunity to take the Pedalthon to

46 A LITTLE BELOW THE BELT

Victoria and to Platinum sponsor Bristol-Myers Squibb and Silver sponsor Lendlease.

ANZUP is also very grateful to Melbourne Ambassador Jonathan Cantwell, for his energy, passion and support for the cause.

And finally, we were delighted to see so many ANZUP members, their patients and families, getting behind the Pedalthon by signing up teams, making donations, promoting the event and pulling on the Lycra themselves.

A special thanks to Dr David Pook and Associate Professor Jeremy Shapiro for sowing the seeds to take the Pedalthon to Melbourne and to Associate Professor Andrew Weickhardt and Dr Ben Tran for sharing important updates about where the funds go. All four were in the saddle on the day, with Ben bringing along a rickshaw to increase his degree of cycling difficulty. Our CAP Chair Belinda Jago also played a massive role helping with the event set up and signing up four ‘Bec’s Troops’ teams of family and friends – with ‘The MAMs’ raising more than $6,000!

We are delighted that over $80,000 was raised from the Melbourne Pedalthon. Every cent we raise through the Below the Belt Pedalthon events and our supporters’ kind donations goes directly towards clinical trial research via the Below the Belt Research Fund.

Melbourne Pedalthon

4

30+

SEASONS

6,572

TEAMS

KMS CYCLED

2,120 LAPS

$80K RAISED

Who was there?

Allegis Group Avee and the Crew Bec’s Troops Bec’s Troops Bros Ben Roberts BMS B – team #possible BMS Bristol – Myers Squibb Cycling Crew Does Sandown

Eastern Vets Family Williams FKCC GenesisCare Victoria Healthscope IPSEN Jamie Kearsley John Blyth Kev’s Crew

Luke Farrugia Mikaela’s Gals Monash Health Moore Bens MSD My Wheels are Toulouse Nikki Millivojevic Rickshaw Rally Roderick Insurance CAP All Stars

Ross Schoffel SLAM TDC Victoria Team Fordy Team Higgins The MAMs Zeps

A LITTLE BELOW THE BELT 47

Melbourne Pedalthon

Jonathan Cantwell Pedalthon Ambassador

“I’m extremely proud and honoured to be the ambassador for the Below the Belt Pedalthon. With over 100 riders all tackling the brutal wind and rain it was amazing to see everyone stick together and get through as a united team... Congrats again to everyone who participated and let’s make next year even bigger.” Jonathan Cantwell Jonathan Cantwell is a highly successful Australian professional road bicycle racer, father of two and CEO of custom bike manufacturer, Swift Carbon Australia. He has also been touched by cancer.

Between 2008 and 2011 Jonathan competed professionally with the Jittery Joe’s and Fly V Australia teams, before joining Team Saxo Bank for the 2012 season. He made his Grand Tour début at the 2012 Tour de France, where he took his first top 10 placing on stage 4, finishing sixth. Jonathan is now the CEO of Swift Carbon Australia in St Kilda Melbourne. Swift Carbon Australia is born out of a genuine love and passion for cycling.

In April 2016 something didn’t feel quite right so Jonathan went to his local GP for a check-up. The GP thought he had developed a cyst from bike riding, however after 20 years of riding Jonathan knew that this was something different so requested an ultrasound.

The ultrasound confirmed Jonathan’s suspicion and after seeing a medical oncologist, he was told he had testicular cancer and it should be operated on immediately.

Jonathan went from being a superstar athlete to fighting for his life.

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Following surgery, his medical oncologist advised Jonathan the tumour was 4.5cm and if he had left it another 6-9 months he may not have been so lucky. Jonathan then visited the ‘chemo room’ at the Alfred Hospital for treatment.

Twelve months on, Jonathan has ‘beaten cancer’, with clear results.

“From an awareness point of view, please make sure you go to the doctors even if you think it’s the smallest of issues. Mine saved my life.”

Jonathan is delighted to be the Melbourne Pedalthon ambassador, as the cause and the event are close to his heart.

‘It’s just awesome to be part of the Pedalthon, with these amazing people riding at Sandown to defeat below the belt cancers.’

Jonathan is committed to raising awareness of these cancers, especially testicular cancer, as it affects the younger generation.

He encourages the community to support the vital clinical trial research ANZUP undertakes to improve outcomes for below the belt – testicular, prostate, bladder and kidney – cancers.

“You should be open to the idea of clinical trials, for your own health, which can potentially beat the cancer.”

Melbourne Pedalthon

THERESE BARWICK AND IAN DAVIS

TOP FUNDRAISING TEAM, THE MAM’S WITH IAN DAVIS

Fundraising heroes

Top fundraisers

Congratulations to Therese Barwick our 2018 Melbourne Pedalthon fundraising champion raising an incredible $2,990.00!

Individuals

Teams

1. Therese Barwick

1. The MAM’s

2. Andrew Weickhardt

2. GenesisCare Victoria

3. Avee Waislitz

3. Eastern Vets

Therese was also team captain of the MAM’s who were the highest fundraising team raising $6,270 - well done to the Therese, Christine, Kristina, Helen and Debra!

Champions of the track Congratulations to 2018 Below the Belt Champions (Open Race), Bristol - Myers Squibb who completed 130 laps in 3 hours!

The 2018 Below the Belt Champions (Family Challenge) award went to Team Higgins. Congratulations Simon, Lisa, Jessica, James and Sophie!

Congratulations to the other winners of the day Individual Best Dressed: Edmond Kwan

Most Number of Laps (Age Group / Individual):

Best Named Team: My Wheels are Toulouse

Under 30: Vaughan Geddes - 31 laps 30-40:

Matthew Lynch - 35 laps

Fastest Lap - Male: Christopher Carter - 4:20

40-50:

Ewin Williams - 35 laps

Fastest Lap - Female: Bridget Lester - 4:37

50-60:

Ian Smith - 33 laps

Over 60:

David McCormack - 32 laps

Most Number of Laps (Open Race / Individual): Ewin Williams - 35 laps

Most Number of Laps (Family / Individual): Jessica Higgins

Sprint Challenge (Fastest 2 Laps / Individual): Christopher Carter: 9:51 Highest Fundraiser (Team): The MAM’s - $6,270 Highest Fundraiser (Individual): Therese Barwick - $2,990 Most Number of Laps (Family / Team): Team Higgins Most Number of Laps (Open Race / Team): Bristol - Myers Squibb - 130 Laps A LITTLE BELOW THE BELT 49

Melbourne Pedalthon

Event Partner The inaugural Melbourne Pedalthon was made possible by the support from its event partner, the Melbourne Racing Club (MRC) Foundation. Their generosity and support with providing the venue, logistical support, catering and beverages, has given ANZUP the opportunity to launch the Pedalthon to the Victorian community.

‘We are delighted to support ANZUP in launching the inaugural Below the Belt Pedalthon in Melbourne.’ Mrs Patricia Faulkner, AO, MRC Foundation Chair THE MRC Foundation has been established to enable the Melbourne Racing Club to centralise its charitable and community support, focussing on: • C haritable Support – leveraging the club’s assets to partner with charities and not for profit organisations; • S ocial Impact – developing partnerships with charitable and community organisations to address broad social issues that exist in our industries and; • L ocal Community – provide support to local organisations surrounding their racecourses and 13 Pegasus Leisure Group venues.

“The Melbourne Racing Club saw this as an opportunity to return the great support our local communities have given the club since it was established in Melbourne over 130 years ago. In establishing the MRC Foundation the club hopes to fulfil its mission of becoming a community leader in sporting, leisure and other related activities,” Mr Josh Blanksby, Melbourne Racing Club CEO. Through the partnership, the MRC Foundation invited their staff and members to participate in the Pedalthon, which included Christopher Carter and his team ‘My Wheels are Toulouse’, who took the winners title in the fastest laps category.

“I just wanted to offer a very quick but massive thank you for putting on such an incredible day. Yes sure, Melbourne was in all its glory today...but other than that it was a truly great event filled with lots of wonderful people and what I found most, an overall sense of happiness and warmth.

I just wanted to offer some gratitude to all the team who don’t get acknowledged or at times noticed much (a sign of a good event) unless needed.

Hoping you are all ecstatic and enjoying a brew or two with much back slapping and that the withdrawals that will hit tomorrow aren’t too hard.

Anywhoo... back to celebrating. It’s a wonderful event, and cause, and I hope to be part of it in some way again next year”.

Very very kindly, Luke Farrugia (MRC Member) The MRC Foundation’s mission is aligned with ANZUP, engaging the Victorian community and therefore creating opportunities to make a difference to those living with these below the belt cancers as well as the next generation.

ANZUP looks forward to working on the second Melbourne Pedalthon in 2019 and partnering with the MRC Foundation to deliver another well attended and successful event. It will again be held at Sandown Racecourse on Sunday 17 March 2019.

LUKE FARRUGIA

50 A LITTLE BELOW THE BELT

Melbourne Pedalthon

Event sponsors Bristol-Myers Squibb and Lendlease

PLATINUM SPONSOR:

SILVER SPONSOR:

BMS TEAM

Thank you to our Platinum sponsor Bristol-Myers Squibb and Silver sponsor Lendlease for their generous support which has been instrumental to the inaugural Pedalthon.

SIMON HIGGINS

“Outside of the Pedalthon, Bristol-Myers Squibb (BMS) have the privilege of working alongside the dedicated ANZUP team who focus their research in genitourinary cancers.

BMS is actively supporting patients with genitourinary tumours through our wide clinical trial program and philanthropic activities.

We enjoyed a great and challenging day with three BMS teams competing in some pretty interesting weather conditions.

Days like these are a great reminder of why we do what we do, and the impact our collective actions can have on patients.

Congratulations to the ANZUP team for the first Melbourne event, with a dedicated focus created and vital funds raised to improve outcomes for patients.� Simon Higgins, Director of Access, Policy and Advocacy.

A LITTLE BELOW THE BELT 51

Melbourne Pedalthon

The Eastern Vets ride to defeat below the belt cancers

by Neil Cartledge

The members of the Eastern Vets team, along with two other teams from the Eastern Veterans Cycle Club situated in the eastern suburbs of Melbourne, signed up for the inaugural Below the Belt Pedalthon in Melbourne. The Eastern Vets team of four, comprising of Rob Lackey, Peter Mackie, David McCormack and Neil Cartledge, whose EASTERN VETS TEAM ages span from 30 – 70 (and included one member currently undergoing treatment for advanced prostate cancer!) all enjoyed themselves immensely, so much so they have all declared themselves starters in next year’s event!

The event was held at Sandown racecourse, and was an ideal venue for a team’s cycle race with long straights, several technical corners and a significant climb when repeated 20 or more times. The inclement weather added another dimension to the 3 hour challenge when variable strong cold winds and rain assaulted the many riders battling through the 3 hour event.

Towards the end, thunder and lightning sent a shudder down the wet spines of the participants. Not long after the end of the 3 hour event, the weather improved to the point that the wind dropped and the sun came out to warm the next participants in their 1 hour event.

Prior to the start, the Eastern Vets team had plans to ride together. When it transpired that it was an aggregate of laps for each team member it became a case of completing as many laps individually and our team fragmented with the stronger riders each pushing hard to complete around 95km in the 3 hours.

From the starters signal, the young guns immediately attacked the bunch and within a lap, riders were strung out around the circuit. Most of the Eastern Vets team where able to stay in the front pack drafting various members of the other teams in the head wind sections and moving up when wind assisted. Within an hour the elite lead bunch started to thin down to some 40 odd riders as the early over exuberance took its toll on many.

By half distance, many of the riders were pulling in for a coffee break or stopped taking ‘selfies’ at the scenic points on the circuit. The Eastern Vets team were riding strong if not a little wet and windswept.

It is at about this point in a ride like this it gets tough for all. The legs are fatigued and dehydration has occurred, even on such

52 A LITTLE BELOW THE BELT

a cold and wet day. Cramps can make pushing the pedals almost impossible and the resolve that drove you to enter in the first place starts to wane. Another hour or so still to go so it’s time to dig deep! Draft other wheels, minimise the slowing into the corners so you don’t have to push hard on the exit. Keep drinking, swallow an energy gel, chew a power bar and ease a little on the descents where possible but just keep going. If you stop for any reason, you are not accumulating any lap points!

As the final minutes ticked down, the laps accumulated and if you are lucky, you can find a little more in the reserve tank. Your watch tells you it’s almost over and you strive to get past the riders in front, even to find the strength to try a sprint to the line and get over your teammate as we did. The Eastern Vets team were not quite on the podium but look out next year!

The pre-race breakfast and the after race lunch were most appreciated. The facilities provided to all the teams including the many handouts and riding paraphernalia that can be used on other rides is fantastic. A great ride to be involved in, for a most deserving cause, that is finding new treatments and maybe even a cure for ‘Below the Belt Cancers’!

As cyclists, we have ridden in many organised rides, some for competition, some for fund raising and some just for the satisfaction of achieving a good outcome. The Below the Belt Pedalthon is up there as one of the best with an outcome of more than $80,000 raised. It is clear that a lot of thought, planning and organisation went into this event. Thanks must also go to the various business sponsors who made the event possible. When corporate Australia is prepared to get behind the fundraising, it enthuses people like us to also put in an effort.

We were delighted to raise over $3,500, putting us as the 3rd highest fundraiser. The vast majority of the funds raised by the Eastern Vets team came from the members of the club, their family and friends.

Above all, the welcome and support from the organisers was very much appreciated. ANZUP and the many people that helped make it a great day, we thank you for your time, effort and dedication to the health of others. We will see you next year!

Melbourne Pedalthon “So many folks are saying they are keen for next year – especially those who bought bikes just for the day. We will be there – and all proudly flying the “official” prostate committee flag that was unveiled today. Eloise is super excited to talk about the event at school tomorrow and says she wants to sleep in her ANZUP cap and shirt! She probably will now she has grabbed an iPad, typed in “ANZUP” and found the Twitter feed with a photo of us in it. She is stoked that she is on the “news”, so we will go with that…”

Scott Williams

A LITTLE BELOW THE BELT 53

Melbourne Pedalthon

“I would like to thank and congratulate ANZUP on a very professionally run event. Our team, Eastern Vets, really enjoyed ourselves and look forward to next year. There was a total 8 or 9 riders from the Eastern Veterans Cycle Club across 3 teams on the day.�

Neil Cartledge

54 A LITTLE BELOW THE BELT

Melbourne Pedalthon

“My many thanks to all those at ANZUP involved in yesterday’s inaugural and successful Pedalthon. The organisation and location have a strong foundation for expansion of the event and held for the first time I believe word will spread very quickly for next year’s event.

Yes, the weather was about as challenging as you could ever expect although the rain, hail, thunder and lightning were fortunately quite brief. The wind and sheering turns into the “breeze” was challenging and makes for a weary body today...but, that is one of the reasons why my fellow team members enjoy it. Our average age was around 58 and we all agreed that finishing just 6 minutes shy of the most laps we had done very well.

Again, my thanks to you and all the supporting team at ANZUP”.

Colin O’Brien

A LITTLE BELOW THE BELT 55

Melbourne Pedalthon

“I love working in health care, I love spending time with my family and I love riding my bike. Today I got to do all three.”

Simon Higgins

56 A LITTLE BELOW THE BELT

Fundraising champions Sam Langford and THE ICONIC brave shave The staff at THE ICONIC banded together in support of their colleague Sam, who was undergoing treatment for testicular cancer.

The aim of the game was to gather volunteers to shave their heads or dye their hair or wax their body in support of ANZUP and Sam’s journey.

Sam, with the incredible support of his doctor (an ANZUP member), decided he wanted to raise money to support cancer research and help improve treatments and outcomes.

What started with a $2,000 fundraising goal was surpassed by an incredible $6,949. Congratulations to Sam and THE ICONIC team.

Stephanie Cairo-Velasquez, morning tea fundraiser for prostate cancer research For her year 10 school project, Stephanie decided to organise a morning tea fundraiser with her family, friends and school community raising awareness and funds for prostate cancer in memory of her late father.

Thank you to ANZUP member and medical oncologist, Dr Liz Hovey for her fantastic speech, talking about her patient (Stephanie’s father) his cancer journey and how clinical trial research gave him a further 10 years to enjoy travel, milestones and adventures with his family.

The morning tea fundraiser raised $1,240, for ANZUP! Amazing achievement Stephanie!

A LITTLE BELOW THE BELT 57

What does a donation look like?

We are so grateful to those who have already put their hands up for ANZUP. We would also like to thank the many people who have made personal donations directly to ANZUP. Your contributions are making a difference.

One hundred per cent of a donation goes directly towards clinical trials research for us to achieve our mission: to improve treatment for those affected by testicular, kidney, bladder and prostate cancers.

$50k - $250k

$10k - $500k

$1m - $5m

In-Kind Support

Kick off a pilot study

Give a grant or fund a scholarship

Support a clinical trial

Why in-kind makes a difference?

Invest in a pilot study to test the feasibility of promising drug therapies, surgical methods, postoperative care and palliative care options.

Inspire our culture of research by providing a grant or scholarship to clinicians involved in the care of patients with urogenital and prostate cancer.

Invest in a clinical trial to test the effectiveness, side effects and best dose of potential treatments for urogenital cancers.

Investment and support can come in all shapes and sizes.

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

How you can help 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 or by calling ANZUP on +61 2 9562 5042. https://www.anzup.org.au/donate/donateStep1Details.aspx

If you are interested in holding an event to support ANZUP or are considering joining an event such as the City 2 Surf, City 2 Sea, Sydney Marathon, Walk to Work Day or any other community event, please let us know and we will help you set up the fundraising pages.

100% of every donation made to ANZUP goes towards producing a clinical trial to improve the treatment of bladder, kidney, testicular 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.

58 A LITTLE BELOW THE BELT

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 2018 corporate supporters include:

We acknowledge and thank the following organisations for the generosity they have shown by providing their services pro-bono.

Astellas, AstraZeneca, Ipsen, Janssen, MSD and Novartis.

Active Display Group, AFI Branding and The Saturday Paper.

A LITTLE BELOW THE BELT 59

Like cycling? Don’t like cancer?

Join us in the race to defeat prostate, testicular, kidney and bladder cancers.

Since 2014, the Below the Belt Pedalthon has welcomed over 1,200 people, riding to raise awareness and funds for ANZUP, below the belt cancers and clinical trial research.

“The wonderful thing about this fundraising initiative is that all the funds we generate go back to support research. We are trying to support the projects that are going to led to future ANZUP trials and these will help generate the evidence we need to care for our patients better with these disease.’

Professor Ian Davis, ANZUP Chair

Every cent we raise through the Below the Belt Pedalthon and our supporters’ kind donations goes directly towards clinical trial research via the Below the Belt Research Fund. In 2017, it provided much needed seed funding to support seven ANZUP members to progress new trial ideas to the point of becoming full scale studies.

Together we can defeat below the belt cancers.

S Pe ydne da lth y on

Ride with us in Sydney Tuesday 18 September 2018 Sydney Motor Sport Park, Eastern Creek www.belowthebelt.org.au #BTBPedal18 #SYDPedal18 #5YEARS

ne ur n o lb ho Me dalt Pe

Join us in Melbourne Sunday 17 March 2019 Sandown Racecourse, Springvale SAVE THE DATE! #BTBPedal19 #MELBPedal19