ANZUP's 'A little below the belt' consumer magazine - December 2017

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

2017 Below the Belt Pedalthon Riding to defeat urogenital cancers AN ANZUP CANCER TRIALS GROUP PUBLICATION

ISSUE 8, DECEMBER 2017

THE GLOVES ARE OFF

YOU VS.

CANCER DISCOVER THE LATEST IN CUTTING EDGE CLINICAL TRIALS LIVE COMMENTARY BY WORLD-RENOWNED UROGENITAL & PROSTATE CANCER EXPERTS

THE COMMUNITY

ENGAGEMENT FORUM DIRECT FROM SYDNEY AT THE HYATT REGENCY

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SUNDAY 8 JULY 2018 BOOK YOUR FREE PLACE

A N Z U P. O R G . A U

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 Astellas and 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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Below the Belt Pedalthon Sydney More information on page 45

What’s inside 03 What is ANZUP? 05 Message from the Chair, Professor Ian Davis 09 Consumer Advisory Panel update 10 Community Engagement Forum update 12 CEO update, Margaret McJannett 15 The journey – Kevin’s proactive approach to prostate cancer 18 Australia prostate cancer trial aims to make global contribution 19 Spotlight on prostate cancer

ANZUP Cancer Trials Group Level 6, Lifehouse Building 119-143 Missenden Road CAMPERDOWN NSW 2050 Phone +61 2 9562 5042

20 The journey - Online support for testicular cancer survivors - free from stigma, widely accessible and convenient to use 22 Spotlight on testicular cancer 24 New innovative projects for bladder cancer 25 Spotlight on bladder cancer

Email anzup@anzup.org.au

26 New kidney cancer trials 28 Spotlight on kidney cancer

Twitter @ANZUPtrials

29 Current ANZUP trials 41 Where to find your reliable health information online

Facebook ANZUP

43 2017 fundraising champions 44 What does a donation look like?

Published by ANZUP Cancer Trials Group Ltd. Copyright. Editors Lucy Byers and Steve Gibbons Contributing editors Gillian Bailey and Michelle Bowers Graphic design by Designcycle 4 A LITTLE BELOW THE BELT

45 2017 Below the Belt Pedalthon 58 Corporate Supporters and In-Kind Supporters

Message from the Chair, Professor Ian Davis

Welcome to this edition of ‘A little below the belt’, produced by ANZUP to promote awareness of the ‘below the belt’ cancers and the importance of clinical trial research.

You might have seen a story this morning on the news, or in the paper, or your social media feed, or overheard in conversation: there’s been a cancer breakthrough and it’s the cancer that has affected you or someone you love! The story had some cool animations, and some very important people looking uncomfortable in lab coats as they stand around looking at tubes, or scans, or engaged in intense conversation, or walking purposefully along a corridor. Almost certainly the story opened with a heartrending story about someone affected by this disease, walking wistfully with their partner or their dog. Strangely, the story finished without giving any clear indication of when those affected by cancer might actually be able to benefit from this wonderful achievement.

Well, part of it is true. Many people are working very hard and have made progress in understanding or treating the disease better. Most of the time they have tried to be careful not to overstate what has happened, but the media covering the story know this won’t sell so they’ve added “breakthrough” or “ground-breaking” or whatever today’s phrase is, and viewers are hooked. But so far it’s all in the lab: no-one affected by the disease today can benefit from it.

That’s where ANZUP comes in. ANZUP exists to improve outcomes for people affected by urogenital cancers (cancers of the prostate, kidney, bladder or testis). We do this by performing clinical trials to generate the evidence which turns this information into something meaningful, that is, improved treatments and outcomes for people affected by these diseases.

The trials we do are the trials that cannot or will not be done by others, such as the pharmaceutical industry, for a range of reasons, but we see the need for them based on what we see happening every day for our patients. This is difficult, timeconsuming and expensive work, but it needs to be done.

Our scientific direction is driven by a multidisciplinary Scientific Advisory Committee that encompasses various subcommittees directly overseeing trials activity and development in these diseases, together with committees for Translational Research and Quality of Life

Many people are working very hard and have made progress in understanding or treating the disease better

And then viewers realise they saw exactly the same story yesterday. It was a different disease / animation / scan / corridor / dog, but otherwise it was exactly the same as today’s story, and the one from last week, and the week before that. And nothing ever seems to come of it. What is going on?

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& Supportive Care. We now have almost 1300 members over all disciplines involved in urogenital cancer care and research, including a vibrant Consumer Advisory Panel that has input at all levels of our organisation.

ANZUP’s clinical trial program spans the spectrum of the urogenital cancer types, as well as addressing many of the key issues that arise at different points during someone’s experience with cancer. Some of these trials involve the sorts of novel medical or other interventions many people might think about when they think of clinical trials. Others involve new or better ways of using established treatments, or ways of supporting people through treatment more effectively, including both physical and psychological support. They often involve many medical disciplines working together. We have trials run by surgeons, radiation oncologists, medical oncologists, and psychologists. We are planning studies in nuclear medicine, exercise, information provision, and decision making. We work across Australia and New Zealand as our name suggests, and some of the trials we lead involve many countries and regions around the world. We also participate in international trials run by similar groups overseas. Our clinical trials program has included over 2000 patients to date, and at the time of writing we are involved in nine active clinical trials with others at various stages of development.

ANZUP also recognises we must lay the foundations today for the work of tomorrow. We are continually scanning the horizon to identify critical areas of clinical need, as well as new opportunities for improving outcomes. We take very seriously our responsibility to grow and foster the clinician-scientists of tomorrow. They will take our work far beyond what we can imagine, and incidentally they will probably be looking after us at that time as well. Sadly, these cancers are still far too pervasive

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ANZUP exists to improve outcomes for people affected by urogenital cancers (cancers of the prostate, kidney, bladder or testis). We do this by performing clinical trials to generate the evidence which turns this information into something meaningful, that is, improved treatments and outcomes for people affected by these diseases.

Our clinical trials program has included over 2000 patients to date, and at the time of writing we are involved in nine active clinical trials with others at various stages of development.

in our world. ANZUP, with the help of its sponsors and corporate supporters, provides travel grants, scholarships and fellowships that enable people to attend our annual scientific meeting, or undertake research projects that will lead to the next generation of trials, or to provide more substantial support for critical periods of time during their career development.

Clinical trials are expensive, difficult, and time-consuming.

ANZUP must identify the resources required to perform all of its clinical research. These come from competitive grants, and sometimes through support provided by industry although in those cases the trial is still run and controlled entirely by ANZUP. Fundraising unfortunately will always be a major part of our activity. One of our most important fundraising events is the Below the Belt Pedalthon, now in its fourth year. This event was held at Eastern Creek in Sydney on 19 September and is a day where people literally show the strength of their commitment to the ANZUP cause, through participation in the cycling event as well as fundraising. The Pedalthon raised over $250,000 and 100% of these funds will be allocated to ANZUP members to help them in research projects that are planned to lead to future ANZUP trials. You can read more on page 50 about the research projects that ANZUP members are working on because of the funds raised from the Pedalthon.

We are pleased to announce that the Below the Belt Pedalthon will be held in Melbourne for the first time, in association with the MRC Foundation, on 18 March 2018 at Sandown Racecourse.

Information can be found at www.pedalthon.org.au.

in the field for the last 12 months. We run a preceptorship program in prostate cancer, which is an intense 1.5 day program aimed specifically at trainees. We have plans to extend the preceptorship program into other urogenital cancers.

And have I mentioned that we have only just turned nine years old? 2018 will be our tenth anniversary year and we have some special plans to appropriately mark this occasion.

I am enormously grateful to the ANZUP Board, the ANZUP staff (Anne, Christine, Gillian, Lucy and Michelle), our fellows, our tireless CEO Marg McJannett, all who contribute to the SAC, the subcommittees and the Consumer Advisory Panel, our volunteers Lesley and Jo, our colleagues and collaborators at NHMRC Clinical Trials Centre and at the Centre for Biostatistics and Clinical Trials, our corporate supporters, sponsors and donors, and all of you.

Thank you for your interest in ANZUP. Whether you have just joined us or you have long been a direct participant in our activities: you make it all possible. We cannot do what we do without you.

I’m tired of those stories that build our hopes but never go anywhere. I live for the day when they’re no longer newsworthy, but the true nature of progress in medicine is rarely that exciting and is hardly ever a “breakthrough”. The real work is the hard slog. That’s what we do. Thank you for your support.

I hope you enjoy this edition of ‘A little below the belt’.

Space here does not permit a full description of ANZUP’s other activities. Our committees are highly active and productive. We host face to face concept development workshops. There is a “best of” meeting held annually to review the major advances

IAN DAVIS Chair

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Like cycling?

Don’t like cancer?

RIDE WITH US IN MELBOURNE

SANDOWN RACECOURSE SUNDAY 18 MARCH 2018

Join us in the ride to defeat testicular, prostate, bladder and kidney cancers!

Following on from the success of Sydney’s Below the Belt Pedalthon, ANZUP Cancer Trials Group is delighted to launch the Below the Belt Pedalthon in Melbourne on Sunday 18 March at Sandown Racecourse.

Whether you are an avid cyclist, new to the sport or just looking for a challenge, we invite you to ride to help those living with urogenital cancers and to improve outcomes for the next generation.

Ride as many laps as you can in 3 hours (open race) or 1 hour (family challenge) on Melbourne’s iconic Sandown Racecourse. The day also includes the short course competition, best dressed, post ride lunch, awards presentation and great entertainment.

A fun day out for all!

Every cent raised by the Pedalthon goes directly towards clinical trials research, which means straight into the hands of experts committed to treating testicular, kidney, bladder and prostate cancer better.

Help us improve the treatment and outcomes of those affected by the below the belt cancers. We can defeat these cancers with your support!

Event details Sunday 18 March 2018 7.00am - 7.45am Registration and breakfast 7.45am - 8.00am Safety and event briefing 8.00am - 11.00am Open race (most laps in 3 hours) 11.05am – 12.05pm Family challenge (most laps in 1 hour) 12.15pm – 12.45pm Sprint challenge 12.45pm BBQ Lunch and awards presentation

To join us, register and ride go to: www.pedalthon.org.au With thanks to our event partner MRC Foundation

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Consumer Advisory Panel update

By Belinda Jago, CAP Chair

It’s hard to believe we are so close to Christmas.

Another extremely busy year has now flown by with a lot of opportunities progressed. Time becomes the challenge but on reflection, the Consumer Advisory Panel (CAP) has worked successfully as a collaborative team, supporting ANZUP’s research portfolio and other activities in a very positive way.

A couple of our CAP members have participated in clinical trials as part of their own cancer experience and this is often a motivating factor to become involved with ANZUP. We are able to reflect on our own experiences when we are considering new ideas put forward by ANZUP members to potentially become a new clinical trial.

CAP members participate in the disease subcommittee meetings along with various Trial Management Committees (TMC’s) and with the three new trials opening by the end of 2017, there will be further opportunities for us to be involved.

The CAP is also working on a project to further promote and educate the community about the benefits of participating in a clinical trial. It is important for trials to be considered as part of an

THE CAP

initial diagnosis and treatment discussion and not as a last resort. The ANZUP membership, including the CAP, is well versed in the benefits of clinical trial research but many patients who are treated for their cancer outside of the larger hospitals, regional and rural areas may not have had much opportunity to consider the possibility of participating in a clinical trial. We hope that by developing online videos this will help to better inform the community and patients about the importance of clinical trials and empower them to ask their treating team about all options available. This will help to ensure a well informed decision can be made about the best treatment plan moving forward. We are currently looking for funding opportunities to support this project. We will keep you posted on our progress in ANZUP’s next consumer magazine.

I would particularly like to thank the CAP for stepping up and offering very helpful feedback to the ANZUP membership from a consumer perspective and we look forward to supporting ANZUP’s many activities again during 2018.

So until then we wish you all a happy and healthy festive season with your family and friends.

THE CAP WORK ON PATIENT INFORMATION VIDEOS

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Community Engagement Forum update

Every year the ANZUP Community Engagement Forum offers a unique opportunity for the general public to hear from a diverse panel of urogenital cancer experts who share their knowledge and answer questions. It’s a chance to discuss the importance of clinical trials and how they improve treatments and outcomes for people diagnosed with prostate, testicular, bladder and kidney cancers.

This year the annual Community Engagement Forum, ‘A little below the belt’, brought together more than 80 patients, their families and clinical experts in an open and relaxed setting, at the Pullman Albert Park, Melbourne on 16 July 2017.

ANZUP Chair Professor Ian Davis said, ‘’the free community forum provides information and the opportunity to discuss the importance of clinical trials and the impact that a diagnosis of ‘below the belt’ cancers can have on a person and their family’’.

Professor Ian Davis opened the forum with a brief overview of ANZUP and an explanation of how ideas become clinical trials.

Professor Suzanne Chambers, a health psychologist who has worked as a practitioner researcher in psychological support for people with cancer for over twenty years spoke about the importance of quality of life.

ANZUP Chair Professor Ian Davis said, ‘’the free community forum provides information and the opportunity to discuss the importance of clinical trials and the impact that a diagnosis of ‘below the belt’ cancers can have on a person and their family.”

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PROFESSOR KEVIN STEIN

PROFESSOR KEVIN STEIN

ANZUP CHAIR PROFESSOR IAN DAVIS

International speaker Dr Kevin Stein, delivered a thought provoking session on cancer survivorship, based on his research to gain a better understanding of factors related to the physical and psychosocial functioning of persons affected by cancer and develop, test, and disseminate evidence-based interventions to address these issues.

Nurse practitioner and sexual health consultant, Kath Schubach tackled the impact of cancer on sexuality and intimacy while Dr Haryana Dhillon provided a guide to finding reliable information online.

The Forum concluded with an engaging panel discussion led by David Pook and an ENZAMET trial patient Donald Lorimer. Treatment choices and decision making were discussed before Leonie Young opened questions from the floor.

One delegate noted in the ASM feedback survey that the session offered “fantastic information and interaction with consumers�.

Those who attended the Forum commented they were impressed by the event and found the speakers to be informative and well prepared. Others said they were able to take home new information relevant to their particular situation.

DR DAVID POOK AND PATIENT DONALD LORIMER DISCUSSING THE ENZAMET TRIAL

Overall the day provided a great opportunity for members of the public to engage with an experienced team of presenters to learn about ANZUP and its research as a cooperative clinical trials group, supportive care issues and personal experiences about what it is like to participate in a clinical trial.

Thanks to our Victorian ANZUP members and our colleagues and friends at Cancer Council Victoria and PCFA who promoted the forum throughout their networks and assisted with a full house event.

The 2018 Community Engagement Forum will be held on Sunday 8 July at the Hyatt Regency in Sydney. To find out more or to reserve your space visit www.anzup.org.au

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CEO update By the CEO of ANZUP, Margaret McJannett

ANZUP’s mission is to conduct clinical trial research to improve treatments and outcomes of bladder, kidney, testicular and prostate cancer. Clinical trials are the only way to ensure a new treatment or approach to cancer management is safe, effective and, potentially, life changing. Our clinical research aims to identify EMERGING drug interventions, INNOVATIVE surgical procedures, and ENHANCED APPROACHES to the management of urogenital and prostate cancers.

We continue to power ahead with active trials across all cancer types. These trials collectively involve thousands of patients, and many hours of work and commitment provided by our members and their clinical and research teams.

• T he UNISoN trial 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.

• T he KEYPAD trial will test if a drug currently 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.

• F inally, the TheraP trial will compare lutetium with cabazitaxel (Lu-PSMA) for men with prostate cancer that has spread to other parts of the body and has continued to grow despite standard treatment, including hormonal Earlier this year ANZUP held face-to-face concept development treatment and previous docetaxel chemotherapy. We want workshops (CDW) across the four disease-specific cancers to know how Lu-PSMA compares against cabazitaxel in we focus on along with a Quality of Life and Supportive Care terms of shrinking the cancer, improving pain, delaying intensive full day workshop. These workshops facilitate our the time until the cancer grows again, effects on quality of multidisciplinary membership coming together to review life, safety, and how long men survive after the treatment. and refine ideas and concepts, brainstorm new ideas, review TheraP brings together several groups, that without ANZUP, the current trial and treatment landscape, as well as discuss probably would not have been able to work together. how the field might develop over the next few years. As a It also represents the first consequence we have new ideas project supported through the being developed through a agreement between ANZUP and number of working groups so we the Prostate Cancer Foundation can continue the pipeline of new Our clinical research aims of Australia. Other support for concepts coming through our the trial is provided by Endocyte Scientific Advisory Committee to identify EMERGING drug and the Australian Nuclear (SAC) and the subcommittees. interventions, INNOVATIVE Science Technology Organisation We were delighted to announce surgical procedures, and (ANSTO). One of ANZUP’s that our ENZAMET study ENHANCED APPROACHES to strategic goals is to be able to reached its recruitment target undertake trials without the limits the management of urogenital of 1100 patients earlier this year. of competitive grant funding and and prostate cancers.

This was the first study of this TheraP is a great example of how size that ANZUP has led globally this might work in the future. with patients being recruited You can read more about our trials from 83 participating sites across throughout the magazine or via the ANZUP website Australia, New Zealand, USA, Canada, Ireland and the UK. www.anzup.org.au Whatever the outcome of this trial, in the future men with metastatic prostate cancer will benefit from the evidence we ANZUP’s multidisciplinary membership (1300) includes medical, generate from this trial. We anticipate ENZARAD will reach its radiation and surgical oncologists, nurses, psychologists, recruitment target by mid-2018. researchers, trial coordinators and allied health professionals.

ANZUP is also very fortunate to have an active and engaged We have just launched the UNISoN and KEYPAD trials and are Consumer Advisory Panel (CAP). The CAP provides invaluable very excited to be launching a further new trial before the end advice on specific studies, general research directions, and of the year – a true testament of ANZUP’s membership and the priorities from a consumer perspective. The CAP also provides a concept development process. channel for communication from ANZUP back to the community.

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We hosted our annual free Community Engagement Forum in July. It was enthusiastically supported by a large number of patients, survivors, family, friends and general members of the community. This forum is an important way for us to provide information to the public regarding ANZUP and ANZUP-led trials, why clinical trials are important and how we as medical, nursing and allied health professionals are trying to improve outcomes for our patients. ANZUP will convene our next Forum at the Hyatt Regency on Sunday July 8, 2018. Further information will be available on the ANZUP website or you can join the Friends of ANZUP to receive updates.

the peak multidisciplinary meeting for genitourinary cancers in this part of the world. This year’s theme ‘The Art & Science of Best Practice’ provided a platform to discuss innovations in research and practice that have facilitated the delivery of top-quality care for people with prostate, kidney, bladder, penile and testicular cancer. We welcomed over 350 delegates from all over Australia, New Zealand and internationally who were treated to another highly successful meeting including our inaugural Translational Research Symposium. We are extremely grateful to the efforts of our convening committee led

by Dr Carmel Pezaro. We are also grateful to our numerous sponsors for their ongoing support to ensure another high quality program.

In September we held our fourth Below the Belt Pedalthon.

With perfect spring weather we welcomed nearly 300 riders and 48 teams out at Eastern Creek Raceway to ride 4 hours to defeat 4 In association with the Monash PROFESSOR IAN DAVIS, MARGARET MCJANNETT, cancers. We are extremely grateful Institute for Health and PROFESSOR SILKE GILLESSEN to our founder Simon Clarke, his Clinical Education we hosted family, friends and their extensive another Preceptorship in networks, our donors, corporate supporters, our dedicated Prostate Cancer. The 1 ½ day workshop involved five senior team of volunteers and of course our wonderful ANZUP staff clinicians and 36 multidisciplinary trainees from Australia and who all worked tirelessly to ensure a very successful day. The New Zealand.

Pedalthon has provided an amazing platform both in terms Our final educational event for the year was the “Best of raising awareness of these below the belt cancers and the of GU Oncology Evening Symposium” in Sydney on importance of clinical trials but also much needed funds to 8 November. This is a collaboration between ANZUP and support our research. To date we have received over USANZ (Urological Society of Australia and New Zealand) and $250,000 with funds still coming in and we are thrilled to provides an in-depth review of the highlights in urogenital announce we have now reached the $1million raised in (GU) cancers for the past year. Presentations were given by 4 years. I would encourage you to view the Pedalthon video experts in their fields to over 60 delegates. We are grateful to at www.belowthebelt.org.au and see what an amazing day the support from our sponsors who made the event possible. we had!

We are very proud of this our 8th edition of our community As a consequence of the Pedalthon the ANZUP Board established magazine ‘A little below the belt.’ It is now distributed to our the Below the Belt Research Fund in 2015. Since that time 100% members, 500 cancer centres, Friends of ANZUP, stakeholders of the funds raised from the Pedalthon have been committed to and donors. Please let us know if you would seed-funding novel research. This year we supported 7 projects be interested in having additional copies in your offices and/or covering all four of the cancers we focus on and included waiting rooms. You can view the electronic copy on our website: patient support, exercise therapy, database development and http://anzup.org.au/content.aspx?page=newsletter translational research. This represents another key step towards Next year, ANZUP will be celebrating a key milestone, our achieving one of ANZUP’s aspirational goals: support for its own 10th anniversary. In that time we have seen significant growth trials. More information on this is available in this magazine and of our membership, from 130 to nearly 1300 members as well through the ANZUP web site www.anzup.org.au as thousands of patients both nationally and internationally Following on from the success of the Sydney Pedalthon participating on ANZUP trials. It serves as an important we have teamed up with the Melbourne Racing Club reminder of the ongoing commitment of our community, Foundation and will launch the Melbourne ride on Sunday our ANZUP members and their patients.

March 18, 2018 at Sandown. We invite you, your family and We hope you will help us continue to build on our research friends to join us to enjoy the day and help us continue to activities as we approach our 10th anniversary. raise awareness and funds for ANZUP and below the belt cancers. For more information on the Melbourne event visit Please enjoy this edition of ‘A little below the belt’ and best www.pedalthon.org.au wishes for the festive season.

Both education and mentoring continue to be an important MARGARET MCJANNETT focus for ANZUP. Our major annual educational event is the CEO, ANZUP Cancer Trials Group Annual Scientific Meeting (ASM) which is now recognised as

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FR

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to

Jo

in!

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 14 A LITTLE BELOW THE BELT

The journey

Kevin’s proactive approach to prostate cancer Nurse Practitioner: Kath Schubach | Prostate Cancer Patient: Kevin Michael

MAUREEN AND KEVIN MICHAEL

We speak with Urology Nurse Practitioner, Kath Schubach, and prostate cancer patient Kevin Michael about his experience on the ENZAMET trial.

Kevin Michael, 71, is an electrical power auditor, advocate for his workplace health awareness program, loving husband, father and grandfather. He is half way through the ENZAMET trial for prostate cancer.

Kevin stayed in great health over the years, but through his wife Maureen’s interest in genealogy found he had three uncles who died from prostate cancer, and a cousin who had his prostate removed following cancer detection. Armed with this information, Kevin took a proactive approach and, from the age of 40, had regular blood tests to check for any signs of the disease. Kevin was given a clean bill of health for nearly 30 years.

In July 2015, Kevin went to his GP to have a routine blood test and the results came back as abnormal. The GP examined Kevin’s prostate and discovered a lump.

Kevin was referred to a urologist who conducted tests, including a MRI, which highlighted a growth contained to the prostate. The urologist arranged for further tests including a biopsy. The results showed an aggressive prostate cancer with a Gleason score of 9. Further investigation was ordered to check whether the cancer had spread.

Thankfully, these tests came back clear and it was decided, after consultation with the urologist as well

as discussion with the nurse practitioner, and with Maureen, that Kevin would have his prostate removed by robotic surgery.

Kevin’s post-surgery recovery was good.

Three months on, a post-operative appointment with the urologist revealed a blood test PSA of 10. After four further weeks of monitoring, a new blood test returned a PSA of 21. Kevin was referred for a PET scan, and eight small spots in the abdomen showed up – not operable but treatable.

The urologist suggested a trial would be beneficial given the quite aggressive nature of the cancer. This would include chemotherapy for 18 weeks and hormone treatment for the rest of Kevin’s life.

Kevin went off to Box Hill Hospital to start the ENZAMET trial under the supervision of a medical oncologist and the help of a fantastic support team.

In Kevin’s own words, he felt the care was fantastic. He was given a printed calendar of appointment dates and treatment times, and who to see when. In other words, he didn’t have to think, just go. He was also given the direct telephone contact number of his clinical trial nurse coordinator so he could call at any time with any concerns.

The start was not smooth. Kevin experienced sleep disturbances, sensitive eyes, hair loss, tingling fingers and loss of finger nails, body shakes, weight gain and general weakness. As a consequence it was decided he should take some time off work to recuperate.

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The journey

How did you find out you had prostate cancer?

“Annual blood test with local GP. There was a change in my PSA level so I was referred to a urologist for further tests.”

What information did you look at when you were trying to decide what to do?

“Information pack from Peter McCallum Cancer Centre and additional information from the Cancer Australia website.”

How did you find it?

“Very enlightening. The information put me at ease knowing the best treatments were available.”

What were your first thoughts about going on a trial?

“I was excited with having the opportunity to potentially go on the trial, and hoped I would be accepted.”

What convinced you to go on to the trial?

“I didn’t need much convincing, due to reading daily newspapers with frequent articles relating to trials and how successful they are for most types of cancer.”

What has your experience of the trial been like?

“Exciting and (it) has provided me with peace of mind.”

What advice would you give other people in a similar situation?

“Reach out for any assistance available and, if possible, seek out if any trials are available.”

What was your experience with your doctor, nurses, trial liaison, like during the trial?

“I would have to say fantastic, as the experience took a lot of my anxiety away and helped my family members cope with my medical condition. I must mention that nurse practitioner Kath Schubach (my guardian angel) has provided total support throughout my journey with cancer. Anytime I had a question she had the answer, or knew where to source the information.

Most conversations ended with ‘You’ll be right mate.’”

Eighteen months on, Kevin is feeling pretty good. He is walking twice a day, playing nine holes of golf, and attending exercise physiology sessions. He is back at work three days a week, and ensures his quality of life is maintained by sharing many holidays with his wife, two daughters, a son-in-law and three grandchildren.

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Kevin has been proactive in many ways. He has enrolled in two other trials: for his daughter, the BRCA trial to investigate any links to breast cancer from prostate cancer, and the geriatric trial for over 70-year-olds on chemotherapy, which includes a rehab program to assess his general health, fitness and strength.

He is also part of the Prostmate program (a free program introduced for male employees over 45 to check their PSA via blood test on an annual basis). Identifiable irregularities are referred to an individual’s GP. Kevin had the opportunity, through the program in his workplace, to talk to other men about his experience with prostate cancer and to make sure men look after their health and get checked. Through this program more than 140 men have been tested for prostate cancer. Kevin is firm in saying men should be aware before, during, and after any diagnosis.

Through his diagnosis and treatment, Kath Schubach has been a great support to Kevin, giving him advice and guidance.

Kath is a qualified Genitourinary (GU) nurse practitioner with more than 20 years’ experience.

She has a Masters in Nursing and Post Graduate studies in urology, continence and oncology nursing.

Kath is currently working in KATH SCHUBACH private practice in metropolitan and rural areas with three urologists. The model of care is based on the collaboration of the urologist and nurse practitioner to achieve optimal outcomes for the patient.

Kath has an expertise in managing sexual dysfunction in oncology patients across both the public and private sectors, as well as patient care and support through clinical trials and research.

She is currently Vice President of the Australian & New Zealand Urology Nurses, a Board member of the Victorian Urological Nurses and is a SAC member of ANZUP.

The journey

What information do you look at when deciding what options to offer your patient?

If you are a patient from a regional or remote area, can you access the trial?

“When patients are given their initial diagnosis by the urologist they are then introduced to me. I assist with helping patients with an explanation of their diagnosis and also allow time for patients and their partners to ask questions. I let them know that a treatment decision does not need to be made today.

“The ENZAMET trial is now closed for recruitment, however ANZUP has other prostate cancer trials open.

I provide patients with the Prostate Cancer Foundation of Australia (PCFA) information and also provide Cancer Council contact numbers. We also supply them with a contact number if they have any questions whilst they are reading the information supplied.”

Your role as a nurse practitioner: explaining patients’ cancer, their options, what each treatment means for them, and what outcomes they will have?

“To make an informed decision I suggest they are aware of their treatment options and answer any questions they may have. It is also important that they speak to the relevant specialist For example, if they want radiotherapy they should book an appointment to see a radiation oncologist. They can also speak to patients in similar situations through the Cancer Council connect program at the Cancer Council in their state.”

Your explanation of clinical trials and how they can improve outcomes and treatment of patient’s cancer: “Having an understanding and knowledge of current clinical trials in GU is paramount to providing patients with the option of entering a clinical trial, if they fit the criteria.”

An overview of the support and care you receive when on a clinical trial. Including information provided to the patient: “When patients are identified as suitable for a clinical trial they will meet a clinical trials nurse. The clinical trial nurse becomes part of the multidisciplinary team caring for patients on clinical trials. They are the ‘go to’ people when patients are experiencing any issues whilst having their treatment.

They work very closely with the consultants to ensure patient’s symptoms are identified and treated promptly.”

Many cancer trial sites are open in regional areas. In consultation with your specialist, they will assist you with finding the best location for you, or if support is available to get you to the treating centre.”

What is the ENZAMET trial?

Enzalutamide is a new hormone treatment taken as tablets.

Previous trials have proven that enzalutamide improves survival and quality of life in men with prostate cancer that has stopped responding to standard hormone treatments and chemotherapy. This large, international randomised trial will determine if treatment with enzalutamide can improve survival, and quality of life, in men starting hormone treatment for newly diagnosed prostate cancer that has spread beyond the prostate. The trial is led from Australia by ANZUP in collaboration with the NHMRC Clinical Trials Centre. There are 1125 men from Australia, New Zealand, Canada, the US, Ireland, and the UK involved in this trial. The trial is now closed to recruitment and the men who participated are being followed up.

The prostate is a gland found only in men. It produces fluid that forms part of the semen expelled when a man ejaculates. The gland wraps around the urethra (the tube in the penis through which urine and semen pass) at the base of the bladder. In healthy men, the prostate is slightly larger than a walnut.

Cancer may develop within the cells of the prostate gland; this is termed ‘prostate cancer‘. *image from www.myvmc.com – My virtual medical centre

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

You can also contact ANZUP on 02 9562 5042 or refer to the website www.anzup.org.au and search for the trial information http://anzup.org.au/content. aspx?page=trials-prostate.

A LITTLE BELOW THE BELT 17

Australian prostate cancer trial aims to make global contribution Following months of research and a highly successful partnership with the Prostate Cancer Foundation of Australia (PCFA), ANZUP has opened an important study for the treatment of men with advanced prostate cancer.

Many prostate cancers, in particular those that have spread or become resistant to hormonal therapies, have a substance on their cell surface called prostate specific membrane antigen (PSMA). Lu-PSMA is a radioactive molecule that, after injection into the vein, 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 (most often bones or lymph nodes), while sparing most normal tissues.

Previous studies including a pilot at the Peter MacCallum Cancer Centre in Melbourne have shown promising activity of Lu-PSMA in patients with metastatic 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 be selected at random to receive Lu-PSMA and half will receive cabazitaxel.

“As a world first, multicentre randomised clinical trial, LuPSMA TheraP is expected to provide strong data,” says Nuclear Medicine Physician A/Prof Michael Hofman. “We hope it will mean Australian prostate cancer research can contribute significantly on a global scale.”

The study will recruit 200 eligible patients via 10 cancer centres in Australia over a two-year period.

Recruitment for this trial is opening soon. For further

information please refer to page 40 in this magazine or via link http://www.anzup.org.au/content. aspx?page=lutetiumprostatecancertrial.

The study is a partnership between ANZUP and the Prostate Cancer Foundation of Australia in collaboration with the NHMRC Clinical Trials Centre. It is supported by the Australian Nuclear Science and Technology Organisation (ANSTO) and ABX (Advanced Biochemical Compounds)/ Endocyte.

ANZUP Chair, Professor Ian Davis says the group was delighted to partner with PCFA to launch this significant study.

“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.”

Will this trial be suitable for anyone with prostate cancer?

No. This trial is aimed specifically at men with prostate cancer that has spread to other parts of the body and has continued to grow despite standard treatment (including hormonal treatment and previous docetaxel chemotherapy), and where you and your doctor have agreed that the next step is treatment with another chemotherapy drug called cabazitaxel.

For more information, including FAQs about the trial and an interview with A/Prof Michael Hofman and Prof Ian Davis, visit www.anzup.org.au. If you think you may be eligible for this trial please talk to your treating team.

“As a world first, multicentre randomised clinical trial, Lu-PSMA TheraP is expected to provide strong data,” says Nuclear Medicine Physician A/Prof Michael Hofman. “We hope it will mean Australian prostate cancer research can contribute significantly on a global scale.”

18 A LITTLE BELOW THE BELT

Spotlight on prostate cancer

What is prostate cancer?

Prostate cancer symptoms

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

The symptoms can include:

Prostate cancer is the most common cancer diagnosed in Australia and the third most common cause of cancer death. One in five men will be diagnosed with prostate cancer by the age of 85. It is more common in older men, with 63 per cent of cases diagnosed in those over 65 years of age.

• a weak urine stream.

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

Your risk of prostate cancer can be increased by some of the factors below:

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.

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

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

• frequent urination, particularly at night; • pain on urination; • blood in the urine;

More widespread disease often spreads to the bones and gives pain or unexplained weight loss and fatigue.

Causes of prostate cancer

• family history of prostate, breast or ovarian cancer; • a diet high in fats and low in fresh fruit and vegetables; • men of African descent are at higher risk than men of European or Asian descent; • high testosterone levels.

For prostate cancer clinical trials go to page 37

Information derived from Cancer Council Australia; https://prostate-cancer.canceraustralia.gov.au/statistics http://www.cancer.org.au/about-cancer/types-of-cancer/prostate-cancer.html#

A LITTLE BELOW THE BELT 19

The journey

Online support for testicular cancer survivors - free from stigma, widely accessible and convenient to use A diagnosis of cancer is a shock for anyone but when you are young, fit and healthy, it is the last thing you would expect. Beau Newell was almost 30 years of age, worked as a landscape gardener, regularly played football and was in good physical shape. So when he was BEAU NEWELL told he had testicular cancer he was in complete disbelief.

Unbeknown to him, testicular cancer is the most common form of cancer in young Australian men aged between 18 and 39 years.

He started treatment which included three rounds of chemotherapy. Time off work was required and football had to be put on the backburner. Beau said when diagnosed and then going through treatment, he was in shock and did not think to ask for counselling of any type.

Following his treatment he resumed all his activities and went back to work feeling well again.

helpful when he was initially diagnosed and was feeling incredibly ‘down and out’ but shock and the speed he went through his treatment meant Beau did not seek help to get his life back on track. However, second time around, when wondering ‘why did I have to get this’, Dr Grimison recommended counselling to Beau.

Even though 95 per cent of men survive testicular cancer, anxiety and depression are almost twice as common in testicular cancer survivors compared with the general population. One in five men feels stressed or down after finishing treatment for this cancer, but few seek help and two thirds of survivors report the need for help in adjusting after testicular cancer goes unmet.

Initially Beau saw a counsellor for traditional face-to-face counselling. As helpful as the counsellor was Beau just did not feel 100% at ease talking about his diagnosis with her – he felt uncomfortable speaking with someone he did not know and would often ask her to come back at another time. Dr Grimison then recommended e-TC 2.0.

Regular, routine follow-ups then took place and he was given the all clear. However at his 12 month check-up, following blood tests and CAT scans, he was presented with the news the cancer had returned. This time it had spread to his lymph nodes. Tackling the cancer the second time around brought Beau to the Chris O’Brien Lifehouse under the care of Dr Peter Grimison, a medical oncologist, who specialises in testicular cancer.

More chemotherapy was recommended followed by stem cell treatment. Facing a cancer diagnosis second time around was not quite as daunting for Beau as he knew what was ahead of him in terms of the treatment and his physical health. Counselling would have been extremely THE E-TC WEBSITE

20 A LITTLE BELOW THE BELT

The journey

I have found e-TC to be an incredibly valuable resource for survivors of testicular cancer who are suffering from anxiety, depression or fear of recurrence; as an adjunct or alternative to consulting with the psycho-oncology service. Some of the big advantages of e-TC over traditional counselling services and “generic” websites are that patients can access the resource in the comfort of their own homes at a convenient time outside of work and family commitments, the information is tailored to their life stage and disease issues, there are videos with other men who may have had similar negative experiences but learnt to cope, and patients can “dip in” to issues most relevant to them. Patients are made aware when signing up to e-TC that it is still in the research evaluation phase, and encouraged to give feedback. I also proudly tell them that e-TC was developed by researchers from a number of research centres around Australia including ANZUP, and patients and clinicians from a number of local hospitals, so it is very much “home-grown”. e-TC has the potential to form a very valuable part of testicular cancer survivorship. When my patients with testicular cancer complete treatment, I routinely talk about a number of survivorship issues: a planned surveillance program screening for recurrence, cardiovascular disease and hypogonadism; plans for returning to work or study and usual social activities; optimal physical exercise and diet; and monitoring and management of anxiety, depression, fear of recurrence and other unmet needs.

As with all survivorship programs, the challenge is to get patients to engage, but with reminders at follow-up visits I have found reasonable uptake of e-TC. Associate Professor Peter Grimison

The e-TC 2.0 website is an online psychological intervention for testicular cancer survivors. It has been developed by a team of cancer survivors, researchers and clinicians. The online program provides evidence-based information and psychological strategies for coping with the challenges associated with testicular cancer.

In the privacy and comfort of his own home Beau has been able to make his way through the six e-TC modules: 1. The Foundations Module (Putting together a toolkit to manage stress and worry) 2.

How you feel after treatment for testicular cancer

3.

Physical changes and side effects

4.

Masculinity and sexuality

5.

Relationships and intimacy

6.

Life after testicular cancer

Being a landscaper, Beau does not spend a lot of time in front of a computer but e-TC has been very straight forward and easy to use. He has also found the online program extremely helpful.

It has provided a lot of useful information. When in shock and having to absorb everything communicated by medical staff, it is often difficult to retain, remember, and utilise what you have been told. Beau said e-TC has been a great refresher of many things he had previously been told about testicular cancer and life after treatment, but had forgotten.

Going through cancer treatment and looking at life moving forward can be incredibly daunting and many patients feel alone and depressed. e-TC allowed Beau to see there were other testicular cancer survivors with similar concerns. He found it very helpful to read others opinions and realised he was not going through everything in isolation. “e-TC was really helpful. I forgot about a lot of the things from when I was in hospital. It gave me a great refresher. It was also really good to see other people on the website and understand how they handled their treatment and what they have done after it as well. It covers everything.”

Beau is now one year post-treatment and has returned to work and his day-to-day life. He is making his way through all the e-TC modules. He would recommend any testicular cancer survivor use this program as you can revisit and refresh your knowledge and the support required whenever you feel the need. Beau even believes other cancer survivors, not just testicular cancer survivors, would benefit from a program just like e-TC.

BEAU NEWELL POST TREATMENT

Recruitment to e-TC 2.0 is now open. If you are interested in being involved or would like to find out more about the study, please visit e-TC.org or contact Principal investigator of the study, Dr Ben Smith by phoning 02 8738 9244 or emailing ben.smith@unsw.edu.au

A LITTLE BELOW THE BELT 21

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?

Testicular cancer symptoms

After skin cancer, testicular cancer is the most commonly diagnosed cancer in men aged 18 – 39.

Each year approximately 800 men are diagnosed with testicular cancer in Australia. This equates to 1% of all cancers in men.

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

Germ cell tumours are the most common testicular cancers. Under a microscope there are two main types that are quite different when observed – seminoma and non-seminoma cells. Seminoma cells usually occur in men aged 25-45 but can also occur in men over the age of 60. This form of testicular cancer develops more slowly than non-seminoma cancers. The faster developing, rarer form, of testicular cancer occurs in younger men in their late teens and early 20s.

In 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.

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

Less common symptoms include: • feeling of heaviness in the scrotum; • swelling or lump in the testicle; • change in the size or shape of the testicle; • feeling of unevenness; • 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.

For testicular cancer clinical trials go to page 33

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

22 A LITTLE BELOW THE BELT

DO YOU HAVE A STORY YOU COULD SHARE WITH OTHERS? Share your story with us here anzup@anzup.org.au Create awareness and let others know they are not alone

FIGHT CANCER

BELOW THE BELT • T E S T I C U L A R • P R O S TAT E • B L A D D E R • K I D N E Y • 14 A LITTLE BELOW THE BELT

A LITTLE BELOW THE BELT 23

The Below the Belt Research Fund welcomes two new innovative projects for bladder cancer Bladder cancer often starts with just the superficial lining of the bladder and with early detection can be treated and cured by removal.

If the cancer has spread to other parts of the body then it is usually not curable, although it can respond to available treatments.

Better treatments do need to be developed and this involves performing clinical trials.

Every cent ANZUP raises through the Below the Belt Pedalthon goes directly towards clinical trial research. This year, the Below the Belt Research Fund has provided much needed seed funding to support seven ANZUP members to progress new trial ideas to the point of becoming full scale studies.

Two ANZUP bladder cancer studies received funding through the Research Fund in 2017 to help improve outcomes for patients following bladder removal (cystectomy).

Exercise medicine prior to bladder removal surgery led by exercise physiologist Professor Dennis Taaffe

Australia’s first national database to analyse bladder removal outcomes led by urologist Professor Dickon Hayne Removal of the bladder as treatment for bladder cancer may be necessary to PROFESSOR cure the disease. However this remains DICKON HAYNE one of the most major procedures performed by urologic surgeons and carries significant risks for patients. Despite this, there is currently a lack of quality research to identify ways to improve patient outcomes.

The purpose of this study is to set up Australia’s first national secure online database to allow investigators to analyse treatments currently used by urologists and their associated outcomes and complications after bladder removal.

This information will then be used to support planning, administration and delivery of future clinical trials in this area.

Bladder removal surgery as a treatment for bladder cancer is associated with PROFESSOR high complication and hospital reDENNIS TAAFFE admission rates, as well as significant risk of illness and death. This risk is increased for patients with poor physical fitness or overall function.

This innovative study will test the benefits of a supervised fourweek pre-surgery 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 ANZUP-led multicentre Phase III trial.

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 ANZUP-led multicentre Phase III trial.

24 A LITTLE BELOW THE BELT

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

What is bladder cancer?

Bladder cancer symptoms

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

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

Bladder cancer takes different forms: • u rothelial 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 • s quamous cell carcinoma begins in the flat, thin cells that line the bladder

Other less common symptoms include: • problems emptying the bladder; • a burning feeling when passing urine; • need to pass urine often; • back pain or lower abdominal pain

• a denocarcinoma is a rare form which starts in mucusproducing cells in the bladder.

Causes of bladder cancer

The stats

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

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.

• smoking;

In 2017 it is believed 2,995 cases of bladder cancer will be diagnosed in men and women combined. This will increase to 3,084 in 2018.

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

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.

• u se of the chemotherapy drug cyclophosphamide;

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.

• diabetes; • family history;

• chronic inflammation of the bladder.

For bladder cancer clinical trials go to page 30

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

A LITTLE BELOW THE BELT 25

New kidney cancer trials UNISoN study targets new treatments for rare kidney cancers For patients diagnosed with cancer, the future can be uncertain. For the 25% of kidney cancer patients with non-clear cell renal carcinoma, it can be even more traumatic as there are no treatments currently reimbursed in Australia for these rare forms of cancer.

The two part trial will first determine how well one immune treatment (nivolumab) works alone. If it is unhelpful by itself, patients can continue taking nivolumab in combination with a 2nd immune treatment (ipilimumab).

Working with ANZUP, in collaboration with the Centre for Biostatistics and Clinical Trials (BaCT), Hunter-based medical oncologist Dr Craig Gedye has dedicated the last 18 months to developing a clinical trial to try to change that.

“We will test how many people will benefit from one drug alone, and by doing detailed laboratory testing of people’s cancer samples, hope to also learn how to predict who will only benefit from taking both treatments together,” says Dr Gedye.

The ANZUP UNISoN trial opened on 20 October 2017 at the Calvary Mater Newcastle, with up to 19 more sites in Australia and New Zealand expected to follow in the coming months.

“Imagine being told you have cancer… and then being told there is no treatment available because it’s a rare kind of cancer,” says Dr Gedye.“ As a clinician, I’m always frustrated when I have to say this, and so it’s one of the many reasons I’m driven to find a better way.”

Over the next two and a half years the UNISoN trial aims to recruit 85 patients to test whether new immune treatments can help people with non-clear cell kidney cancer.

26 A LITTLE BELOW THE BELT

Nivolumab and ipilimumab have previously been used alone or together in many cancers; however they have not been tested in people with non-clear cell kidney cancers.

As part of the trial, the Hunter Cancer Biobank will assemble patients’ tumour blocks and blood tests, building a valuable resource to look in depth at each person’s cancer to see why the treatment did or didn’t work. This correlative data will help expand understanding of the treatment of non-clear cell kidney cancer, and may support further research and trial development.

“This is a rare cancer, so we suspect it will take a long time to recruit patients,” says Dr Gedye. “But it’s absolutely fantastic to have achieved the milestone of opening the trial. We hope it will provide further key pieces of evidence to understand how the immune system works in cancer treatment, and how we can harness that to offer patients with these rarer kidney cancers a unique therapeutic opportunity.”

UNISoN trial eligibility Adults with metastatic non-clear cell renal cell carcinoma with no history of significant autoimmune disease and no previous treatment with immunotherapy. If you think you are eligible for this trial please talk to your treating team.

Immune therapy key in clear cell kidney cancer KEYPAD trial The commonest kind of kidney cancer is clear cell kidney cancer. Despite increasingly being detected on scans, up to half of people with clear cell kidney cancer will die of their cancer. It is a statistic which has led medical oncologist Dr Craig Gedye to pursue more research to improve patient outcomes.

As immune therapies have been shown to be effective in about a quarter of patients with clear cell renal cell carcinoma after the standard treatment has failed, Dr Gedye’s research focuses on boosting that efficacy.

“What we’re learning about immune treatments is that they don’t necessarily depend on the kind of cancer; rather they depend on whether the person’s immune system is ready and waiting to attack the cancer,” says Dr Gedye. “Immune therapies act like kung fu – they can sometimes teach a new trick to the immune system to attack the tumour in your body but most often they unlock your body’s existing immune response.”

The KEYPAD trial, in collaboration with NHMRC Clinical Trials Centre (CTC), will test if a drug usually used to treat osteoporosis (thinning of the bones) can team up with immune therapy to improve survival and increase the chance of the clear cell kidney cancer shrinking.

In the trial, people with advanced clear cell kidney cancer will be offered treatment with two antibodies (a type of protein): pembrolizumab (Keytruda) and denosumab (Xgeva). The study will question 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 the two antibodies the immune system will be able to work better in the tumours.

Blood and cancer samples will also be collected from each patient to better understand who has benefited and who has been failed by the treatment combination.

The trial aims to recruit 70 patients over a two year period at 15 cancer centres.

Focus on Dr Craig Gedye, medical oncologist at Calvary Mater Newcastle DR CRAIG GEDYE

How did the concepts for KEYPAD and UNISoN come about? What are the important facts about these two trials?

Seeing the benefit of immune therapy in some cancers, we decided to test different ways to extend this benefit for renal cell carcinoma, going in two directions. Firstly, we worked to bring together denosumab, with the newer immune treatment pembrolizumab to see if the combination works better. Secondly, while we know that immune therapy helps some people with clear cell kidney cancer, we don’t yet know if it will help people with nonclear cell renal cell cancer.

What do you ultimately hope to achieve with these trials?

We hope to improve immune therapy for more people with kidney cancer. When the trials are finished we will also study the tumours and blood samples of each patient, to try to predict who will be helped with current treatments, and who might need different approaches. This will help more patients now, and enable us to design more effective clinical trials in the future.

What drives you to put in all the hard work to turn a concept into a trial?

The extraordinary opportunity to be part of the scientific process in such an amazing way – all science is a step into the unknown, usually a small step, occasionally a giant leap. You might be right. You might be wrong. If you are wrong, you have learned something important that helps you and other scientists. If you are right you have learned something important that helps people with cancer. Win-win!

DR CRAIG GEDYE PRESENTING AT ANZUP’S ANNUAL SCIENTIFIC MEETING

KEYPAD trial eligibility Adults with unresectable or metastatic clear cell renal cell carcinoma with no history of significant autoimmune disease and no previous treatment with immunotherapy.

If you think you are eligible for this trial please talk to your treating team.

A LITTLE BELOW THE BELT 27

Spotlight on kidney cancer Kidney cancer was the 9th most commonly diagnosed cancer in Australia in 2013.

In 2017, it is estimated it will remain the 9th most commonly diagnosed cancer.

What is kidney cancer?

Causes of 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.

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

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.

• S moking – Up to one-third of all kidney cancers are thought to be related to smoking. People who smoke have almost twice the risk of developing kidney cancer as non-smokers.

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

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

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

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

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

• I nherited conditions – About 3–5% of kidney cancers occur in people with particular inherited syndromes, such as von Hippel-Lindau disease, Birt-Hogg-Dubé syndrome, and hereditary papillary RCC. • E xposure to toxic substances at work – After regular exposure to certain chemicals, such as arsenic, cadmium or some metal degreasers, the risk of kidney cancer may be higher.

Most people with kidney cancer have no symptoms.

Many are diagnosed with the disease when they see a doctor for a different reason.

Symptoms may include: • blood in the urine (haematuria); • p ain or a dull ache in the side or lower back that is not due to an injury; • a lump in the abdomen; • rapid, unexplained weight loss; • constant tiredness; • fever not caused by a cold or flu.

For kidney cancer clinical trials go to page 35

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

28 A LITTLE BELOW THE BELT

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

Bladder cancer

Kidney cancer

l BCG + MM Trial

l UNISoN

l PCR MIB

l KEYPAD

Co-badged Trial

Co-badged Trial

l NMIBC-SI

l FASTRACK II

Testicular cancer

Prostate cancer

l P3 BEP

l ENZARAD

Co-badged Trial

l Pain Free TRUS B

l e-TC 2.0

l T heraP –

opening soon*

Trials now closed to recruitment l ENZAMET l BL12

* At the time of publication these trials were not yet open to recruitment. For updates on the status of these trials, including when they are open to recruitment, please refer to: http://www.anzup.org.au/ content.aspx?page=clinicaltrials

A LITTLE BELOW THE BELT 29

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 MMC on cure rates, survival, side effects and quality of life. This could potentially provide a simple and costeffective treatment for patients who suffer from this cancer. It is anticipated that 500 patients will be enrolled in the study in Australia and New Zealand. To date 146 patients have been recruited from 13 sites.

Current site locations for the BCG + MM trial: NSW • Concord Repatriation General Hospital • Northern Cancer Institute • SAN Clinical Trials Unit • Sydney Adventist Hospital Clinical Trials Unit • The Tweed Hospital • Westmead Hospital VIC • Austin Hospital • Epworth Healthcare (Richmond) • Footscray Hospital • Frankston Hospital • Royal Melbourne Hospital

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

• The Alfred Hospital

For more information, please go to the trials page on the ANZUP website: http://anzup.org.au/content. aspx?page=trials-bladder

• Fiona Stanley Hospital

ANZUP is collaborating with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) to conduct this study.

This ANZUP investigator initiated study is being funded

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

30 A LITTLE BELOW THE BELT

WA

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. The current standard treatment is a combination of chemotherapy and radiotherapy. 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

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

• Austin Hospital • Peter MacCallum Cancer Centre WA • Sir Charles Gairdner Hospital

It is expected that it will take two years to accrue the required 30 patients. To date, we have five sites active and recruiting and a total of 4 patients recruited.

ANZUP is collaborating with the Centre of Biostatistics and Clinical Trials (BaCT) to conduct this study.

For more information, please go to the trials page on the ANZUP website: http://anzup.org.au/content. aspx?page=trials-bladder

A LITTLE BELOW THE BELT 31

Current ANZUP trials

Bladder Cancer Co-badged trial NMIBC - SI Evaluation

Non-muscle invasive bladder cancer (NMIBC) makes up approximately 70-80 per cent of all bladder cancer diagnoses. Treatment is generally intended to reduce the risk of the 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 patient quality of life.

This study is currently active and recruiting. To date 170 patients have been recruited from 9 sites. 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: http://anzup.org.au/ content.aspx?page=trials-bladder ANZUP collaborates with Cancer Australia and Cancer Council NSW. This study is being sponsored by the University of Sydney through Western Clinical School, Westmead Hospital.

Current site locations for the NMIBC-SI trial:

This project follows on from Stage 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: • 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 • Royal North Shore Hospital • Westmead Hospital • Westmead Specialist Centre VIC • Austin Hospital • Monash Medical Centre - Clayton • Royal Melbourne Hospital

• 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.

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WA • Fiona Stanley Hospital QLD • Mater Hospital Brisbane

Current ANZUP trials

Testicular Cancer Testicular Cancer/Germ Cell* Tumours PHASE III Accelerated BEP Trial The current gold standard practice for the treatment of germ cell tumours is the use of the chemotherapy combination called BEP, which consists of three chemotherapy agents – Bleomycin, Etoposide and Cisplatin – administered on a three-weekly cycle.

BEP is given with a drug called pegylated G-CSF (or pegfilgrastim) that stimulates white blood cell production.

The purpose of this study is to determine whether giving the same dose of BEP on a two-weekly schedule will be more effective 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”.

Up to 500 patients will be enrolled in the study in Australia, New Zealand and other countries. Currently we have 27 sites open in Australia and New Zealand, and 41 patients enrolled. We are also undergoing negotiations to set up the trial in Ireland with the support of Cancer Trials Ireland and the Medical Research Council, Cambridge University, UK.

• Royal North Shore Hospital • SAN Clinical Trials Unit • The Tweed Hospital • Westmead Hospital QLD • Princess Alexandra Hospital • Royal Brisbane & Women’s Hospital SA • Flinders Medical Centre • Royal Adelaide Hospital TAS • Royal Hobart Hospital VIC • Austin Health

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

• Border Medical Oncology

For more information, please go to the trials page on the ANZUP website: http://anzup.org.au/content. aspx?page=trials-testicular

• Sunshine Hospital

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

• Fiona Stanley Hospital

This ANZUP investigator initiated study is being funded by Cancer Australia

• Box Hill Hospital • Peter MacCallum Cancer Centre

WA

New Zealand • Auckland Hospital • Christchurch Hospital • Dunedin Hospital

Current site locations for the P3BEP ANZUP clinical trial:

• Palmerston North Hospital

NSW

UK

• Calvary Mater Newcastle

• Addenbrooke’s Hospital

• Chris O’Brien Lifehouse • Concord Repatriation General Hospital • Macquarie Cancer Clinical Trials • Nepean 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.

• Prince of Wales Hospital

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Current 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 of, and satisfaction with, the e-TC website by men who have finished treatment for testicular cancer and who are feeling stressed, down or worried about their cancer recurring. Men will be recruited through clinicians at participating centres and online, via search engine and social media advertising.

Men who fulfil the study eligibility criteria will be given access to the e-TC website and, as they work through it, will complete brief questionnaires asking how they are feeling and their satisfaction with the site. In addition, participants’ psychological distress, quality of life and supportive care needs will 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. This study currently has 25 patients recruited. For more information, please go to the trials page on the ANZUP website: http://anzup.org.au/content.aspx?page=trialstesticular ANZUP is collaborating with the Psycho-oncology Co-operative Research Group (PoCoG) on this study.

If you are interested in being involved or would like to find out more about the study, please visit: e-TC.org

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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

Current ANZUP trials

DY U T WS E N

Kidney Cancer UNISoN

In this clinical trial ANZUP will test whether new immune treatments can help people with rare kidney cancer (‘nonclear 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.

Current site locations for the UNISoN trial:

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 second 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.

• Northern Cancer Institute

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.

NSW • Calvary Mater Newcastle • St George Hospital

VIC • Box Hill Hospital QLD • Royal Brisbane and Women’s Hospital SA • Adelaide Hospital /Ashford Cancer Centre Research We acknowledge BMS for providing the study drug.

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

ANZUP is collaborating with the Centre of Biostatistics and Clinical Trials (BaCT) to conduct this study.

This study is currently active and recruiting. To date 5 sites have been activated in Australia with further sites to be added.

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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.

This study is currently active and recruiting. To date 7 sites have been activated in Australia and New Zealand, with 22 patients recruited.

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

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

ANZUP is collaborating with the Trans Tasman Radiation Oncology Group (TROG) on this study.

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 most often 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.

36 A LITTLE BELOW THE BELT

NE WS TUD Y

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.

Current site locations for the KEYPAD trial: NSW • St George Hospital • Calvary Mater Newcastle VIC • Box Hill Hospital For more information, please go to the trials page on the ANZUP website: http://www.anzup.org.au/content. aspx?page=kidneycancerfastrackiitrial

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.

For more information please go to the trials page on the ANZUP website: http://anzup.org.au/content. aspx?page=trials-prostate

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 core morbidities. 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.

• Blacktown Hospital

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.

To date, 65 sites have been activated in Australian and New Zealand and 655 patients have been recruited. There are currently six sites open in Ireland, ten in the UK, led by the collaborative group, Cancer Trials Ireland, and two sites are open in the USA. This study is currently active and recruiting. Please speak with your doctor if this is of interest to you or someone you know.

ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the Trans-Tasman Radiation Oncology Group (TROG) 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

• Calvary Mater Newcastle • Campbelltown Hospital • Central West Cancer Services • Chris O’Brien Lifehouse • Genesis Cancer Care - Newcastle • Gosford Hospital • Liverpool hospital • Prince of Wales Hospital • Royal North Shore Hospital • St George Hospital • St Vincent’s Hospital - Sydney • Sydney Adventist Hospital • Tamworth Hospital • Westmead Hospital • Wollongong Hospital QLD • Genesis Cancer Care QLD - Tugun and Southport • Genesis Cancer Care QLD - Wesley and Chermside • Nambour General Hospital

A LITTLE BELOW THE BELT 37

Current ANZUP trials

• Oncology Research Australia, Toowoomba Hospital • Princess Alexandra Hospital Brisbane • Radiation Oncology Centre - Gold Coast • Radiation Oncology Services - Mater Adult Hospital • Royal Brisbane & Womens hospital • Townsville Hospital SA • Ashford Care Research (Adelaide Radiotherapy Centre) • Flinders Medical Center and RGH • Royal Adelaide Hospital TAS • Royal Hobart Hospital VIC

New Zealand • Auckland Hospital • Christchurch Hospital • Palmerston North Hospital Ireland • Beacon Private Hospital Dublin • Cork University Hospital • Galway University Hospital • Mater Misericordiae University Hospital • Mater Private Hospital • St. Lukes Hospital USA • Beth Israel Deaconess Medical Center (BIDMC) • Dana Farber Cancer Institute

• 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) • Ringwood Radiation Oncology Centre • Sunshine Hospital • Western Radiation Oncology Centre Footscray WA

UK • Addenbrookes Hospital • Charing Cross Hospital • 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

• Fiona Stanley Hospital Belgium • AZ Groeninge Kortrijk - Campus Kennedylaan

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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.

Current locations for the Pain Free TRUS B trial:

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.

• Westmead Hospital

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.

NSW • Concord Repatriation General Hospital

VIC • The Alfred • Casey Hospital WA • Fiona Stanley Hospital New Zealand • Canterbury Urology Research Trust

This study will include 420 men. Currently we have active sites across Australia and New Zealand with 156 patients participating.

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

This trial is open and recruiting. If you are interested in participating in the trial, please refer to http://www.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 39

OP EN ING SO ON *

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.

Sites soon to open to recruitment for the TheraP trial: VIC • Austin Health • Monash Medical Centre • Peter MacCallum Cancer Centre • Moorabbin Hospital

NSW • Liverpool Hospital • Royal North Shore Hospital • St Vincent’s Hospital QLD

We plan to enrol 200 participants in the study in Australia.

• Royal Brisbane and Women’s Hospital

ANZUP will be collaborating with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHRMC CTC) to conduct this study.

SA

We acknowledge and thank the Australian Nuclear Science and Technology Organisation (ANSTO) and Endocyte for their support of this study.

• Fiona Stanley Hospital

• Royal Adelaide Hospital WA

ANZUP is partnering with the Prostate Cancer Foundation of Australia (PCFA) to launch this important study.

We acknowledge ANSTO and Endocyte for providing the study drug.

*At the time of publication this trial was not yet open to recruitment. For updates on the status of this trial, including when it is open to recruitment, please refer to: http://www.anzup.org.au/content.aspx?page=clinicaltrials

40 A LITTLE BELOW THE BELT

Where to find your reliable health information online The Internet, for many people, has become the first place they go when searching for information. Almost any topic can be instantly accessed – including a plethora of cancer information. People facing cancer often use the information found on various sites to make decisions about their illness and treatment. But beware – some of this information is more reliable than others.

Top 10 Tips for Finding Credible Information

A lot of information on the internet is not backed up by careful science. Instead it is made up of salesmanship, testimonials, opinions and other information. So it is very important to choose your internet sources carefully and always remember that the information found on the internet should not take the place of medical advice from a healthcare professional.

.gov Government sites

.edu University/medical school/educational institutions

.org Not-for-profit groups with a focus on research

If you would like to find information about clinical trials relevant to you, a family member or friend, talk to any of the healthcare professionals involved in your care – general practitioners (GPs), specialists, nursing or allied health professionals. They should be able to provide general information about clinical trials and may have information on clinical trials that are relevant to you and point you in the direction of trusted websites.

Support groups or consumer health organisations with an interest in a particular disease or condition may also have information on trials, or be able to provide contact information for other patients who have been involved in trials.

1. The URL (web address) is a good signpost to a site’s credibility. Sites that have an address containing these elements will be reputable:

2. Identify, follow and source respected institutions in the relevant field (we have some cancer sites listed for you at the end of this article).

3. Seek out and check references and citations (basis of the research and sources). Make sure material is ‘evidence-based’.

4. If possible, look for any ‘declarations of interest’ in relation to the source of any financial assistance towards the production of the information.

5. Always remember to discuss the information you have found with your GP and medical specialist.

6. Beware of websites selling cures or health remedies.

7. Is there a privacy policy on the website? Ensure there is a privacy policy in place if a site requires you to register otherwise provide personal information such as your name or e-mail address. Also ensure your personal information and anonymity are protected and are not being provided or sold to other companies.

8. Check the ‘currency’ of the material: what is the date of publication; is it the most recent version?

9. Never divulge personal information online such as phone numbers, date of birth and addresses.

10. Be careful when and where you comment on information. Google archives everything! Be sure you are happy with what is said before you “publish”.

Always re-read what you write and ask yourself if you will be happy with your comments in the future.

A LITTLE BELOW THE BELT 41

Resources

Cancer Australia

ANZUP website – ‘Trials’ and ‘For Patients and Carers’ http://www.anzup.org.au/content. aspx?page=cancertrials%28patient%29 • A ll ANZUP (and ANZUP co-badged) trials by disease type (bladder, kidney, testicular and prostate) • E ach trial listed includes a lay summary and information you can print off and take to your doctor/health specialist for referral.

Australian Cancer Trials website

https://canceraustralia.gov.au/about-us/who-wework/consumer-engagement Has a range of resources to support consumers to understand and engage in cancer control, including videos and tools to assist consumers in navigating their treatment options and discussions with clinicians.

Friends of ANZUP http://www.anzup.org.au/friendsofanzup.aspx Friends of ANZUP is an initiative connecting a community of people whose lives have been impacted by prostate, kidney, bladder or testicular cancers . By joining you will receive information on the latest ANZUP publications, clinical trials, forums, and fundraising activities.

http://www.australiancancertrials.gov.au/ Hosted by Cancer Australia, the Australian government agency tasked with providing national leadership in cancer control, this website provides searchable information on the latest clinical trials in cancer.

Australian Clinical Trials website https://www.australianclinicaltrials.gov.au/ This site provides a searchable list of trials recorded with the Australian New Zealand Clinical Trials Registry (ANZCTR) and international trials listed on clinicaltrials.gov which have Australian sites.

It also allows you to set up an account and subscribe for new clinical trial alerts to be emailed to you.

Other websites Cancer Council http://www.cancer.org.au/

Kidney Health Australia http://kidney.org.au/

Prostate Cancer Foundation of Australia http://www.prostate.org.au/

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:

• Apple iTunes:

• disease (cancer type)

https:// itunes.apple.com/au/ app/ clintrial-refer-anzup/ id894317413?mt=8

• h ospital locations where patients are being recruited • c linical trial status (i.e. are sites actively recruiting or are they closed) • i nclusion/exclusion criteria (i.e are you suitable for the trial).

42 A LITTLE BELOW THE BELT

To download the free app, please visit:

• Google Play: https:// play.google.com/store/apps/ details?id=com.lps.anzup • Or go to the App/Android store and type in ANZUP

2017 fundraising champions Catherine McFarlane and the Kick Kidney Cancer campaign Earlier this year, Catherine McFarlane, went from juggling the roles of wife, mother, daughter, sister, dietician and PhD scholar to someone who could add cancer to her list of daily juggles and struggles. She was diagnosed with kidney cancer after undergoing a gruelling operation to remove part of her kidney. The cancer was picked up by chance a mere 3 weeks after she had completed her second half marathon.

In July 2017, Catherine, her husband Mark, along with their children, family and friends travelled from all over Queensland to participate in the Gold Coast Marathon weekend to raise funds for ANZUP Cancer Trials Group as part of the Kick Kidney Cancer Campaign.

The group of walkers and runners spanned every race across the weekend with many achieving personal best times.

Catherine and Mark, thank all those that made the weekend so much fun and everyone who sent messages of support and encouragement from afar.

The Kick Kidney Cancer campaign raised an amazing $7755 to support clinical trials which aim to improve outcomes for those diagnosed with kidney cancer.

Our congratulations to Catherine on her achievement and a huge thank you for supporting ANZUP.

Bec’s Troops and the Green Jelly Bean Challenge An Afternoon Tea with a difference!

A big thank you to all the troops who returned to have a fun afternoon tea, with Midori Champagne cocktails to start the green theme for the day. $2000 was raised for ANZUP whilst raising awareness of kidney cancer. Thanks also to those who donated to this great cause even though you could not join the day. We really appreciate everyone’s ongoing support.

Blackmores Sydney Running Festival On Sunday 17 September, team ANZUP with Gillian Bailey, Lucy Byers and Michelle Bowers participated in Blackmores Sydney Running Festival.

Michelle beat her personal best of 1:48:31 in the half marathon, followed by Gillian who ran the 10km in under an hour and Lucy thereafter.

The team raised $2387 for ANZUP which was directed to the 2017 Below the Belt Research Fund for new pilot studies and projects.

Michelle, Gillian and Lucy thank everyone for their support.

A LITTLE BELOW THE BELT 43

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, post-operative 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 find 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.

44 A LITTLE BELOW THE BELT

2017

The 2017 Below the Belt Pedalthon was a huge success ANZUP’s 4th Below the Belt Pedalthon was held on Tuesday 19 September at Sydney Motorsport Park, Eastern Creek. The day was full of energy with a brilliant competitive team spirit as 48 teams and nearly 300 riders cycled their hearts out on a perfect spring day on one of the most exciting tracks in Australia.

The aim: to ride to defeat 4 cancers (testicular, prostate, bladder and kidney) in teams of up to 6, challenging the participants to ride as many laps as possible in 3 hours followed by the sprint challenge in the last hour. An impressive 4176 laps were cycled.

The event was not all sweat and tears, with plenty of coffees and a fleet of masseuses on hand to alleviate any ailments, and a post awards lunch with lots of food and beverages.

Over $250,000 was raised this year (with donations still rolling in) which brings a total of over $1 million funds raised in 4 years.

With the success of the Pedalthon, raising awareness and funds, ANZUP has set up the Below the Belt Research Fund which provides seed funding to ANZUP members (clinicians / researchers) to kick start new trial ideas so they can gather the evidence which hopefully will lead to full scale studies. These funding opportunities simply wouldn’t be available without the Pedalthon.

This year’s successful study concepts include the development of a multi-disciplinary, web-based testicular cancer database to give an accurate overview of current Australian practices and facilitate research, 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 radical cystectomy (bladder removal) outcomes.

The Below the Belt Pedalthon was established to promote awareness of these common but ‘less glamorous’ cancers and to provide ANZUP with critical funds needed to improve the lives of so many. Every cent raised by the Pedalthon goes directly towards clinical trials research, which means straight into the hands of experts committed to treating testicular, kidney, bladder and prostate cancer.

ANZUP is delighted to announce they are launching the Pedalthon in Melbourne on Sunday 18 March 2018 at Sandown Racecourse, for more information go to www.pedalthon.org.au and for all those who would like to join us in Sydney next year, save the date – Tuesday 18 September 2018 – Sydney Motorsport Park, Eastern Creek or visit www.belowthebelt.org.au

A LITTLE BELOW THE BELT 45

Overview of the day Thank you to the 48 teams who competed in the 2017 Below the Belt Pedalthon.

Our thanks also go to our wonderful sponsors, Gresham, Pfizer and Astellas, our very generous event supporters and donors.

WITH THANKS TO OUR SPONSORS GOLD SPONSOR

SILVER SPONSOR

LUNCH SPONSOR

46 A LITTLE BELOW THE BELT

WITH THANKS TO THE 2017 TEAMS

Pedalthon - Tales from the track

THANKS TO OUR VERY GENEROUS EVENT SUPPORTERS

COMMUNITY TEAMS

Citric Cyclists

Cyclepaths

Has Beans

Has Beans 2

Has Beans 3

Has Beans 4

Pedalthon

Skid Marks 1

Skid Marks 2

A LITTLE BELOW THE BELT 47

Pedalthon - Tales from the track

4 years, 4 cancers, over $1 million raised Simon Clarke, Pedalthon Founder After having successfully organised 4 events in 4 years for 4 cancers and raised over $1 million dollars, it feels like an opportune moment to reflect on what has been a monumental period, both for myself and for Pedalthon.

Founding and leading the Below the Belt initiative has been an intensely personal experience. Having been through a cancer experience myself, I continue to be touched by real stories of loss, celebration and friendship. It has been an immense joy and a continuing inspiration to have created a platform that has enabled us all to give back and to gang up on this persistent curse of a disease.

Together, we should all be immeasurably proud of what our small team has achieved over the last 4 years — over $1,000,000 raised, funded multiple programs, featured on national media outlets and enabled a growing part of society to talk about all things below the belt. We are uniting the cancer research community in these target cancers and are advancing on ground-breaking steps for detection and treatment. In addition, we’re seeing a fundamental shift in how we talk about these cancers. These changes may seem small but when combined, and done early enough, are having a real impact.

48 A LITTLE BELOW THE BELT

I’m increasingly excited by the future of platforms such as Pedalthon and the real and lasting difference they can achieve.

Having seen the spirit and engagement of the community, and having worked closely with the team at ANZUP, I’m incredibly comforted by Pedalthon’s ability to transcend the opportunity. We didn’t set out to raise a million dollars. We didn’t even really start with a definition of success. We just wanted to get people together, share our story and to try and make a difference.

The platform for others to do similar fundraising or awareness efforts is as strong as ever whether it is continuing to support the Pedalthon event, hosting inter-office bake-offs or simply door knocking your suburbs, I have been inspired and thrilled by each of your efforts, however big or small. I encourage each of you to explore your passions and to utilise the power of ANZUP as a platform to deliver your cause and drive positive change.

I look forward to witnessing the success continue and am ever excited at the new ventures ahead.

Pedalthon - Tales from the track

Since 2014 IN 4 YEARS - OVER

OVER

1100

$1 MILLION

RIDERS

10

BELOW THE BELT RESEARCH FUND PROJECTS AWARDED FUNDING OVER THE PAST 3 YEARS

IN 2017 RAISED OVER

$250k

NEW CONCEPT DEVELOPMENT WORKSHOPS (how the new treatments are created)

100%

OF MONEY RAISED IS COMMITTED TO THE BELOW THE BELT RESEARCH FUND

A LITTLE BELOW THE BELT 49

Pedalthon - Tales from the track

L-R DR BEN SMITH, PROFESSOR LISA HORVATH, DR HARYANA DHILLON AND DR BEN TRAN JOIN THE RIDERS AT THE 2017 PEDALTHON

Below the Belt Research Fund Recipients Great ideas need funding to develop them further, so with this in mind ANZUP took on the challenge of seeding new projects through the launch of the Below the Belt Research Fund in 2015.

Funding to support the program is raised through the annual ANZUP Below the Belt Pedalthon in Sydney and our inaugural ride in Melbourne in 2018. The money raised supports new clinical trial ideas to allow them to move to the point of becoming full scale clinical trials.

Over the past three years, the Pedalthon has provided funding to support ANZUP members to progress 10 new trial ideas to potentially lead to full scale pilot studies. These studies aim to generate evidence to take the next step, to try new treatments or address patients’ psychological or supportive care needs.

50 A LITTLE BELOW THE BELT

ANZUP Chair Ian Davis said: “The wonderful thing about this fundraising initiative is that all of the funds that we generate go back to support research. We are trying to support the projects that are going to lead to future ANZUP trials and these will help generate the evidence we need to care for our patients better with these diseases.”

This year’s successful study concepts are extremely varied and some of these include the development of a multidisciplinary, web-based testicular cancer database to give an accurate overview of current Australian practices and facilitate research, 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 radical cystectomy (bladder removal) outcomes.

Pedalthon - Tales from the track

At the recent Sydney Pedalthon, four of the successful researchers joined the riders and supporters to update them on their projects.

Professor Lisa Horvath: Statins in Metastatic CastrationResistant Prostate Cancer (CRPC) PROFESSOR LISA HORVATH

It has been found that certain levels of specific circulating fats in the blood are associated with a worse prognosis in men with prostate cancer which has spread to other parts of the body, and is able to grow despite hormone therapy. The purpose of this study is to find out if a course of a drug called simvastatin (commonly used to treat high cholesterol, heart disease and diabetes) will lower the specific circulating fats in the blood associated with a worse prognosis. If the poor outcome could be reversed people with prostate cancer could potentially live longer.

Without the Below the Belt Research Fund this study would not be able to move forward. Lisa Horvath said, “This is a small study, it doesn’t get big impact with big peer reviewed grants, it’s not worth $1million, it’s worth a small amount of money. It’s crucial that we do this in order to move to the next really big study that will tell us if the drug is effective or not.”

Dr Haryana Dhillon: Patient perception of adherence to treatment advice in urogenital and prostate cancers: a qualitative exploration

study is looking at concepts not previously explored, acquiring funding has proven difficult. The Below the Belt Research Fund has made this adherence study possible.

Dr Ben Smith: e-TC, getting back on track after testicular cancer The Below the Belt Research Fund has helped Ben Smith and his team of researchers at ANZUP, start a study evaluating a website that equips men who have been affected by testicular cancer. This online program is filled with information and psychological strategies to help get their lives back on track once they have finished their treatment.

Ben Smith said: “The Below the Belt Fund has been really essential to getting this study off the ground. And hopefully once we finish this pilot study we’ll be able to conduct a further larger study evaluating the intervention across the world”.

Dr Ben Tran: iTestis – Bioinformatics for Testis Cancer iTestis is a user-friendly, multi-disciplinary, web-based testicular cancer database. Data collected within iTestis will provide an accurate description of current Australian practices, facilitate retrospective data research projects, seek to answer biological research questions and provide a platform for registry-based trials. It will also record tissue location information from germ cell tumour patients treated in Australia. Once established, iTestis will become a valuable resource to the wider germ cell tumour community and will be able to be used to drive other clinical trials.

The Below the Belt Research Fund means ANZUP could begin a trial within a much shorter time frame.

This means ANZUP could have the evidence and change outcomes for patients in a lot less time than it currently takes.

To read more about these successful projects go to: http://anzup.org.au/content. aspx?page=btbresearchfund “The thing with clinical trials are once you have done the clinical trial the work doesn’t stop there.

You have to keep planning ahead to think up what the next question is going to be. There is a bit of a lead time involved in doing this so we need to have a continuous pipeline of projects ready to go through. That’s where the Below the Belt Research funds help.” Ian Davis, ANZUP Chair.

DR HARYANA DHILLON AND DR BEN TRAN

It is important people with urogenital and prostate cancers complete their planned treatment and follow-up. This study will explore how to better support people to implement changes, comply with the advice they are given and adhere to drugs and treatments. It will explore patients’ thoughts about the advice they have been given and what may help or hinder their ability to adhere to treatment advice. As this

A LITTLE BELOW THE BELT 51

Pedalthon - Tales from the track

LAWRIE TREMAINE RIDING AT THE PEDALTHON

THANK YOU TO EVERY RIDER FOR YOUR FUNDRAISING EFFORTS.

Fundraising heroes Congratulations to Lawrie Tremaine from Origin Energy - our 2017 fundraising champion, raising an amazing $9,202.85!

Once again Clayton Utz blew fundraising off the track.

Congratulations to their women’s team Cilla, Madeleine, Bonnie, Jessica, Natalie and Annella who raised $11,425.36.

Fantastic work Clayton Utz - Women and thank you for being the highest fundraiser - 4 years in a row!

Top fundraisers Individuals

Teams

1. Lawrie Tremaine

1. Clayton Utz - Women

2. Cilla Robinson

2. Origin Peak Power Racers

3. Will Clarke

3. Team Gilbert + Tobin

4. Jess Champion

4. Skid Marks

5. Alex Procajlo

5. Kemp Strang

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THE CLAYTON UTZ – WOMEN’S TEAM

Pedalthon - Tales from the track

Champions of the track Congratulations to NSW Police Force who won the 2017 Below the Belt Champions! The team did 164 laps in 3 hours!

NSW POLICE FORCE

Congratulations to the other winners of the day • Individual Best Dressed: QBE Tandem bike riders • Best Dressed Team: Skid Marks • Fastest Lap - Male: William Fraser • Fastest Lap - Female: Belinda Diprose • King of the Mountain: Mitchell Dixon • Queen of the Mountain: Belinda Diprose • Most Laps - Male: Jason Smith • Most Laps - Female: Belinda Diprose • Community Team Winner: NSW Police Force • Diversified Team Winner: Designcycle • Industrial Team Winner: Origin Peak Power Racers • Professional Services Team Winner: Norton Rose Fulbright Racers • Medical and Pharma Team Winner: Pfizer Oncology Team Racers • Winner 2 Fastest Laps: William Fraser • Fundraising Team Champions: Clayton Utz - Women • Individual Fundraising Champion: Lawrie Tremaine • 2017 Below the Belt Pedalthon Champions: NSW Police Force

QBE DUO DAVE AND JOE

A LITTLE BELOW THE BELT 53

Pedalthon - Tales from the track

Kaarle McCulloch, Pedalthon Ambassador It is hard to believe I have now been the Pedathon Ambassador for 3 years. What an honour to be part of this incredible event and cause.

This year has seen a milestone of $1 million raised in 4 years, and I am so excited to be part of this achievement.

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.

A highlight from this year’s event for me was listening to stories from the researchers who are leading research projects from the money raised from the Pedalthon and how the funds raised is impacting upon those trials. To see where the funds go makes it far more personal and demonstrates the impact all the riders and supporters are making.

I’m looking forward to being a part of the inaugural Melbourne Pedathon next year. It makes me very happy to see the event expanding and touching even more people’s lives.

Wishing everyone a Merry Christmas and a Happy New Year. I look forward to seeing you all in Melbourne and back in Sydney next year!

Ride with us in Melbourne!

SANDOWN RACECOURSE SUNDAY 18 MARCH 2018

54 A LITTLE BELOW THE BELT

EVENT PARTNER:

www.pedalthon.org.au

Pedalthon - Tales from the track

QBE returns with 3 teams - Steve Elliott Over the last couple of years QBE have entered a few teams into the annual Pedalthon to raise funds and awareness for this great cause. This year QBE decided to support ANZUP by entering 3 teams and throughout the year there was heightened anticipation from staff to be part of a team.

This year there were a number of staff who were riding in the event for the first time, including myself. The day itself was extremely well run and catered for all levels of rider.

The course allows for a safe environment for riders to do their best over 3 hours and see how far they can ride. It was fantastic to see so many support staff and crew on the side of the track cheering us on, taking photographs, repairing bikes and supplying us with food and drink to keep us going.

The meal after the ride was fantastic and it was great to hear some powerful stories of how the funds are being used to improve the lives of people who suffer from these types of cancers. It was truly inspirational.

Well done to the ANZUP team on the organisation of an amazing event!

Welcome to the Waratah Masters

Welcome to NSW Rural Fire Services

- Graham Jones

- Dan Meijer

The Waratah Masters Cycling Club holds weekly race meetings for riders over 30 at Eastern Creek and other nearby venues. We are a classic bunch of “mamils” who enjoy our racing and post coffees to talk about our prostate’s and who has had the last medical procedure. So when we heard about the Below the Belt Pedalthon it really ticked all the boxes for us as it was a great day of riding and supporting a very relevant cause.

The NSW RFS team really enjoyed the Pedalthon. As an organisation based on helping the community we jumped at the chance to enter a team, which consisted of both staff and volunteer firefighters. The Pedalthon was wellprepared and well-organised; on the day team areas were well set up with seats and snacks, and were clearly marked so we could find friends from other organisations.

We usually race for about an hour each Sunday so a 3 hour event was a bit of a stretch for our 6 man team but we all enjoyed the challenge and finished with smiles on our faces like everybody else.

The atmosphere was fantastic and the organisation was brilliant so our thanks to all the organisers, helpers and volunteers. We raised a good sum for the cause and will be back again next year hopefully with more than one team. Perhaps more importantly we raised the awareness of ANZUP’s activities amongst our members, which has to be the main game.

Even though it was a competitive event, there was a great atmosphere of collaboration and all being in it together for a good cause. The emergency service category was great, and we enjoyed meeting and riding with colleagues from Police, Fire & Rescue, and Ambos.

We were tired at the end but it was worth every minute and every ache to raise money for an excellent cause.

The post-race lunch was terrific and we particularly enjoyed hearing from the researchers who had benefited from past fund raising efforts.

We are looking forward to next year’s event.

A LITTLE BELOW THE BELT 55

Pedalthon - Tales from the track

56 A LITTLE BELOW THE BELT

Pedalthon - Tales from the track

The stationary race to help defeat below the belt cancers For 364 days of the year, our Melbourne and Sydney offices work as a seamless national team. On Friday 1 December however battle lines were drawn.

For weeks leading into the competition, we participated in a healthy spattering of sledging and jest. Associate Georgia Simmonds enjoyed the anticipation, “there was a real buzz around the office in the week before the race, as we prepared to operate as a team on race day”.

On stationary bikes in our offices, the riders were thankfully spared the potentially negative impact of environmental conditions.

Battling the clock and each other, the Melbourne Mountaineers and the Sydney

Sprinters worked in teams, relay style, riding as far as possible in three hours, substantially increasing the kilometres ridden from the previous year. With the Melbourne Mountaineers ultimately crowned victorious.

Partner Paul Cutrone said “when attending the official Pedalthon became too complicated for the team, we had to come up with an innovative way to participate and stationary racing was born”.

The teams raised over $2,300.00 for the Below the Belt Research Fund.

If you would like to host your own office event please get in touch with the Pedalthon team by emailing pedalthon@anzup.org.au

A LITTLE BELOW THE BELT 57

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 2017 corporate supporters include:

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

Astellas, Bayer, Bristol-Myers Squibb, Ipsen, Janssen, MSD, Novartis, and Tolmar Australia.

Active Display Group, Bloke and The Saturday Paper.

58 A LITTLE BELOW THE BELT

Riding to defeat 4 cancers Testicular, prostate, kidney & bladder cancers All funds raised go directly towards clinical trials research benefiting ANZUP Cancer Trials Group in their efforts to improve treatments and outcomes for those affected by below the belt cancers.

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Ride with us in Melbourne at the Sandown Racecourse Sunday 18 March 2018

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EVENT PARTNER:

www.pedalthon.org.au

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SAVE THE DATE!

Join us at Sydney Motor Sports Park Tuesday 18 September 2018 www.belowthebelt.org.au A LITTLE BELOW THE BELT 59

Season’s Greetings from all of us at ANZUP Cancer Trials Group

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