A little below the belt Conducting clinical trial research to improve the treatment of bladder, kidney, testicular & prostate cancer
Riding to defeat 4 cancers AN ANZUP CANCER TRIALS GROUP PUBLICATION
ISSUE 6, DECEMBER 2016
THE GLOVES ARE OFF
CANCER DISCOVER THE LATEST IN CUTTING EDGE CLINICAL TRIALS LIVE COMMENTARY BY WORLD-RENOWNED UROGENITAL & PROSTATE CANCER EXPERTS
THE COMMUNITY ENGAGEMENT FORUM DIRECT FROM PULLMAN ALBERT PARK MELBOURNE
SUNDAY 16 JULY BOOK YOUR FREE PLACE
A N Z U P. O R G . A U
Book now at www.anzup.org.au. Tickets are free but bookings are essential.
Who 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 oncology, surgical, medical, radiation, nursing, psychology and allied health professionals working in urogenital cancer. Urogenital cancers are testicular, prostate, kidney and bladder. ANZUP’s work changes the way a patient with these cancers is treated. Our members and investigators are widely dispersed and busy, working in a range of disciplines. It is much more productive to get people together to work through the science, develop trial concepts and write the protocol documentation, and other things that need to be done, to bring a trial to fruition. All of this is separate from the other task of sourcing much larger amounts of money to support the actual trials themselves.
We thank and acknowledge Astellas for their invaluable support in 2016 in ensuring the dissemination of ANZUP’s consumer magazine “A little below the belt”.
We thank and acknowledge AstraZeneca for their invaluable support in 2016 in ensuring the dissemination of ANZUP’s consumer magazine “A little below the belt”.
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What’s inside 03 Who is ANZUP? 05 ANZUP; who we are and what we do – Chair, Ian Davis
Pictured above: Below the Belt Pedalthon, 2016. Read all about the day on page 57.
08 Consumer Advisory Panel update 09 In memorian – Tony Sonneveld OAM 10 2016 Community Engagement Forum 12 CEO update 14 The CAP’s insight into ‘Friend of ANZUP’ 15 The Journey – Five years on: John (Biill) McIllrath 17 Testicular cancer 18 ANZUP stage 1 testicular cancer surveillace recommendations 19 Radiotherapy for prostate cancer – research helps to make a good treatment even better
ANZUP Cancer Trials Group Level 6, Lifehouse Building 119-143 Missenden Road CAMPERDOWN NSW 2050 Phone +61 2 9562 5033
20 The Journey – My story: Travis Cohalan 24 A game changer in nuclear medicine 27 Summary 28 Whistling away pain – Pain Free Trus B 29 A shrinking success in bladder cancer 30 A new era of treatment: BCG + MM Trial
31 Treating a largely remote patient population 32 All eyes on kidney cancer research 33 Kidney Health Australia ‘Kidney Cancer, My Health’ handbook 34 Spotlight on NZ 35 What is a clinical trial? 36 What is a concept development workshop? 37 Optimal care pathway in prostate cancer
Published by ANZUP Cancer Trials Group Ltd. Copyright. Editors Lucy Byers and Steve Gibbons Graphic design by Designcycle
43 Current ANZUP Trials 53 Fundraising champions 55 What does a donation look like? 56 Corporate Sponsors and In-Kind Supporters 57 Below the Belt Pedalthon 2016
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ANZUP; who we are and what we do By the Chair of ANZUP, 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 trials. ANZUP is the Australian and New Zealand Urogenital and Prostate Cancer Trials Group and its purpose is to improve outcomes for anyone affected by below the belt cancers of the genitourinary system. More about us later… I had better be careful about a couple of things first, so here are some disclaimers. • W arning: you are entering a world that contains wee and rude bits - otherwise known as “the real world”. • T he bleedingly obvious: if not cured, these cancers are the cause of considerable illness, death, and distress for many people. They can be horrible and unfair. Spoiler alert: we are making great progress in improving outcomes for people affected by them. The below the belt cancers to which we dedicate ourselves include prostate, kidney, bladder and testicular cancer, as well as a few rarer cancers in the same general parts of the body. Two of these cancers occur only in men. All of them are more common in men than women. Women are definitely
affected by all of them, either through direct personal experience or by seeing the effect of these cancers on the people they love. The following are some of the most common cancers we see. Although outcomes for many have improved over the years, we believe there is still a long way to go to get to the place we want to be: to be able to treat all of them effectively so they no longer shorten people’s lives or cause misery to so many. It is interesting to look back at history, though. “Those who do not study history are doomed to repeat it”, said everybody’s history teacher at school. Let’s look at some of these cancers in more depth. • T esticular cancer. This is one of the most curable, but prior to the 1980s it was almost uniformly fatal. • P rostate cancer. This used to be almost untreatable once it had spread. Now it is highly treatable and, with current treatments, men have the chance to live longer.
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• K idney cancer. Up until as recently as the mid-2000s, this was also pretty much untreatable after it had spread. Survival has more than doubled since then. • B ladder cancer. Old treatments used to be way too toxic and people could rarely benefit from them. That is no longer the case. What do all these have in common? What made the difference? • T esticular cancer: discovery of a new class of drugs turned it from fatal to curable. • P rostate cancer: discovery in the 1940s that it responded to hormone treatment, and - over the past decade or so discovery of new life-prolonging treatments. • K idney cancer: discovery of critical changes in certain genes that pointed towards new types of treatments that work effectively in the majority of kidney cancers. • B ladder cancer: application of new drugs and ways of supporting people through chemotherapy, making it much safer and much easier for patients to tolerate. You can’t benefit from a treatment if it causes more problems than it fixes, so being able to deliver treatment safely meant that benefits could finally be seen. These advances did not happen by accident. They happened because we were not satisfied with previous outcomes. They happened because people carefully studied these diseases and understood how they behaved, and why previous treatments did not work or were too toxic. They happened because people took this laboratory knowledge and looked for ways to turn that knowledge into treatments. They happened because we did not automatically always assume that the new shiny thing was better: we only adopted new treatments once they had been shown to be superior to what we had before. All of this means that these new treatments come supported by strong evidence which we can pass on to our patients and help them make treatment decisions that are right for them. We are still not satisfied, however. Too many people still suffer and die from these cancers. We have to improve that. The only way this can happen is to continue to perform the basic research, come up with better ideas, and then test them properly to see if they work. The pharmaceutical industry understands this well and is behind much of the clinical trial work undertaken in our community. This is not a bad thing. I for one would be very happy to see a company get rich from curing cancer (as long as they are not bankrupting my patients in the process). It is in the company’s best interest to come up with new and better treatments.
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Sometimes, though, the questions that need to be answered are not the ones a pharmaceutical company would ask. They are looking for the big home run, and rightly so. We are, too. A company might be less likely to use an old established drug near the end of its patent life, or to work with another company, or to move into a disease type that for them is previously untested, or to look at the psychological or supportive care needs of the patient as the primary objective, or to look at a rare cancer that might not be a big market for them. Don’t be too harsh on those companies: those are sensible business approaches for company boards answerable to shareholders. ANZUP is different. We are made up of clinicians, scientists, and members of the community with an interest in caring for people affected by these diseases.
We are constantly surveying the horizon for new ideas and opportunities. We understand where the clinical needs are because we see them in our clinics every day. And we often come up with ideas that really need to be tested, but which a pharmaceutical company, for various reasons, could not or would not do. We take all this information and turn it into “investigatorinitiated trials” which we run, sometimes with resources from drug companies or other funding sources such as grants, but independently and for the sole objective of improving outcomes for people affected by these cancers. We do many of the kinds of trials you might conventionally expect, such as testing new treatments. We also do trials involving surgery, radiotherapy, hormones, immune treatments, and supportive care. We look at more effective ways of collecting information and putting it to valuable use. We take every opportunity to contribute to the work of the lab scientists, who continue to discover new and important aspects of these cancers that, in turn, suggest better treatments. We look at the financial implications of treatments on our patients and their families as well as the broader community. We listen carefully to the community, and we are committed to getting our research findings back out to you so that you know what we are doing and can advocate in support of this work.
Which takes me back to the spoiler alert. We are making real differences in people’s lives. We think we can still do much better. Hopefully by now I’ve hooked you, which means you are in for a treat as you dig deeper into this publication. You will read more about the broad range of work we undertake. You will hear from the people involved. You will get a taste of some of the new and exciting opportunities coming our way (or already here!) You will see some of the amazing initiatives that our patients and broader team have developed to help support the work we do. And if you think this is important, you will also find ways that you, too, can contribute and support us.
Although outcomes for many have improved over the years, we believe there is still a long way to go to get to the place we want to be...
Clinical research is time consuming and, unfortunately, very expensive. ANZUP is a not-for-profit charity and we exist with some Australian Government funding and the support of very considerable fundraising efforts. Nothing is handed to us; we need to raise funds for every trial we do. Look inside to find ways that you can contribute if you are moved to do so. This might be financial support, but there are many other ways you can contribute. For example, after reading all this, you might help us convince other people there is still a great need to do better in these cancers, and that advocacy for better support for clinical trials is the most direct and effective way to do that. You can help by contributing to our fundraising activities and there are many ways to do so beyond simple donations, although they are gratefully received! You can also participate in our activities, help raise awareness of these cancers and, specifically, the work of ANZUP, and continue to make the necessary noise to ensure more resources are provided for that work. More information about this can be found inside, or you can go to our web site. We aim to find a time where the spoiler alert won’t be needed any more, because everybody knows: that the wee and the rude bits are safely where they should be and no longer causing problems for people; and that the bleedingly obvious is relegated to a history that we never want to repeat. I hope you enjoy this edition of “A little below the belt.” Thanks for your interest in ANZUP.
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Consumer Advisory Panel update By the CAP Chair Belinda Jago
The ANZUP CAP – our involvement with ANZUP as the “patient” voice Members of the CAP are patients, survivors and carers, so the passing of one of our members reinforces the importance of our involvement with ANZUP as the “patient” voice. Clinical trials are an important element of the cancer journey for patients, but there are issues that require clarification for consumers.
The primary focus of the CAP is to provide ANZUP with a consumer perspective on clinical issues including: • T he relevance and focus of new trial concepts and protocols under consideration by the Scientific Advisory Committee (SAC) and sub-committees; • E nsuring the Patient Information and Consent Form (PICF) is easily understood by participants; • Identifying gaps in research; • L everaging networks to promote ANZUP and our trial activities; • A dvocating for urogenital cancer clinical trials and the ANZUP research program;
Broadly, clinical trials are research studies conducted on human volunteers designed to answer specific scientific questions that may lead to prevention, better diagnosis and development of therapies to treat many cancers.
• A ttending CAP meetings during the year and attending the ANZUP Annual Scientific Meeting (ASM);
The ANZUP Consumer Advisory Panel (CAP) provides a mechanism for provision of advice about specific studies, general research directions, and priorities from a consumer perspective. It also provides a conduit for communication from ANZUP back to the community in order to promote research and engage community support.
• W orking with ANZUP to improve community understanding.
• C ontributing to the ANZUP ASM and Community Engagement Forum;
As 2016 draws to an end, on behalf of the ANZUP CAP I wish all our readers a festive and safe holiday season with family and friends, and look forward to another great year for ANZUP in 2017. If you are interested in being involved with the ANZUP CAP, please contact ANZUP Chief Executive Officer, Margaret McJannett email@example.com
THE ANZUP CAP – L-R JASON GREY, LES LAND, ALASTAIR MCKENDRICK, LEONIE YOUNG, COLIN O’BRIEN, PETER STANFORD, BELINDA JAGO (CAP CHAIR), IAN DAVIS (ANZUP CHAIR), JOE ESPOSITO, MATT LEONARD, MARGARET MCJANNETT (ANZUP CEO), RAY ALLEN (CAP DEPUTY CHAIR) APOLOGIES: JOHN STUBBS
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In memoriam Tony Sonneveld OAM By ANZUP CEO, Margaret McJannett
Tony Sonneveld, ANZUP CAP member, lost his 13-year battle with prostate cancer on Sunday, November 13. Tony joined ANZUP’s Consumer Advisory Panel (CAP) in 2012 and was a tireless advocate for promoting prostate cancer awareness, education and the importance of clinical trials research. Tony had a successful professional career becoming Managing Director of Metlab Mapel and then General Manager of Transfield Electrical. In 2010, Tony was awarded an OAM for his services to “non-destructive testing” of pipelines, power stations, oil refineries and aircraft. On Tony’s 60th birthday he received the news that he had metastatic prostate cancer. Not to be deterred he decided to channel his abundance of energy into working with PCFA in an effort to promote and fund research, eventually becoming chair of the NSW Board. Loving a challenge, he also decided to work his way through his “bucket list”, tackling the Kokoda Trail, climbing Kilimanjaro and, of course, getting a team together and riding in ANZUP’s Below the Belt Pedalthon.
Tony told me earlier this year that he was determined he would make the Pedalthon and he did! Despite the disease clearly taking its toll, he and wife Viv drove out to Eastern Creek where he was able to catch up with Simon Clarke, Carol Dollar and the Sydney Markets team, as well as all his friends at ANZUP. We thank and acknowledge Tony for his invaluable contribution to the CAP and, more broadly, ANZUP. He was an inspiration, taking a tough situation and turning it around to help others. As he told the Australian Financial Review in 2013: “Burning the candle at both ends enables me to sleep well and not dwell on my disease.” From all of us at ANZUP our deepest sympathy to his wife Viv, and his children Michael, Mark and Rebecca (Bec), and of course those beautiful grandchildren of which he was so proud. He fought the good fight and did his very best. We are very grateful for having known him.
TONY IS PICTURED WITH SON, MICHAEL SONNEVELD AND SIMON CLARKE, FOUNDER OF THE BELOW THE BELT PEDALTHON.
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2016 Community Engagement Forum Each year, the ANZUP Community Engagement Forum (CEF) offers a unique opportunity for the general public to hear from a diverse panel of GU cancer experts who share their knowledge and answer questions. It’s a chance to discuss the importance of clinical trials and how they improve treatment for people diagnosed with prostate and urogenital cancers. In front of more than 70 attendees at the Brisbane Hilton Hotel in July, Belinda Jago, CAP chair, and Leonie Young, ANZBCTG’s CAP chair, opened the forum, inviting our panel of experts to present on the latest treatment and information and with plenty of opportunity to discuss the importance of clinical trials and the impact a diagnosis of prostate, bladder, kidney or testicular cancer can have on a person and their family.
Finally our thanks go to our Qld ANZUP members and our colleagues and friends at Cancer Council Queensland who promoted the CEF throughout their networks and assisted with a full house of local community members. The 2017 Community Engagement Forum will be held on Sunday, July 16, 2017 at the Pullman Albert Park in Melbourne. To find out more, or to reserve your place, go to www.anzup.org.au * Read Bryan’s story in the July edition of the magazine, available on the ANZUP website.
Professor Suzanne Chambers facilitated an excellent Q&A between Bryan Gibson, ENZARAD prostate cancer trial participant and Dr David Pryor, Radiation Oncologist at the Princess Alexandra Hospital, on the decision-making process when considering participation in a trial. Dr Haryana Dhillon provided some valuable insights and advice around sourcing credible information online and beyond.
COMMUNITY ENGAGEMENT FORUM PANEL
Professor Dickon Hayne gave the audience an update on ANZUP’s research highlights. Dr Richard De Abreu Lourenco from CREST talked about the costs of cancer care and why it is important to assist groups such as ANZUP. We are grateful to The Courier Mail and Jackie Sinnerton for the article ‘More money needed for research into below the belt cancers’ and for highlighting the Community Engagement Forum. Our thanks also to ABC Radio Brisbane and Rob Minshull for their support in running patient stories and promoting the Forum.
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BRYAN GIBSON AND DR DAVID PRYOR
Q: How did you become involved in a trial program? A: My surgeon referred me to the professor running the source trail and I agreed to participate. From a purely selfish point of view I would be monitored every three months so I thought this was a good trade-off for participating in the trial. Q: Why do this? A: I felt that I had not done anything in my life to assist in anything like this trial and would feel terrible if a patient could not have a better quality of life because I did not participate. Q: Any side-effects? A: A few, but nothing the support team did not get me through. Q: Any message for your listeners. A: Yes, go to your doctor, get tested on a regular basis. Caught early a lot of cancers can be fully cured.
PROFESSOR DICKON HAYNE
ABC Radio interview Anthony Frangi and Les Land, ANZUP CAP Member
Les practices what he preaches. He underwent a PSA test just recently with a series of scans and biopsies as directed by his doctor. The results came back and Les needed his prostrate removed. - thankfully, just in time. As Les says: “Go get tested when something doesn’t feel right”. For those seeking further information on kidney or prostate cancer, including material to understand the clinical trials and procedures, please visit the ANZUP website, www.anzup.org.au
Q: What were your symptoms that caused you to go to the doctor initially? A: I had a pain in the left shoulder blade which was becoming worse over time Q: What did the doctor do? A: He sent me for a series of tests and scans. From there I went to a surgeon who advised me that the problem was in such a position in the kidney that the whole left kidney should be removed. This was undertaken by keyhole surgery. Q: How are you now? Any problems? A: None. However I am more aware of what I eat and drink and try to keep an eye on my weight. I am extremely lucky that I went to the doctor and set things in place.
PROFESSOR IAN DAVIS AND LES LAND BEING INTERVIEWED AT ABC RADIO
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CEO update By the CEO of ANZUP, Margaret McJannett
ANZUP has once again had a remarkably busy and productive year, achieving some significant milestones thanks to the generosity and hard work of so many people. ANZUPâ€™s mission is to conduct clinical trial research to improve treatment of bladder, kidney, testicular and prostate cancers. 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 INNOVATIVE surgical procedures, EMERGING drug interventions and IMPROVED APPROACHES to management of urogenital and prostate cancers. Our Scientific Advisory Committee (SAC) and its subcommittees are the engine room of ANZUP. This is where our members bring new ideas and develop proposals that can turn into fully fledged protocols. We continue to power ahead with active trials in prostate cancer, urothelial cancer and germ cell cancer, with three trials well advanced in planning for renal cell cancer. These trials collectively involve thousands of patients, and thousands of hours of work and commitment provided by our members and their clinical and research teams. You will read more about our trials throughout the magazine or via the ANZUP website www.anzup.org.au We recently held a very productive face-to-face meeting to set the strategic direction of the SAC for the next 3 years including processes to be put in place to achieve this.
specific cancers we focus on, along with intensive full-day workshops on Quality of Life and Supportive Care. These workshops bring together our multidisciplinary membership to review and refine ideas and concepts, brainstorm new ideas, review the current trial and treatment landscape, and discuss around how the field might develop over the next few years. As a consequence, new ideas are being developed through working groups so we have a pipeline of new concepts coming through our SAC and sub-committees for further refinement. It is particularly gratifying to see that ANZUP is now in the position to help support this research activity. Our multidisciplinary membership continues to grow and at the time of writing this report we have just ticked over 1120 members. Whilst this is a significant milestone by any measure it is more about the fact that they are contributing in such a meaningful way. ANZUP is also very fortunate to have an active and engaged Consumer Advisory Panel (CAP). The CAP provides invaluable advice on specific studies, general research directions, and priorities from a consumer perspective. You can read more about our CAP on page 8. We announced an exciting new partnership between ANZUP and the Prostate Cancer Foundation of Australia (PCFA) - Australiaâ€™s peak prostate cancer charity - to work together to fund and implement vital clinical trials in prostate cancer.
Earlier this year, ANZUP held face-to-face Concept Development Workshops (CDW) across the four disease-
ClinTrial Refer app available for download from Apple iTunes: https://itunes.apple.com/au/app/clintrial-refer-anzup/id894317413?mt=8 Google Play: https://play.google.com/store/apps/details?id=com.lps.anzup&hl=en
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rial R Aust efer ra Urog lian & Ne wZ en Canceital and P ealand rosta r Tria ls Gro te up
We have signed a formal agreement and have pledged to work together to raise $1.5 million over the next three years. This partnership is truly a ground-breaking initiative that we hope will continue for years to come. We are very grateful to the PCFA board and CEO, Dr Antony Lowe, for ongoing support. Work is well advanced on protocol development and we will provide more details about the Lu-177 PSMA study once some resource questions have been addressed. We hosted our annual, free Community Engagement Forum in July which was enthusiastically supported by a large number of patients, survivors, family, friends and general members of the community. This forum is an important conduit for us to provide information to the public regarding ANZUP and ANZUP-led trials, on why clinical trials are important, and how we as medical, nursing and allied health professionals are trying to improve outcomes for our patients.
RIDERS READY TO START THE 2016 BELOW THE BELT PEDALTHON
In September, we held our third Below the Belt Pedalthon, and what an extraordinary day it was! With perfect spring weather we welcomed 300 riders and 49 teams at Eastern Creek Raceway to ride “4 hours to defeat 4 cancers”. We are extremely grateful to our founder Simon Clarke, his family, friends and their extensive networks, to Peter Grimison, Ian Davis, our donors, corporate supporters, our dedicated team of volunteers and, of course, our wonderful ANZUP staff who all worked tirelessly to ensure a very successful day. The Pedalthon has provided us with an amazing platform both in terms of raising awareness of these below the belt cancers and the importance of clinical trials but also much needed funds to support our research endeavours. To date we have received more than $300,000 with funds still coming in. I would encourage you to take a moment to view the Pedalthon video http://belowthebelt.org.au/ In 2015, as a consequence of the success of the Pedalthon, the ANZUP board approved the establishment
of the Below the Belt Research Fund. The funds raised from the Pedalthon were used to seed-fund three novel research proposals. Our inaugural awardees were: • B en Smith (e-TC project: online psychological intervention for testicular cancer survivors). • A ndrew Weickhardt (immune cells in chemoradioimmunotherapy of bladder cancer). • C armel Pezaro (primary treatment resistance in prostate cancer). We plan to commit all funds raised from this year’s Pedalthon to the Research Fund. This represents another key step towards achieving one of ANZUP’s aspirational goals: support for its own trials. More information on this is available through the ANZUP web site www.anzup.org.au Education and mentoring continue to be a major focus for ANZUP. We were delighted to host our second GU Preceptorship in Prostate Cancer. The one-and-a-half day workshop is designed to assist trainees and junior consultants to understand the evolution of management, and evidence behind contemporary clinical practice. There was rapid uptake of available spaces by trainees with great involvement by the preceptors and the everenergetic Eva Segelov, our Convenor and Preceptor Guru! We are also very grateful to Jeremy Shapiro (coconvener), Megan Crumbaker (assistant convener) and preceptors: Ian Davis, Amy Hayden, Jarad Martin, Gavin Marx, Declan Murphy and Henry Woo. Our thanks to our sponsors Astellas, Ipsen, Janssen and Novartis. Without their support it would not have been possible to host such a high quality event. We held our annual “Best of GU” evening symposium in Melbourne in October. The Best of GU is a collaboration between ANZUP and USANZ and provides an in-depth review of the highlights in GU cancers for the last year. It included fantastic presentations by clinical experts in their field. Thanks to the wonderful support we received from this year’s sponsors - Tolmar, Sanofi, Novartis, Janssen and Astellas – presentations were recorded and are now available on the secure section of our website. We are very proud of this our sixth edition of our community magazine ‘A little below the belt’. It is now distributed to our members, around 200 cancer centres, stakeholders and donors. We hope it provides important and accurate information on the work of ANZUP. Please let us know if you would be interested in having copies in your offices and/or waiting rooms. You can view the electronic copy on our website: http://anzup.org.au/ content.aspx?page=newsletter Best wishes for the Festive Season.
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The CAP’s insight into ‘Friend of ANZUP’ Ray Allen – Deputy chair, ANZUP Consumer Advisory Panel (CAP)
I am delighted to have the opportunity to provide a brief update about a new program we are planning to roll out in 2017. In line with ANZUP’s strategic plan to improve engagement with consumers, the ANZUP CAP is assisting our clinical colleagues to come up with innovative ways to better engage with the community. The Friend of ANZUP initiative has been aligned to the successful ANZ Breast Cancer Trials Group IMPACT program https:// www.bcia.org.au/content/191/impact-program. Connecting a community of people whose lives have been impacted by a prostate, kidney, bladder or testicular cancer, members will receive information from people who understand the challenges. It aims to provide: • Information about the benefits of clinical trials and how to access them; • Information about research conducted by ANZUP; • B iannual community magazine ‘A little below the belt’ featuring regular updates and stories from health professionals, researchers, cancer survivors and cancer trial participants; • Invitation to Community Engagement Forums; • P ractical resources to help those living with prostate and urogenital cancers; • R egular e-news and other resources deemed necessary to meet the aims of the network;
ANZUP members will be asked to promote and encourage their patients, carers and families who may be interested in learning more about ANZUP and the Friends of ANZUP program. Since my initial diagnosis, treatment and recovery, I have had time to reflect on many things, not the least of which was my unpreparedness for that diagnosis and - despite supportive family, friends and health professionals - the feeling that I was no longer in control. Despite the mountains of information available to me, very little of it seemed relevant. ANZUP, I am pleased to say, is cognisant that patient treatment needs to be much wider in scope than just surgical and or medical. Quality of Life concepts are given great weight in the development and conduct of our clinical trials. As a demonstration of this, I’d like to point the reader to an excellent publication ‘Facing the Tiger’ by ANZUP member and chair of the QOL sub Committee, Professor Suzanne Chambers. I wish this had been available when I was first diagnosed. My involvement with ANZUP is challenging, fun and personally very rewarding. I encourage all readers to support FRIENDS of ANZUP, and contribute whatever you can, be it through sharing experiences, active participation or supporting our research endeavours.
We will have achieved a major step forward if we can encourage people to ask the question: “Is there a Clinical Trial suitable for me?” To be a Friend of ANZUP please go to https://www.anzup.org.au/ content.aspx?page=friendofanzup
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Five years on: John (Bill) McIlrath GRACE, BILL, HARRY AND LAUREN, LIVING THE SWEET LIFE
John McIlrath’s conversation is littered with words that show he’s a country boy through and through. “Sweet”, “gold” and “if you don’t laugh you’ll cry” are just a few, with the latter phrase coming in very handy after he was diagnosed with metastatic testicular cancer in 2011. His Bendigo GP told him he had lung cancer, his oncologist told him he had a brain tumour and his specialist at Melbourne’s Austin Hospital filled him in on the finer points of his testicular cancer. Bill, as he is better known by family and friends, then embarked on a journey of epic proportions as what started out “below the belt” quickly moved north. “Dad was diagnosed with testicular cancer when he was 31, which is the same age I was when I was diagnosed,” the now 37-year-old says. “Dad’s brother died from an unknown cancer when he was 23 so we knew we had to be vigilant about checking for lumps.” In late 2010, he did discover a lump and a trip to the GP ensued. “She sent me off for an ultrasound but it didn’t show anything and I thought sweet, nothing to worry about,” he says. He delivered the good news to wife, Lauren, and the couple got on with life in their busy household with their children Grace, then 8, and Harry, 11. Weeks later, in early 2011, Bill developed a hacking cough which he dismissed, and aches throughout his body, which he also dismissed as the by-product of breaking up a large block of concrete in his backyard with a sledgehammer. A few days later, at work, he coughed then noticed a spot of blood on his shirt. “I thought nothing of it but the same thing happened again the next week,” he says. “It came up that night when Lauren and I were chatting to the kids about how their day had been and Loz asked me how mine had been and I told her about the blood.” Lauren immediately told him to make an appointment with the GP. The former Army corporal and senior constable with the Victorian police told her he’d go if she made the appointment.
“When I was in the Australian Regular Army, if you went to the doctor more than twice in six months they would treat you as a malingerer,” Bill says. “I’d already been that often in far less than six months.” The GP diagnosed pneumonia and sent him off for a chest X-ray. “After the test, the radiographer came to see me white as a ghost - and told me to go back to my GP straight away,” Bill says. “You know things aren’t right when you walk into a packed waiting room and the receptionist takes you straight into the doctor’s surgery and the doctor walks in minutes later.” Bill was told he had metastatic lung disease. “I said ‘Gold’ thinking at least it’s not pneumonia and I asked her what it was and she told me I had lung cancer,” he says. Bill knew cancers could be divided into two groups malignant or benign. “She said malignant and I had to ask her if that was the good one or the bad one,” he says, laughing. “She told me to make an appointment with the oncology department at Bendigo hospital and we’d take it from there. “I was driving home and hatching a plan to go to chemotherapy during my lunch breaks and then go back to work so no-one would have to know.” His plan meant Lauren would be kept in the dark about his diagnosis. His plan meant Lauren would be kept in the dark about his diagnosis. “Lauren was at work - she’s a hairdresser - and she was going to pick the kids up after school. I had no intention of telling them.” By the time his family walked through the door, Bill realised how ridiculous his “plan” was and said to Lauren that they needed to talk. Harry and Grace were sent outside to play and Bill told his wife the news.
A LITTLE BELOW THE BELT 15
More tests followed revealing that Bill had an aggressive form of testicular cancer, so aggressive that it had metastasised and killed itself in the testes prior to the ultrasounds, leaving scar tissue consistent with receiving a knock during a game of football. Further scans revealed numerous tumours in the lungs, abdomen and brain.
dumb to die.” Five years later, Bill laughs. “Looks like he was right.” Back to 2011 – the McIlrath’s annus horribilis. Bill wakes from the coma and continues chemotherapy for several months as well as undertaking intense rehabilitation to regain movement in his left side and learning how to walk again. The BEP treatment reduces the cancer count from 2.3 million to 11 before it starts climbing again as the treatment ceases to work. An attempt at a stem cell transplant was undertaken but failed as Bill couldn’t produce enough stem cells to transplant so the decision was made to undertake VEIP high dose-chemotherapy. After four cycles of VEIP the cancer count dropped to less than three, which is within the normal range.
Blood tests revealed a Beta HCG cancer count of 2.3 million, when less than five is considered normal for a male. Being a numbers person, Bill wanted to know his chances of survival and his oncologist told him it was five per cent.
BILL WITH HARRY AND GRACE
In mid-March 2011, he began chemotherapy in Bendigo. “The oncologist warned me to watch out for a ‘bang headache,’ which means the tumour in the brain had burst and was bleeding into the brain cavity,” Bill says. “They come on really quickly and are really painful. “When I got home and lay down, a bang headache hit within minutes and, while walking from the bedroom, my legs just stopped working. “Lauren shouted for my brother, Dean, who was outside with the kids, and he came racing in while she brought the car up to the house. “We were on the veranda and he was trying to pick me up like a baby to put me in the car. “I weighed 90 kilograms so I told him to just drag me along the veranda on my bloody bum.” Bill had sustained a massive bleed in his brain and he remembers nothing of the frantic efforts to keep him alive in Bendigo, or of the ambulance flight to Melbourne where Lauren was told that her husband’s chances of surviving the necessary brain surgery were very slim – and that if he did survive he would be severely disabled. Survive he did but he was in a coma for nearly a month, during which time the oncology department of the Austin Hospital continued to give Bill chemotherapy. The low point was when Lauren, Bill’s two brothers Rick and Dean, his sister Sally, his parents Roslyn and Peter, and other family and friends, were gathered at the Austin and were told that Bill had just hours to live as his lungs were failing and he was on 100 per cent oxygen. “My brothers came in to say their goodbyes - I was still in a coma - and Rick was leaning over me sobbing,” Bill says. Dean asked him why he was crying and he replied that Bill was dying. “Nah,” Dean said. “He’s too
16 A LITTLE BELOW THE BELT
BILL WAS IN A COMA FOR NEARLY A MONTH
The decision was made to operate on his right lung to remove some of the many tumours that had grown in his chest. Twenty tumours were removed, which was a record in the southern hemisphere. Biopsies revealed that they were necrotic: dead. The remainder of the tumours in both his left and right lungs are still there but presumed to be necrotic. This month - December 2016 - Bill’s nightmare will be officially over as he is declared five years cancer free, officially in remission, and discharged from oncology. Bill acknowledges that without the expertise of the fantastic staff at Bendigo Health and the Austin Hospital, as well as the love and support of all his friends and family, there is no chance he would be with us today. It’s been one hell of a journey for this boy from the bush but life is now well and truly “sweet”.
HAPPY TIMES FOR THE McILRATH FAMILY
Cancer of the testicle occurs commonly in younger men, but can present at any age. It is usually found as a lump that may or may not be painful. A lump in the testicle must be seen by a doctor urgently, and typically requires an operation to remove the testicle. Once it is removed, the exact nature of the lump can be determined and, if it is a cancerous growth, what other treatment may be needed.
Even though there are excellent treatments available, we still need to do better. This can only happen through understanding the science and by performing clinical trials to see which treatments are most likely to help. ANZUP is involved in clinical trials in testicular carcinoma through its clinical trials program. As always, you should talk to your doctor about what options might be best for you.
In broad terms, testicular cancers can be divided into two groups: seminomas and non-seminomas. Sometimes there can be a mixture of both. Testicular cancers can also contain benign growths called teratomas, which can contain all sorts of odd things, such as skin or hair, because the tumour has started from cells that are capable of forming whole humans. When a mistake occurs at cell-level, it results in a tumour and that tumour can resemble those sorts of tissues. Testicular cancers confined to the testicle are often cured simply by surgical removal, with no further treatment required. Your doctor will want to follow up regularly, however, in case you are one of the few people where the cancer returns. Depending on the situation, you might need to have some additional treatment after surgery, such as chemotherapy (drug treatment) or radiation treatment (radiotherapy). Again, this depends on the exact details of your case.
What to look for Common symptoms of testicular cancer: • Painless lump or swelling in either testicle • Change in how the testicle feels
If testicular cancer has spread elsewhere in the body it can still be cured by treatment, usually chemotherapy. This will involve more, and longer, treatment.
• Ache in the lower abdomen or groin area
Several decades ago, testicular cancer was a lethal disease. Today, because of new treatments tested carefully in clinical trials, it is almost always curable, even when it has spread. The cyclist Lance Armstrong is a great example of this.
Several conditions may cause these symptoms, but if you experience one of them see a doctor.
• Sudden build-up of fluid in the scrotum • Pain or discomfort in a testicle or in the scrotum
Source: Cancer Australia
A LITTLE BELOW THE BELT 17
ANZUP stage 1 testicular cancer surveillance recommendations
ANZUP have developed recommendations for the surveillance of patients who have been diagnosed with Stage 1 Testicular Cancer. We previously conducted a survey of Medical Oncologists in Australia to determine the patterns of management and surveillance imaging for stage I testicular cancer during 2010. There was considerable variation in the management of patients and the frequency of surveillance imaging amongst the medical oncologists surveyed. More than a third of clinicians recommended 10 or more computed tomography (CT) scans over a 5 year period. This frequency of CT imaging carries significant risk of radiation exposure, and is inconsistent with most modern international guidelines that recommend substantially less frequent scans. The newly published recommendations from ANZUP are for use within Australia and New Zealand by Medical Oncologists who usually provide care and follow-up for testicular cancer patients. The recommendations provide an evidence based standardised protocol for follow-up of Stage I testicular cancer which are based on the expected frequency, timing and pattern of disease recurrence and aims to minimise unnecessary radiation exposure. It provides a suggested follow-up schedule for both stage 1 seminoma and non-seminoma testicular cancer, and takes into account the administration of adjuvant chemotherapy. The recommendations include guidance on the timing of clinic visits, physical examinations, imaging, and blood tests (for both tumour markers and testosterone levels). Along with the recommendations, there is a handout available for patients which explains the purpose of surveillance and outlines the follow-up schedule.
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A customisable patient schedule is also available, which allows users to enter the patientâ€™s name, histology, operation date and use of adjuvant chemotherapy. An individualised patient follow-up schedule is then created using this information based on the follow-up recommendations. This includes the timing and dates of follow up, as well as what investigations will occur at each time point. It can be further customised as appropriate to the clinical situation. The use of a standardised protocol across Australia and New Zealand will provide a consistent level of high quality care in line with international guidelines. It will also provide a platform for potential future research. We plan to evaluate the use and acceptability of these recommendations in the future as well as repeat the survey to assess the change in management and surveillance patterns over time. The surveillance recommendations can be found on the ANZUP website http://www.anzup.org.au/content. aspx?page=stage1tcsurveillancerecommendations By Nicky Lawrence and Andrew Weickhardt.
Radiotherapy for prostate cancer – research helps to make a good treatment even better Associate Professor Jarad Martin, Radiation Oncologist
Radiotherapy is a safe and effective treatment option for men diagnosed with prostate cancer. A recent large clinical trial in the UK showed no difference in cure rates compared with surgery. A range of new technologies is also helping to make radiotherapy more accurate to protect healthy, normal tissues near the cancer such as the bladder and bowel. Radiotherapy can be delivered as an outpatient procedure in a matter of minutes, but traditionally there have been issues given that delivery has been required five days a week over an eight-week period. This can clearly make accessing radiotherapy difficult for some men – for example those from regional areas. The challenge, therefore, comes with exploration of whether more convenient, shorter radiotherapy regimens can offer the benefits, confidence and excellent results of longer treatment schedules. Promising new treatments are compared to standard approaches in clinical trials. In this case, Australia participated in a large international clinical trial called PROFIT which compared a standard eight-week course of prostate radiotherapy to a four-week alternative. In the shorter schedule, a larger dose of radiotherapy was given each day, with preliminary results suggesting good outcomes. Clinical research sets a very high bar in trying to define an improvement on standard treatments. Generally it requires a randomised study involving a large number of patients to deliver confidence that the new approach really does represent a step forward. PROFIT included more than 1200 men, with half receiving the eight-week treatment, and half the four-week approach. In Australia, PROFIT was coordinated by the Trans-Tasman Radiation Oncology Group (TROG) with support from ANZUP. After following the men for an average of six years, the team was pleased to report at ASCO, the world’s largest oncology meeting in Chicago in June 2016, that there were
no meaningful differences between the eight-week and four-week regimens. Disease control was exactly the same, and side effects were, if anything, a little better with the fourweek approach. This particular trial focussed on men with a particular type of prostate cancer termed “Intermediate Risk”, and many radiation oncologists in Australia are moving towards offering this four-week treatment to their patients. Also this year, another two similar clinical trials from the UK and USA studied similar approaches, and showed comparable results for men with both earlier and later stages of disease still confined to the prostate. On the basis of three large clinical trials studying nearly 6000 men for several years, these shorter radiotherapy regimens can be considered an emerging standard treatment approach. Further research is looking at compressing the number of visits for prostate radiotherapy even further. Using a technique called stereotactic body radiotherapy (SBRT), we have launched a study called SPARK which tracks any movement of the prostate to ensure highly accurate treatment. As part of this trial, the entire treatment is completed in just five visits. Although this type of treatment is common in North America, we are still working to ensure it is as safe and effective as the more established longer regimens. Only through ongoing clinical research conducted through groups such as ANZUP will we be able to continue to explore improvements in our cancer treatment options. Left: CT Scan of a prostate in red, with bladder in yellow, rectum in dark blue, and urethra (tube from bladder to penis) in yellow. The rainbow designates the radiation intensity (red=high intensity). Note that the whole prostate plus a 7 mm safety margin gets a high dose of radiotherapy, but that we can protect areas such as the urethra.
PROFIT was funded in Australia by competitive research grants from Cancer Australia and the Prostate Cancer Foundation of Australia.
A LITTLE BELOW THE BELT 19
The journey TRAVIS AND LAURA
My story Travis Cohalan
Being told you have testicular cancer with no evidence of the cancer in your testicles is even harder to swallow.
I thought the antibiotics worked initially – obviously the old placebo effect in action – but by the middle of June my chest was sore (which I thought may have been a torn pectoral muscle from lifting weights at the gym), the cough was lingering and I was experiencing severe night sweats.
My story started in May 2015 when I started to feel rundown and tired with all the classic symptoms of a cold or chest infection.
So I trudged to my GP again and he said I should have a chest X-ray because regular night sweats are far from normal for a fit 28-year-old male.
Being a self-proclaimed fitness fanatic who lived an active and healthy lifestyle, I was confident I would be able to shake it off quickly.
I went off for the X-ray not really expecting it to show anything – maybe pneumonia – and returned to work.
Being told you have testicular cancer is a kick to the nuts. Normally.
I was still able to play football for my beloved Mangoplah-CookardiniaUnited-Eastlakes (MCUE) Goannas, lift weights and work out daily. I was losing weight – without trying – and had a lingering dry cough but it was freezing cold in my hometown of Wagga Wagga, NSW, in winter and everyone around me seemed to have a cold, flu or infection of some description. I battled on and saw my GP twice – (he has been amazing throughout the whole process) – and the second time he gave me antibiotics in a bid to shake the chest infection.
20 A LITTLE BELOW THE BELT
After a couple of hours in meetings I checked my phone and had several missed calls from my GP. It was then I knew something was not right. Heart beating fast I called my GP who informed me I had a “huge mass” located in my chest and that he had already referred me to an oncologist at Riverina Cancer Centre. He said it looked as though I had a tumour – possibly lymphoma. The next week was a whirlwind of doctor’s appointments, frantic Googling and emotional heartbreak for my wife Laura and I, and our immediate families.
A fine-needle biopsy was completed a few days after the X-ray – a harrowing experience to be wide awake while a radiologist drills a needle into your chest – and more blood tests were ordered. After a few sleepless nights and attempts to keep things as normal as possible – work, playing and coaching footy, and so on – the oncologist informed me I had a mediastinal nonseminoma germ cell tumour. ‘Quite a mouthful. And quite rare as Laura and I were about to find out.’ The oncologist in Wagga was fantastic and although I could have started treatment there she referred us to Peter MacCallum Cancer Centre in Melbourne. She said it was a very rare type of cancer, she had never treated it before and “if it was me and my son I would be going straight to Melbourne to see a specialist in the field”. The decision was simple and made quickly. We were also fortunate Laura’s parents were in Melbourne so we could just pack our bags and get on the road without giving a second thought to where we would stay – even though at that stage we had no idea how long we would need to stay for.
TRAVIS AND LAURA TAKING ON NEW CHALLENGES
I had several CT scans – chest, brain, abdomen and an ultrasound of the testicles – and we left Wagga within a couple of days to seek out the specialist help of Associate Professor Dr Guy Toner and Peter MacCallum Cancer Centre. We met Professor Toner for the first time in early July and he told us the facts: every year in Australia around 800 people are diagnosed with testicular cancer and of those 800, around five to 10 are diagnosed with this rare type in the chest. The prognosis for this type of cancer is poor with around a 50 per cent five-year survival rate – this is in stark contrast to the 90 per cent plus cure rate of “normal” testicular cancer. We were obviously shaken, although probably aware of the facts as we had done – and still continue to do – plenty of our own research into the cancer. Professor Toner said the two options we had were to complete four cycles of chemotherapy with Bleomycin, Etoposide and Cisplatin (BEP) followed by surgery, if possible, or do nothing and almost certainly be dead within 12 months. Another simple decision really. We asked one pertinent question: “Have you successfully treated and cured this type of cancer before?” and Professor Toner replied that he had. This gave us a glimmer of hope.
TRAVIS AND HIS FOOTBALL TEAM
The Treatment From the beginning, Laura and I liked and trusted Professor Toner. He was – and still is – up-front, honest and gives you the information required in a factual and logical manner. We appreciate his honesty, knowledge and his brilliance as an oncologist. Professor Toner explained a clinical trial being run by ANZUP, which was being run to test the effectiveness of an accelerated BEP chemotherapy regime. Instead of having the chemo on a three-week cycle, as is the gold standard for testicular cancer, the trial was examining the effects of it being given every two weeks. The dosage amounts would not differ, Professor Toner said, just the time between each chemotherapy session. We signed up for the trial and I was randomly allocated to the accelerated group, meaning I would have my treatment every two weeks. This would give my body less time to recover but I was pretty fit and strong heading into it and was hopeful I would be able to handle it and tolerate the side effects. I am not quite sure of the right words to describe the almost three months of chemotherapy. It was the toughest thing physically and mentally I have ever done.
I had chemotherapy five days a week on a “treatment week”, and had to have one of the drugs every Monday, even on the “off-treatment” weeks. I likened it to the worst hangover imaginable only that it is ongoing and often it would take the full week after treatment for me to feel okay again – only to be ready to head in again for the next cycle. The side-effects I experienced were nausea, severe fatigue, reflux, diarrhoea, constipation and hair loss. I also went completely off several different food and drink groups, including coffee which I love, and started some weird food cravings for junk foods, which I normally don’t eat. Professor Toner said early in the piece I needed to try to exercise as much as possible during chemotherapy to help the drugs work their way through my system. On the off-treatment weeks, Laura and I would try to walk a loop of about seven kilometres every day but it was depressing to see what was becoming of my once fit self. I went from being fit and healthy to struggling to breathe on a walk. Nevertheless, we walked a lot and this gave us time to talk about things, and I certainly believe it also assisted the way in which my body processed the treatment.
A LITTLE BELOW THE BELT 21
The nurses and doctors at Peter Mac were nothing short of amazing and no amount of words I can write here would be able to describe my gratitude to them and my appreciation of what they do on a daily basis. They have one of the toughest jobs in the world and they do their jobs with a smile and encouragement. We developed a mantra which I needed to call on at several times during treatment – “Fight One More Round”. Before we left Wagga Laura had noticed it written on the back of my football coaching board and mentioned it to me. The words really resonated with us both and when I was struggling to get out of bed to go and face the next needle and bag full of drugs those words honestly kept me going. We became used to the schedule: weekly blood tests, fortnightly chest X-rays and lung function tests. We also had a weekly appointment with Professor Toner to discuss my treatment with a quick review of the tumour markers. The tumour markers quickly consumed our thoughts and we did plenty of research on AFP and bHCG in particular. My AFP was quite high at the time of diagnosis while my bHCG was also slightly elevated. The bHCG returned to normal fairly quickly but it took until my last dose of Bleomycin for the AFP to come down to a normal range. Following chemotherapy, we headed home to Wagga for around four weeks to rest and recuperate before the planned surgery on October 29 at St Vincent’s Private Hospital.
The Surgery Surgeon Mr Gavin Wright successfully removed the remaining tumour in about a five-hour operation. Mr Wright – and Professor Toner I believe – were surprised by how much the tumour had shrunk during chemotherapy. This meant Mr Wright was able to remove the tumour using a keyhole procedure instead of open chest surgery which would have required a longer recovery time. Even so, the surgery was no walk in the park and I spent one night in intensive care and then another four nights in hospital. The pain was bearable but I was pretty well drugged up and more anxious to know what the biopsy of the tumour showed. Following a few weeks of rest and recuperation we met again with Mr Wright who was happy with the result of the surgery. Later we met with Professor Toner who said the lab at Peter Mac could find no viable traces of cancer in the remaining tumour. I also had a blood test and my results were all in the normal range. Professor Toner asked me to think of myself as a “normal person” and do “normal things”. This news came in early December and it was by far the greatest Christmas present my family and I could receive.
Transitioning It is now just over a year since the surgery and I travel to Melbourne every three months for follow-up appointments with Professor Toner. It has been a difficult transition back into normal life and I don’t think things will ever return to the way they were. But I am happy trying to find my new normal.
22 A LITTLE BELOW THE BELT
I started lifting light weights again in mid-December and I walked and cycled a lot in the first few months of 2016 to try to rebuild some of my fitness. I am now proud to say I am back running and working out daily as I was before I became sick. I returned to work as an Area Manager for The Personnel Group in January and the support I have received from the organisation has been amazing. I certainly continue to have mental hurdles and there is always the nagging thought the cancer could return. Having coached MCUE’s reserve grade team for five years, I was fortunate enough to be appointed as the first grade coach for 2016 – and also 2017 – and this was a massive honour. The football club is like family to us and it is a privilege to be able to coach the senior team. I do get nervous before every one of my follow-up appointments and I have been to see my GP dozens of times in the past 12 months for a blood test to check on those dreaded tumour markers. It’s a double-edged sword as it creates anxiety while also helping to alleviate concerns. The brain is a powerful beast. The experience has definitely changed my outlook on life and I tend not to take things too seriously. I also try my best to do the things I enjoy most and spend time with the people who make me happy. During chemotherapy some of the stories I heard were both heartbreaking and amazing. Spending hours in a room with people who are literally fighting for their lives is harrowing but it outs perspective on life. Some of the older people who were having treatment would often say to me “you are too young to be here, you don’t deserve this”. My reply would always be the same: “nobody deserves this but cancer doesn’t discriminate”.
TEAM EFFORT: TRAVIS AND FRIENDS
TRAVIS ON THE FOOTBALL FIELD
Laura and I – along with my family – have dedicated a lot of time to fundraising over the past 18 months. We created our own wristbands – in the blue and gold colours of MCUE – with “Fight One More Round” proudly emblazoned on them and we managed to sell 500 to raise funds for ANZUP.
I was unsure about writing this article as I don’t really like the publicity and I don’t want to jinx myself either (as stupid as it sounds, but others in a similar situation will know what I mean). But if I am going to write it and have it published I think I need to formally thank the people who helped me get through treatment and surgery and to this point:
The Personnel Group – for holding my job open, supporting me and living up to being a real caring employer. MCUE Football Club – Football is a huge part of my life and being able to get straight back involved in such a prominent position has helped me recover both mentally and physically.
Laura – An amazing wife who is my rock. Without her I would not have had the strength or will to complete the treatment. It was some first year of marriage!
With the support of the football club we also held a Yellow and Pink Charity Game this year with specially designed player jerseys. The money raised from the sale of more than 100 jerseys and raffle tickets on the day was split evenly between ANZUP and the McGrath Foundation. We also continue to sell good old Cadbury chocolates on an ongoing basis with all funds raised going to ANZUP. ANZUP helped us in our time of need and we are determined to assist them as we believe in the together everyone can make a difference philosophy.
Family – We are lucky enough to have an extremely close, tight-knit and caring family and they were unbelievable with their positivity and support. Friends – See above. The messages of support, phone calls, texts, emails were unbelievable. Medical team – Professor Toner, Mr Wright, Dr Jonathan Ho, Dr Pat Renshaw, Dr Mary Ross (GPs in Wagga), Dr Hill (oncologist in Wagga), all the staff at Peter MacCallum Cancer Centre, all the staff at St Vincent’s Private Hospital.
TRAVIS AND LAURA ENJOYING LIFE
A LITTLE BELOW THE BELT 23
A game changer in nuclear medicine Jill Margo, Health Editor, The Australian Financial Review
Maxwell Findlay was riddled with cancer. Just look at the revolving scan below. The red shows how prostate cancer had spread through his body. That was in October last year and he was at the end of the line. On heavy medication to cope with bone pain, he spent most of the day asleep. With his PSA, the blood marker for prostate cancer, having rocketed to 967 he felt weak and without hope.
Next treatment But a couple of months ago, Robyn noticed he had begun slowing down. Ten months had passed since his last treatment and when they looked at the new scan half the red had returned. It was time for the next treatment at The Peter Mac, which is where he and Robyn spoke to the Financial Review.
Then an offer came along to join the first Australian trial of an experimental treatment for men with advanced prostate cancer who had exhausted all their options. It was for a disruptive technology in the field of nuclear medicine.
Findlay, a retired sports centre operator of Werribee, had seen his younger brother treated for prostate cancer and had watched as his father died painfully from it. Personally, he’d been living with it for eight years – if not longer – and was fearful.
Findlay, 78, happened to be a perfect candidate. In October and November he had two cycles of the treatment and, as the second scan shows, his cancer temporarily vanished and his PSA dropped to seven, almost within the normal range for his age.
Fighting back tears, he explained that in their blended family he and Robyn had seven children and 17 grandchildren. He described how rich the last 10 months had been and how he now hoped for more. The central question was now. How many more cycles he could have and how long he could expect them to last? “There is a high likelihood he will respond to the next cycle,” says Michael Hofman, an associate professor in nuclear medicine, who is leading the trial at The Peter Mac. On compassionate grounds, Findlay will continue to receive the treatment for as long as it appears effective.
ASSOCIATE PROFESSOR MICHAEL HOFMAN DOES NOT DARE DREAM THAT ONE DAY SOME MEN WITH EARLY PROSTATE CANCER MAY BE ABLE TO AVOID SURGERY OR EXTERNAL BEAM RADIOTHERAPY AND BE CURED WITH A DOSE OF LUPSMA. IMAGE CREDIT: JESSE MARLOW
He was back with the living. His wife Robyn, a former oncology nurse at Melbourne’s Peter MacCallum Cancer Centre, said she’d never seen anything work like this before. “Within a week he was up and cleaning the garage, without painkillers.” According to the trial protocol. Findlay was supposed to have another two cycles before six months was up, but he didn’t seem to need them. So treatment was halted while his doctors kept watch.
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While this treatment was pioneered in Germany four years ago, Hofman and Dr John Violet, a radiation oncologist at The Peter Mac, spent a year setting up this trial and treated their first patient only last September.
Changing standard practice A smaller arm of the trial is being run by Louise Emmett, an associate professor of nuclear medicine at Sydney’s St Vincent’s Hospital. This treatment falls into the category of “theranostics”, a term created from “therapy” and “diagnostics”. It enables doctors to see exactly where the cancer is and target it “exquisitely”.
MAXWELL AND ROBYN FINDLAY AT THEIR WERRIBEE HOME, FOLLOWING HIS LATEST TREATMENT. IMAGE CREDIT: PAT SCALA
THESE SCANS SHOW HOW EFFECTIVE AN EXPERIMENTAL TREATMENT CAN BE FOR ADVANCED PROSTATE CANCER. LEFT – THE RED REPRESENTS CANCER SPREAD IN OCT 2015. RIGHT – FIVE MONTHS AFTER TREATMENT THERE IS NO SIGN OF CANCER. AFTER ANOTHER FIVE MONTHS, HOWEVER, ABOUT HALF OF IT WAS BACK. SO THE PATIENT HAD ANOTHER TREATMENT.
It’s different to chemotherapy, which is blind and affects other parts of the body, and to radiation, which can cause damage to nearby structures. Hofman describes it as disruptive because it combines two elements, creating the potential to change standard practice. The first is a scan. While CT, MRI and bone scans are commonly used in the management of prostate cancer, this treatment uses a smart PET scan that can provide superior pictures and diagnostic capability. Prostate cancer expresses a unique substance on the surface of each cancer cell. This substance is called prostate specific membrane antigen (PSMA). The scan maps the cancer by finding these antigens and lighting up the cells they are attached to. It’s done with a radioactive metal called gallium-68, which is labelled to find the PSMA. When it is injected into a vein, it goes straight to, and is taken up into, the prostate cancer cells. Rather than turning its radiation on the cancer cells and killing them, gallium radiates out of the body and in the process lights up the cells so they can be detected on a scan, as illustrated by the red in Findlay’s images.
unload their radiation. These lutetium particles travel only one millimetre so they leave high levels of radiation in the cancer cells. It takes several weeks before their load is spent. During this time most normal tissue is spared. “For about two months, men passing through big international airports with sensitive biosecurity radiation monitors would set off the alarms,” Hofman says. This treatment is known as lutetium PSMA radionuclide therapy, or LuPSMA, and the aim of the trial is to test its safety and effectiveness. “We anticipate it will be well tolerated and effective,” he says. “In our early experience with it, no significant acute side-effects are observed, quality of life improves and pain decreases in the majority of patients with cancer-related symptoms. “But we don’t yet have data on the longer-term response and toxicity.” While German patients spend five days in hospital to receive LuPSMA therapy, on this trial Australian men receive it during a day admission. The new Peter Mac features a state-of-the-art facility dedicated for nuclear medicine therapies.
This radiation lasts for only an hour. These PSMA PET scans are already in limited use in Australia.
Like tiny missiles The second element of the treatment involves injecting a different radioactive molecule that lasts longer and is designed to kill the cancer cells. In the clinical trial, doctors inject lutetium-177 molecules that act like tiny heat-seeking missiles labelled to PSMA. They travel through the body and attach to cells with a high expression of it. Once attached, they are taken into the cells where they begin to
For a few days afterwards, because they are mildly radioactive, men have to restrict close personal contact with others, particularly with pregnant women or children.
No side-effects Findlay slept in a separate bed after his treatment and said he was otherwise well with no side-effects, apart from a dry mouth. Dry eyes and mouth can occur and usually resolve when the treatment is over. Two weeks after his recent treatment, Robyn reported his energy levels had increased, he was doing more around the house, was outside more often and taking the occasional walk.
REPRODUCTION OF THIS ARTICLE (HTTP://WWW.AFR.COM/LIFESTYLE/HEALTH/NUCLEAR-MEDICINE-COULD-BE-AGAME-CHANGER-FOR-ADVANCED-PROSTATE-CANCER-20160926-GROCV4 ) APPROVED BY JILL MARGO AND FAIRFAX.
A LITTLE BELOW THE BELT 25
LuPSMA is such an innovative treatment it isn’t easy to categorise as a treatment and poses a regulatory challenge to authorities. The lutetium-177 comes from the Australian Nuclear Science and Technology Organisation’s (ANSTO) nuclear reactor in Lucas Heights. At Peter Mac’s nuclear pharmacy a highly specialised radiopharmacist ‘’cooks” it up with a PSMA ligand imported from Germany. There is speculation that if it were used earlier in the cancer journey, before the disease had advanced, one dose of lutetium might be more durable because there would be less disease to treat. Hofman doesn’t dare to dream that, in the future, some men with early cancer might be able to avoid surgery or external beam radiotherapy and be cured with a dose of LuPSMA.
Dynamic field But this highly personalised therapy is not suitable for all men with advanced prostate cancer. It won’t work if their cancer doesn’t express enough PSMA and doesn’t light up on the gallium scan or if they are already too ill for treatment. Hofman says to date 20 per cent of men have proved ineligible for the trial and, of those treated, 70 per cent have responded well, like Findlay. “I think LuPSMA almost certainly will take off as a therapy. Prostate cancer is a dynamic field and is amenable to new technologies, more so than other areas of medicine,” he says. The current trial is almost closed for recruitment at 30 patients but Hofman is hoping to make LuPSMA available to another 20 to 30 with the support of ANSTO and Peter Mac. “The early results are spectacular. When patients who have failed all conventional therapies have rapid improvement following treatment there can be no doubt that the therapy is effective,” he says. “It will be very difficult to say no and tell patients the trial is closed when we know we can relieve their suffering with an infusion of LuPSMA.
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“The pathway to getting any new treatment funded and accessible is a long road. This is even more challenging with theranostic therapies which do not have support from large pharmaceutical companies.” LuPSMA grew out of similar treatment used for endocrine tumours for the past 10 years. Initially it was used for endstage patients but it is now a first-line treatment for some sub-types of neuroendocrine cancer at Peter Mac, which leads the world in this treatment. Professor Anthony Costello, head of urology at The Royal Melbourne Hospital, says it is “very early days for LuPSMA but if it is as good as it looks, it has the potential to be a game changer”. At Melbourne’s recent Asia-Pacific Prostate Cancer Conference, he says it made delegates sit up and pay attention, particularly the Americans as they don’t have it.
Life expectancy The pressing question is whether this therapy can be brought forward and given to men earlier in the course of their cancer. “We need to be judicious about where we place it in a man’s life expectancy because some radiotherapeutics can eventually cause cancer themselves.” It could be counterproductive for a man with a good life expectancy because while it may rid him of prostate cancer, down the track there’s a chance it may cause another cancer. Much work on weighing risks will need to be done. On the basis of promising results so far, Hofman and colleagues put a proposal to ANZUP Cancer Trials Group and the Prostate Cancer Foundation of Australia, which have formed a new clinical trials partnership and who agreed to fund a large randomised trial to test this therapy next year. Associate Professor Anthony Lowe, of the PCFA, says such a trial has a high chance of putting Australia at the forefront of this promising treatment. Read more: http://www.afr.com/lifestyle/health/nuclearmedicine-could-be-a-game-changer-for-advancedprostate-cancer-20160926-grocv4#ixzz4RYkcJqib
Summary Associate Professor Guy Toner, Medical Oncologist
Nuclear medicine utilises radioactive isotopes for diagnosis and treatment. It is most commonly used in diagnostic tests, and nuclear medicine departments frequently exist in close collaboration with other diagnostic imaging services such as X-ray and CT scanning. Many men with prostate cancer will have had a bone scan which involves administering a small dose of radioactive technetium to identify areas of abnormality in bone. Other common nuclear medicine diagnostic tests involve a range of isotopes and can be used, for example, to assess heart and kidney function or look for blood clots. PET (positron emission tomography) scanning is a newer nuclear medicine technology that is increasingly used as a diagnostic test for patients with cancer. The most common type of PET scan involves labelling glucose with a radioactive tracer to identify tissues in the body that have a high glucose uptake. Cancer is typically metabolically active and takes up more glucose than other tissues. Nuclear medicine can also be used to treat cancer. Radioactive iodine has been used for many years to treat some types of thyroid cancer. Radium-223 is a new nuclear medicine therapy that has recently been shown to improve the outcome for some men with advanced prostate cancer. Radium-223 is deposited in areas of abnormality in bones, and releases radiation that can destroy cancer cells in bone secondaries. Unfortunately, it is not yet widely available in Australia.
Australian nuclear medicine physicians are world leaders in developing nuclear medicine treatments for cancer. The article on pages 2426 is a report of a novel treatment for prostate cancer developed by Michael Hofman and colleagues. Prostate-specific membrane antigen (PSMA) was linked to a gallium radioisotope for diagnostic purposes, or lutetium radioisotope as a treatment, with assessment of both done using PET and CT scanning. The advantage of PSMA is that it can attach itself to prostate cancer in any part of the body resulting in a truly â€œtargeted therapyâ€?. The study described in the article has identified that this new approach is very promising. Associate Professor Hofman and a team of researchers applied to ANZUP for support to continue this research and have been awarded a Prostate Cancer Foundation of Australia (PCFA) joint development grant. ANZUP is currently working closely with the team to jointly undertake a clinical trial that will compare it to an established prostate cancer treatment as the next important step in its development. This is a complex undertaking but we are hopeful to have this important clinical trial open in 2017.
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Whistling away pain – Pain Free TRUS B Associate Professor Jeremy Grummet, Urologist
The diagnosis of prostate cancer is made by doing a biopsy. That means getting tiny samples of tissue from the prostate gland using a biopsy needle. This can be done under a general anaesthetic through the skin of the perineum (between the scrotum and anus) – a trans perineal biopsy – but is far more commonly performed via the rectum – trans rectal ultrasound-guided (TRUS) biopsy – because it’s not always easy to find time in an operating theatre and TRUS biopsy can be done in a urologist’s office in just a few minutes.
least of all when they are worrying about whether they have prostate cancer, or not.
The prostate sits right in front of the rectum, which is why we can feel it by doing a rectal exam. Fortunately, there are very few nerves that can sense pain in the rectum at the level of the prostate. That’s why over the years men have often undergone TRUS prostate biopsies without any pain relief or anaesthetic.
The advantage of using Penthrox™ is that its action onset is very rapid, occurring in just a few breaths. And it wears off just as fast, so that patients are not left feeling drowsy for hours after their procedure. Penthrox™ is also self-administered: the patient holds the inhaler in his mouth. This means that he can alter how much Penthrox™ he breathes in, depending on how uncomfortable he is feeling.
The bad news for these men is the prostate itself does have pain receptors! So even if you can’t feel a biopsy needle go through the rectal wall, you’re pretty likely to feel it as it punctures your prostate. Indeed, many men would describe prostate biopsy as the worst part of having prostate cancer – and these are guys who have since had major surgery as their treatment! As a result, giving local anaesthetic into the prostate is now considered a minimum standard of care when doing a TRUS biopsy. But even giving local anaesthetic is not always good enough. As specialists who perform these biopsies, we still see some men experiencing pain while we do these procedures. This occurs for two main reasons. First, you’ve got to inject the local anaesthetic in just the right spot to get a good pain block. It’s quite easy to miss that spot, even with proper training, which means that the local anaesthetic may not work as well as it should. And second, the local anaesthetic does nothing for the pain that is sometimes felt just by insertion into the rectum of the ultrasound probe. In 2016, with all the wonders of modern medicine available, we believe that there is no excuse for subjecting men (or anyone else) to unnecessary pain –
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That’s why we came up with the Pain free TRUS B clinical trial. This trial will test whether adding an inhaled painkiller (Penthrox™) to the standard prostatic injection of local anaesthetic reduces the overall pain, discomfort and anxiety of having a TRUS biopsy. We’re hoping adding Penthrox™ will take care of any pain not covered by the local anaesthetic.
The Pain free TRUS B trial is underway, with multiple sites across Australia and New Zealand involved and recruiting men. We plan to have the trial complete by 2018, when hopefully we’ll have found a way make TRUS B pain free! For more information on Pain free TRUS B, speak to your Doctor or specialist or visit www.anzup.org.au
A shrinking success in bladder cancer Associate Professor Andrew Weickhardt, Medical Oncologist
There have been some exciting developments in the treatment of metastatic bladder cancer by harnessing the body’s own immune system using a new class of drugs called PD1 inhibitors. These drugs activate the immune system to better identify the cancer cells and, in some patients, have led to very impressive shrinkages of cancer. To date these new drugs have been tried only in metastatic bladder cancer – and look likely to be approved to treat this condition in the coming years based on very robust and impressive trial results.
ANZUP has recently launched a world first trial combining a new PD1 inhibitor pembrolizumab with chemotherapy and radiation to increase the success rate of the treatment. By recruiting 30 patients at five different hospitals within Australia, doctors hope to demonstrate that the combination therapy is safe and well tolerated, and that the responses to this new combination will lead a larger confirmatory trial. If you or a member of your family would like to know more about the ANZUP led PCR MIB clinical trial, please discuss this with your GP or specialist. You can also contact ANZUP on 02 9562 5033 or refer to the website www.anzup.org.au and search under trial information.
In some patients the bladder cancer may spread deeper within the bladder but not more widely. Chemotherapy given at the same time as radiation to the bladder may be an attempted cure for these patients. Yet one in three treated this way still have a relapse. Potentially giving a PD1 inhibitor at the same time may activate the body’s immune system to fight the cancer.
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A new era of treatment: BCG + MM Trial Dr Laurence Krieger, Medical Oncologist
The field of oncology is in an era of rapid change. With an improved understanding of disease biology, the inherit flaws in a tumour which make it susceptible to destruction coupled with technology for new drug development, mean that the days of having very little to offer most cancer sufferers are fortunately a thing of the past. No longer is treatment limited to just chemotherapy, or radiotherapy (for which there are bewildering array of uses none the less), but the era of novel targeted therapy and immunotherapy has arrived. Manipulating one’s own immune system to recognise cancer cells and successful eradicate them, or to unblock the protective mechanisms that allow the cancer cells to hide from the immune system (and cancer cells are very sneaky in this respect), have revolutionised the prognosis for melanoma, lung and kidney cancer sufferers, to name but a few. However, immunotherapy is not new. BCG treatment, delivered into the bladder via a catheter, usually for several hours on a weekly basis initially, has been a successful strategy for many sufferers of early bladder cancer (tumour cells confined to the inner lining of the bladder), for decades now. In fact, using a vaccine to stimulate an immune reaction and thus kill tumour cells is the oldest form of immunotherapy and remains the backbone of treatment for patients with curable, early bladder disease. This approach offers the chance of cure, or durable remission and avoidance of bladder removal or an alternative radical approach of chemotherapy with radiotherapy. Unfortunately, 30% of patients having BCG treatment will still relapse and roughly 15% of all patients will have disease that is truly unresponsive, despite additional courses of BCG. Yes, there are new and exciting agents that are potentially changing the landscape, even in the very early bladder setting. But one question that always has to be asked is whether we can do better with what we already have? The answer is often yes. There is a variety of chemotherapy drugs for which bladder cancers as a whole can respond to, and in certain situations, these drugs are infused into the bladder too. So why don’t we combine these two mechanisms of action (immunotherapy and chemotherapy) to reduce the number of patients needing to face more radical approaches to cure?
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Mitomomycin (the chemotherapy) and BCG (the immunotherapy) are ‘old’ drugs and readily available. They are also relatively cheap (and the burgeoning cost of new treatment cannot be under-estimated). Previous trial work suggests that alternating between the two agents may reduce the recurrence rates further. The ANZUP sponsored trial was thus born, to try and definitively answer whether we can combine these two safely with benefit to our patients. The question is simple. Does the combination of BCG and Mitomycin decrease the risk of recurrence (for early stage) bladder cancer, compared with BCG therapy alone (standard of care)? If so, does this come at a cost? For example; are there additional side effects? Is there a difference in quality of life? Could the combination be detrimental or simply no better? As such, for those patients that are suitable and willing, half will be randomised to receive BCG alone and half, the combination. So what is in it for the patient? First; there is no ‘placebo’ arm so the ‘worst case scenario’ is they will receive standard BCG. Second; if randomised to the combination, they will have access to Mitomycin, which while relatively cheap in drug terms, is not funded by the benefits scheme in Australia. Those receiving both drugs have access to a novel combination that may become a new standard of care in the future. On the downside, there may be no advantage or additional side effects that have not yet been recognised (although both treatments are generally very well tolerated in their own right). The third benefit, as with any patient on a trial, is that patients are monitored very closely. In fact, the relationship between patient, trial nurses, investigators and allied health not only serves to minimise potential harm from experimental drugs or novel combination of new or old, but engenders trust, a sense of security and improved outcomes for many participants in its own right. Clinical trials facilitate access to new treatments and ultimately aim to better the prognosis. We give thanks to our patients, who generously partner with us, in order to give of their time, enthusiasm for research, and a mutual drive to improve the cure rates for cancer. For more information on BCG + MM, speak to your Doctor or specialist or visit www.anzup.org.au
Treating a largely remote patient population Dr Clare Gardner, Urology Fellow, Royal Darwin Hospital
The Royal Darwin Hospital is the tertiary referral centre for genitourinary (GU) oncology in the Northern Territory. Our multidisciplinary team serves a large catchment area and faces significant challenges to provide for the treatment needs of a predominantly remote population. Distance is a major hurdle in the Territory for both the patients and the clinicians. Remote patients may face days of travel in order to see a specialist for their initial consultation. Patients must temporarily relocate to Darwin for longer courses of treatment which removes invaluable family and community support. Additional interstate travel may be necessary if a diagnostic test, such as a PET scan, or other treatment, is not available locally. The burden of so much travel, on top of an already difficult emotional and physical cancer journey, can be overwhelming. These challenges necessitate effective communication and coordination between the various medical and surgical specialties within our multidisciplinary team. Early internal referral between specialists is the best way to ensure our remote patients receive the optimised cancer treatment they would be afforded in a major metropolitan centre. With distance a constant challenge, we have developed strategies to accommodate and mitigate its impact. Effective use of Telehealth can eliminate the need for travel to follow-up appointments when examination, an imaging study or a treatment is not required. This allows patients to remain in their home communities. In many cases, the patient’s family, general practitioner or clinic nurse, can join the Telehealth consultation, thereby strengthening the patient’s community-based care. When travel is necessary, each branch of the team works together to ensure all necessary investigations and treatments are performed in a single visit. Each week, all complex genitourinary cancers are discussed at a multidisciplinary meeting attended by urologists, medical oncologists, radiation oncologists and our urological cancer nurse coordinator. Input from all members ensures
treatment plans yield a valuable clinical interaction specific to any patient travelling to Darwin. The cancer nurse coordinator is the most important point of contact for our patients, accompanying them to all their specialist appointments. The coordination of appointments, imaging, travel, medications, surgeries and radiotherapy is an immense task, but just part of the critical role she plays in patient care. Patients will see multiple doctors and interact with many treatment teams during the course of their disease; our cancer nurse coordinator is a constant in their care plan. She answers questions and provides information to patients and their families about treatment as well as providing emotional support for patients, their partners and family members. A single contact person through their journey is especially important for patients who are displaced from families during treatment – it is a constant in a whirlwind of medical activity. Although communication and coordination within our treatment team is critical for timely patient care, we also need to be proactive in engagement with the Australian GU oncology community. Many of our patients have locally advanced or metastatic disease at first presentation and would benefit from inclusion in current clinical trials. Knowledge among all members of the multidisciplinary team of the target populations for the various trials in each type of genitourinary cancer is imperative to quickly identifying candidate patients for inclusion. Our engagement with research will lead to better outcomes for all patients facing genitourinary cancer. A cancer diagnosis can be an all-consuming for patients and their families. With such a large proportion of remote patients in our population, our team’s continuous focus is to ensure that distance is never a barrier to excellent clinical care, emotional support, patient education and access to clinical trials.
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All eyes on kidney cancer research Dr Craig Gedye, Medical Oncologist
ANZUP is actively working to find new treatments for kidney cancer. Kidney cancer is often cured if found early and successfully removed by surgery, but if the cancer has spread or comes back later then it is treatable but almost never curable. Unlike other cancers such as breast and bowel cancer, there are currently no additional treatments beyond surgery to prevent kidney cancer coming back after an operation. Treatments for kidney cancer that has spread include tablets that block the blood supply to the cancer, and new treatments that turn on the immune system in the hope that this will then attack the cancer. Tablets that block blood flow to cancer work in most patients for some time, but almost inevitably the cancer develops ways around this treatment and starts to grow again. These treatment work for the commonest type of kidney cancer (“clear cell”) but are not reimbursed for rarer kinds of kidney cancer in New Zealand or Australia. We are excited to be developing three clinical trials for kidney cancer, which address these three problems. Firstly we are working with the Medical Research Council of the UK to develop a very large international trial to test if new immune therapy drugs will prevent kidney cancer coming back in patients who have large or particularly nasty kidney cancers successfully removed by an operation from their urologist. This trial is called RAMPART and will take many years to answer this question. ANZUP is proud to have been involved in the planning of this trial since inception, and hope to have this trial available for patients in 2017. The second trial ANZUP is developing for kidney cancer is aimed at the second problem; what will help people whose kidney cancers have evaded the blood blocking tablets? We believe that an immune therapy will help these patients, and we’re trying to improve the treatment further by combining it with an established drug that is used to protect bones against cancer cells. There is early evidence that this bone protecting drug may improve the benefit of the new immune drug. This trial is called KeyPAD and will treat 70 patients, and again we hope to open this in 2017.
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Finally, a major problem for people with kidney cancer is when they have a rarer kind of cancer (so-called “non-clear cell”). While there is some evidence that the standard tablet treatments help these patients, there is no reimbursed treatment available in Australasia. We are excited therefore to be planning a trial that asks whether some of the new immune therapy drugs will help these rare kidney cancer patients. The trial is called UNISoN, and has a clever design; patients will first be able to take a single immune drug by itself, but if that should be unhelpful, we will then be able to offer this drug in combination with a second immune drug. This will tell us if the single drug alone is helpful in some people, and then also find out if some people need the combination of drugs to benefit. It will also offer hope of at least two treatment chances to patients who are currently facing the choice of paying privately for current tablet treatments. All of these trials are complemented by detailed scientific laboratory studies on patients’ cancer and blood samples to study how the treatments work, whom they work for, and whom might be better taking other treatments. We continue to work hard to develop other trials and studies to help Australasians with kidney cancer, and are very grateful for the support of patients participating in these trials and our commercial partners who provide funds and products to allow us to conduct these studies.
Kidney Health Australia, ‘My Kidney Cancer, My Health’ handbook Kidney Health Australia is proud to announce the publication of The ‘My Kidney Cancer, My Health’ handbook, designed for people diagnosed with advanced kidney cancer and their carers. ‘My Kidney Cancer, My Health’ focuses on helping patients understand advanced kidney cancer and its treatments. It also provides information about how they can take control – how to look after themselves physically and emotionally. The support chapter gives information on how other people in their lives can help, and vice versa. This handbook also lists many useful resources. The ‘My Kidney Cancer, My Health’ handbook is available as a free download from the Kidney Health website at http:// kidney.org.au/about-us/resources-library/ booksandpublication. Alternatively, contact our Kidney Health Information Service on 1800 454 363 or email KHIS@kidney.org.au to order your free printed copy of ‘My Kidney Cancer, My Health’. Patients can also ask any questions you may have about kidney cancer.
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Spotlight on NZ Dr Nick Buchan, ANZUP Board Member, Urological Surgeon and Clinical Director Urology, Christchurch
A couple of international phone call interviews later and I was asked to join them at the Annual Scientific Meeting (ASM) In Brisbane. I agreed without hesitation. I was nervous and excited from packing my bags to arriving at the hotel where the ASM was being held. After meeting other CAP members on the first day of the ASM I felt totally relaxed and welcome. I was finally with like-minded survivors and motivated, brilliant, caring people there to help or make a difference. The level of research, understanding and effort displayed at the ASM was mind-blowing.
ANZUP had a significant presence at the recent NZ Genito-Urinary Special Interest Group oncology meeting in Dunedin, New Zealand.
I have since taken part in a couple of CAP conference calls, and being able to put names to faces has made me feel like I am really contributing.
For the past two years both ANZUP chair Ivan Davis and CEO Marg McJannett have travelled to New Zealand for this meeting to encourage New Zealand representation in ANZUP and develop further links with the New Zealand clinical trials network.
I am proud to represent New Zealand as the voice of consumers over the ditch. With such a multi-cultural society here it is important their voices are heard, not only for themselves but also for the benefit of research and learning.
The annual meeting was held in conjunction with the New Zealand Urology Section meeting and welcomes a multi-disciplinary group including urologists, medical oncologists, radiation oncologists, clinical nurse specialists in urology and oncology, and industry representatives.
Hopefully, I will have a second Kiwi voice join me in the near future. In the meantime, I am continuing to learn with every email and teleconference. I hope my contribution will help all involved and I look forward to the 2017 ASM and seeing my fellow CAP family.
We also met with the Prostate Cancer Foundation of New Zealand to discuss possible future opportunities to work together.
Matt Leonard, CAP Member I joined the ANZUP Consumer Advisory Panel (CAP) on the recommendation of an oncology nurse at Auckland City Hospital after she interviewed me for a research study she was conducting. My name was put forward and I was contacted by the awesome ANZUP CEO Marg and CAP Chair Belinda.
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Air New Zealand has supported ANZUP as a Kind In Kind supporter since 2014, providing ANZUP members from New Zealand the opportunity to travel to Australia for key scientific meetings. Through these meetings members can discuss and explore new treatments to improve outcomes. This support has been invaluable in allowing us to bring members to Australia in a mentoring capacity and in exchanging expertise for the benefit of Australian and New Zealand patients.
About clinical trials
What is a clinical trial? In technical terms, a clinical trial evaluates the effect of some form of intervention on a group of people with a defined condition. That is, each study is designed to answer scientific questions and find new or better ways to help patients with testicular, kidney, bladder or prostate cancers. Many people when confronted with a clinical trial for the first time think they may be treated as a guinea pig. All the evidence shows, however, that people who participate in clinical trials are actually receiving the best level of care and - in general - have better outcomes than those who do not participate. Questions are continually asked: • Is this new drug going to cure cancer? • How will it work? • Will it shrink my cancer? • It is safe? • Does it make people live longer?
Questions you may like to ask if you participate in a clinical trial If you are thinking about taking part in a clinical trial, here are some important questions to ask: • What is the purpose of the study? • What does the study involve? What kinds of tests and treatments? (Find out what is done and how it is done). • What is likely to happy to me with or without this new research treatment? What could the cancer do and what could this treatment do? • What are my options and what are their advantages and disadvantages? • Are there standard treatments for my case and how does the study compare with them? • How could the study affect my daily life?
• Does it make them feel better? • And how does it stack up against the treatments already in use? ANZUP has a strong record of successful clinical trials. Many of the trials we do don’t involve big blockbuster drugs. ANZUP demonstrates its value and promise by performing investigator-initiated clinical trials, developed by our members both nationally and internationally across the range of genitourinary cancers. For up to date information on trial sites and numbers you can download the ClinTrial Refer ANZUP app.
Is there a clinical trial suitable for you?
• What side-effects could I expect from the study? (Please note: there can also be side-effects from standard treatments and from the disease itself). • How long will the study last? Will it require an extra time commitment on my part? • Will I have to be hospitalised? If so, how often and for how long? • Will I face any costs? Will any of the treatment be free? • What type of long term follow up care is part of the study?
A cancer diagnosis can turn a life upside down, particularly when the best treatment is not known. Clinical trials help us move research forward to develop the next step in treatment while giving patients the very best possible care. Talk to your doctor about which clinical trial might be best for you.
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About clinical trials
What is a concept development workshop? Anne Woollett, ANZUP Clinical Trials Project Manager The Concept Development Workshop (CDW) provides a forum for those with a research idea in its early stages to seek multidisciplinary input from ANZUP researchers on the scientific value, design, funding support and acceptability. Concepts approved for further development go on to form clinical trials. Some concepts require further refinement by the protocol working group with input from our Consumer Advisory Panel (CAP) before they can be approved for trial development. Each year, ANZUP holds four Concept Development Workshops for each of our tumour streams. With the money raised through fundraising and contributions from donors, ANZUP received 29 new concepts across all cancers in 2016 with eight concepts now in protocol development. A number of the remaining concepts are undergoing further refinement and will also go on to form clinical trials in the future.
2016 Concept Development workshops New Concepts
1) All members are invited to submit a brief concept to be considered for discussion at the CDW. The aim is to encourage members to consider new proposals and submit ideas. This can be helpful for concepts that require broad feedback or further refinement. Younger members (trainees for example) can also find this process rewarding. 2) Presentation of submitted concepts to a multidisciplinary group at the CDW including senior investigators, statisticians and researchers. The resulting discussion is often wide-ranging but aims to define clear “next steps”, which might include forming a working party to create a protocol or re-define the concept with the help of newly identified collaborators. 3) An opportunity for the assembled group to brainstorm – considering gaps in current knowledge and new opportunities for studies. The CDWs are not intended to replace existing opportunities to submit a concept to any of the sub-committees, or to replace the brainstorming sessions held at the Annual Scientific Meeting (ASM). We hope the CDWs offer an additional opportunity for concept development and encourage participation from the breadth of our membership while fostering multidisciplinary collaboration. This year, ANZUP has worked to streamline the concept review process to ensure a clear and transparent process:
There are three major components to ANZUP CDWs:
SAC Prostate WORKING GROUP
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• New Idea or concept • Complete Concept outline • Reviewed by MDM team worshop • Written feedback • S AC Endorsement based on Subcommittee recommendations • Working group for development, mentoring and support
We continue to encourage multidisciplinary submissions from anyone in our ANZUP membership with a new idea or concept that will improve the outcomes of urogenital cancers.
Optimal care pathway in prostate cancer Associate Professor Jeremy Millar, Radiation Oncologist Clinicians looking after men with prostate cancers will, if the Australian and the State and Territory Governments can achieve their aim, become increasingly aware of, and be influenced by, an “Optimum Care Pathway” (OCP) in prostate cancer. The background and content of the OCP is important to members of ANZUP in the way it will affect the care provided for men with prostate cancer, and the extent this can be used as a tool to improve care. You can obtain all of the history, background, and metadata about the prostate cancer (and 14 other) OCPs from an Australian Government webpage: http://www. health.gov.au/internet/main/publishing.nsf/content/occp The short version is that these OCPs aim to “improve patient outcomes by facilitating consistent, safe, high quality and evidence-based care across Australia”. They are expected to “describe the key steps in a patient’s cancer journey and expected standards of care at each stage. They aim to improve patient outcomes by promoting quality cancer care and ensuring that all people diagnosed with cancer receive the best care; regardless of where they live or receive cancer treatment … The pathways also ensure that those providing care understand how to coordinate the patient care between each stage”. The OCPs arose out of a 2010 Australian Government initiative to improve cancer care across Australia led by a National Cancer Expert Reference Group (NCERG) under the auspices of the Australian Health Ministers’ Advisory Council (AHMAC) and COAG Health Council. In turn, a steering committee working in the Victorian Department of Health was charged with overseeing the work, while the actual work was contracted out to the Cancer Council Victoria in consultation with a wide range of multidisciplinary experts, peak health organisations, consumers and carers. These OCPs have now been nationally endorsed by NCERG, Cancer Australia, Cancer Council Australia, COSA, AHMAC, and the COAG Health Council. A work program will push these out and promote them around Australia progressively in 2017 under plans determined by each State and Territory jurisdiction. For example, the prostate cancer OCP is not currently prioritised in Victoria but is being considered for emphasis in 2017.
This OCP provides an opportunity for researchers and clinicians to advocate for system resources and change to improve care for men with prostate cancer. The OCP makes recommendations regarding referral pathways, times, key interventions, and the settings in which these should occur. The OCP explicitly recognises the import of research: “participation in research and/or clinical trials should be encouraged where available and appropriate”. This OCP has the imprimatur of all levels of Australian government, as well as the endorsement of high level cancer control and advisory organisations. One critical implication of this is that the OCP establishes standards and benchmarks for jurisdictional prostate cancer health care systems endorsed by the very providers and funders of those systems. Gaps and deficiencies between what should be provided and what is actually provided in the parts of the care system provisioned by—and under the control of—these jurisdictions become more obviously the responsibility of the jurisdictions to fix. This will help clinicians and researchers who might also be struggling to cope with and within these “system gaps”. In order to advocate for the men we see with prostate cancer, these gaps need to be unambiguously identified and quantified wherever they exist. One example of how this might be done is in Victoria. Here, the Prostate Cancer Outcomes Registry (PCOR) is working with a Victorian integrated cancer service network working group to define indicators derived from the (often) qualitative recommendations in the OCP and line them up with data on the care and outcomes of Victorian men with prostate cancer accrued on to the PCOR. This then allows an ongoing “score-card” to measure and track any deficiencies and allow identification of geography or settings where standards are not being achieved. This powerful evidence can then be used by researchers and clinicians in discussion with funders and policy-makers to make cases for change and resource allocation to close these gaps for our patients.. Because the PCOR has now been opened – or will open – right across Australia, this is a mechanism that might be easily taken up as the OCP is promoted by governments across the nation.
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Optimal care pathway for men with prostate cancer Quick reference guide
Support: Assess supportive care needs at every step of the pathway and refer to appropriate health professionals or organisations.
Please note that not all patients will follow every step of this pathway:
Step 1 Prevention and early detection
Prevention: The causes of prostate cancer are not fully understood and there is currently no clear prevention strategy. Early detection Risk factors include: • increasing age • family history of prostate cancer • certain dietary factors
Step 2 Presentation, initial investigations and referral
Signs and symptoms • The majority of men presenting with prostate cancer have no symptoms. • Syptoms of locally advanced disease may include irritation on urination, obstructive urinary symptoms and/or blood in the urine.
Diagnosis, staging and treatment planning
Men in good health may consider tests for early detection after discussing the risks and benefits with their primary care provider. Assessments by the general practitioner should be completed within one week. Referral: The patient should be referred to a urologist within six to 12 weeks (without symptoms) and earlier if symptomatic.
Initial investigations include:
Communication – lead clinician1 to:
• PSA level • measurement of free-to-total PSA ratio.
• explain to the patient/carer who they are being referred to and why • support the patient/carer while waiting for specialist appointments.
The significance of rising PSA (i.e. free-to-total PSA ratio), even within the age-adjusted normal range, should be recognised, as well as a PSA that is at the high end of the normal range in younger men.
• race (men of Caucasian background are more at risk than Asian men). Case finding: Men at higher risk (based on their family history) should be counselled regarding their risk. PSA testing should be considered.
Implications of both a positive and negative biopsy result should be discussed with the patient before biopsy. A prostate biopsy should not be offered on the basis of serum PSA level alone. Diagnosis and staging: • DRE (prior to biopsy) • prostate biopsy • with or without prostate magnetic resonance imaging (MRI). The use of staging investigations in men with clinically localised disease should be based on their risk of metastatic spread (Gleason score, clinical stage, PSA), and provisional treatment intent. Tests may include: • DRE assessment • isotope bone scans • computed tomography (CT) scan and/or prostate MRI • Interval reimaging (to determine the appropriate timing of androgen deprivation therapy (ADT).
Treatment planning: All newly diagnosed patients should be discussed by a multidisciplinary team before beginning treatment. Research and clinical trials: Consider enrolment where available and appropriate.
Communication – lead clinician to: • discuss a timeframe for diagnosis and treatment with the patient/carer • explain the role of the multidisciplinary team in treatment planning and ongoing care • provide appropriate information or refer to support services as required. Offer advice on how to access support from prostate cancer peer support groups and groups for carers; visit www.prostate.org.au for local area listings.
1 Lead clinician – the clinician who is responsible for managing patient care. The lead clinician may change over time depending on the stage of the care pathway and where care is being provided.
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Step 4 Treatment:
Support: Assess supportive care needs at every step of the pathway and refer to appropriate health professionals or organisations.
Establish intent of treatment: • curative • anti-cancer therapy to improve quality of life and/ or longevity without expectation of cure • symptom palliation.
If curative treatment is considered, men should be offered an opportunity for a second opinion in order to have a balanced view about the available treatment options. Treatment of localised or locally advanced prostate cancer: • Watchful waiting: some patients (for example, those with other health issues who are not expected to live more than 7 years) should be monitored and symptoms treated if they arise. • Active surveillance: some men with low-risk prostate cancer should be regularly monitored for signs of disease progression so curative treatment can be initiated if necessary. • Surgery (radical prostatectomy): may benefit some men with at least a 10-year life expectancy.
• Radiation therapy by external beam radiotherapy (EBRT) or brachytherapy +/– ADT: may benefit patients with at least a 10-year life expectancy. Treatment of advanced prostate cancer: • ADT is the standard treatment. The timing of starting ADT is often related to balancing the risk of side effects against the unwanted effects of the disease. • For patients with metastatic disease, chemotherapy, second-generation anti-androgens, bisphosphonates and RANK ligand inhibitors may be of benefit.
Palliative care: Early referral to palliative care can improve quality of life and in some cases survival. Referral should be based on need, not prognosis. Communication – lead clinician to: • discuss treatment options with the patient/carer including the intent of treatment as well as the risks and benefits • discuss advance care planning with the patient/carer where appropriate • discuss the treatment plan with the patient’s general practitioner. http://wiki.cancer.org.au/australia/Guidelines:Prostate_cancer/Management/Locally_advanced_and_metastatic.
Step 5 Care after initial treatment and recovery
Cancer survivors should be provided with the following to guide care after initial treatment. Treatment summary (provided to the patient, carer and general practitioner) outlining: • • • •
diagnostic tests performed and results tumour characteristics type and date of treatment(s) interventions and treatment plans from other health professionals • supportive care services provided. Follow-up care plan (provide a copy to patient/ carer and general practitioner) outlining:
Step 6 Managing recurrent, residual and metastatic disease
Step 7 End-of-life care
• medical follow-up required (tests, ongoing surveillance) • care plans for managing the late effects of treatment • a process for rapid re-entry to medical services for suspected recurrence. Communication – lead clinician to: • explain the treatment summary and followup care plan to the patient/carer • inform the patient/carer about late effects, secondary prevention and healthy living • discuss the follow-up care plan with the patient’s general practitioner.
Detection: Most residual or recurrent disease will Palliative care: Early referral to palliative care can be detected by a rising PSA in asymptomatic men. improve quality of life and in some cases survival. Referral should be based on need, not prognosis. Treatment: Where possible, refer the patient to the original multidisciplinary team. Treatment will depend on the location and extent of disease, previous management and patient preferences.
Communication – lead clinician to: • explain the treatment intent, likely outcomes and side effects to the patient/carer.
Palliative care: Consider referral to palliative care if not already involved. Ensure that an advance care plan is in place. Communication – lead clinician to: • be open about the prognosis and discuss palliative care options with the patient • establish transition plans to ensure the patient’s needs and goals are addressed in the appropriate environment.
Visit www.cancerpathways.org.au for consumer friendly guides. Visit www.cancer.org.au/OCP for the full clinical version and instructions on how to import these guides into your GP software. To receive this publication in an accessible format phone 03 9096 2136 using the National Relay Service 13 36 77 if required, or email: firstname.lastname@example.org. Authorised and published by the Victorian Government, 1 Treasury Place, Melbourne. © State of Victoria, April 2016 (1405004) This work is available at: www.health.vic.gov.au/cancer
A LITTLE BELOW THE BELT 39
Prostate cancer â€“ what to expect This information sheet tells you what to expect during your treatment. Visit www.cancerpathways.org.au for more information
Prostate cancer support For information about prostate cancer or where to go for support call 1800 22 00 99 or visit Prostate Cancer Foundation of Australia www. prostate.org.au. Also, qualified cancer nurses at the Cancer Council can answer your questions about the effects of cancer, explain what will happen during treatment and link you to support groups and other community resources.
Call the Cancer Council on 13 11 20. If you need an interpreter, call TIS (the Translating and Interpreting Service) on 13 14 50. For support and advice for carers, call the Carers Association on 1800 242 636. Other resources include: â€˘ Continence Foundation of Australia www.continence.org.au
1. Initial investigations and referral If you have a family history of prostate cancer, your GP should discuss the option for annual PSA testing. If you do not have a family history of prostate cancer, you may still wish to consider tests for early detection after discussing the risks and benefits with your GP. Your general practitioner (GP) will assess your symptoms, conduct a physical examination and arrange blood tests if needed. Your GP should also discuss your needs (including physical, psychological, social and information needs) and recommend sources of reliable information and support. It can be helpful to bring a family member or friend with you to your appointments. If prostate cancer is suspected, you will be referred to a specialist (likely to be a urologist) for further testing. Your GP will provide the specialist with information about your medical history, whether there is a history of cancer in your family, and your test results.
Tests you may have: Prostate specific antigen (PSA) testing The PSA blood test looks for the presence in the blood of a protein that is produced specifically by prostate cells.
Measurement of PSA free to total ratio Most PSA in the blood is attached to proteins but some is free (unattached). Measuring the proportion of free PSA in the blood can assist in identifying the likely causes of an elevated PSA.
Digital Rectal Examination (DRE) The doctor inserts a gloved finger in the anus and examines the surface of the prostate, looking for irregularities.
2. Diagnosis and staging The specialist should discuss your test results and options for further testing. This is to find out whether cancer is present, and if it is, its stage of development and if it is confined to the prostate. Your specialist should also explain the risks and benefits of having a prostate biopsy and give you time to decide if you want to undergo further testing. It can be helpful to contact prostate cancer peer support groups, carer support groups, and special interest groups.
Further tests you may have: Biopsy Small samples are removed from your prostate gland to be examined under a microscope.
MRI scan Magnetic fields and radio waves are used to take pictures of inside the body.
CT of bone scan Computer technology and x-rays are used to create crosssection views of the body.
3. Treatment To ensure you receive the best care, your specialist will arrange for a team of health professionals to plan your treatment based on your preferences and needs. The team will be made up of health professionals who have experience managing and supporting a person with prostate cancer. Your specialist will tell you when the team will be discussing your case.Your team should discuss the different treatment options with you including the likely outcomes, expected timeframes, possible side effects, and the risks and benefits. Your doctor may also suggest you consider taking part in a clinical trial. Let your team know about any complementary therapies you are using or thinking about trying. Some therapies may not be appropriate, depending on your medical treatment.
40 A LITTLE BELOW THE BELT
You might want to ask for more time before deciding on your treatment, and you should be offered an opportunity for a second opinion by a radiation oncologist and a urologist in order to have a balanced view about the treatment options. There are a number of ways to treat prostate cancer. In some cases, more than one type of treatment could be used to get the best outcome. Treatment options for early prostate cancer: Active surveillance No treatment is given or treatment is postponed but the cancer is closely monitored.
3. Treatment cont’d Watchful waiting Less strict monitoring than active surveillance. Often suitable for older patients or patients who have other health issues. Surgery (prostatectomy) Surgery to remove the prostate may benefit those with early prostate cancer. It is important that this surgery is performed by a surgeon who is very experienced in performing prostatectomies and performs several operations every year. Radiation therapy (also called radiotherapy) can be given with or without surgery.
Radiation therapy may be external or internal (brachytherapy – where radiation is delivered using an implant placed into your body through or near the tumour).
Your doctor should discuss your needs with you during and after treatment (including physical, psychological, social and information needs) and may refer you to another service or health professional for different aspects of your care. Treatment options for advanced prostate cancer (i.e. affecting other organs or bone): Androgen deprivation therapy (ADT) ADT is an injection and/or tablet based hormone treatment. Your specialist will discuss possible side effects. Chemotherapy and other drug therapy May be given in conjunction with ADT. For more information about treatment and treatment side effects ask your doctor or visit www.cancer.org.au/about-cancer/treatment
4. After treatment After treatment is completed, your doctor should provide you with a treatment summary which details the care you received, including: • diagnostic tests performed and their results • types of treatment used and when they were performed • treatment plans from other health professionals • support services provided to you. To monitor your health, and make sure the cancer has not returned, you will need regular check-ups. You and your GP should receive a follow-up care plan that tells you about: • the type of follow-up that is best for you • care plans for managing any side effects of treatment, should they occur • how to get specialist medical help quickly if required.
Your doctor should: • discuss your needs with you and refer you to appropriate health professionals and/or community organisations, if support is required • provide information on the signs and symptoms to look out for that might mean a return of the cancer • provide information on prevention and healthy living. Treatment for prostate cancer sometimes damages nerves and muscles near the prostate and the bowel. This can lead to side effects such as incontinence, erectile dysfunction, infertility and loss of interest in sex. Fortunately, there are many ways to reduce or manage these, and most men are able to continue to lead active lives after their treatment.
5. If cancer returns Sometimes prostate cancer can come back after treatment. This is why it is important that you have regular check-ups. Usually this will be detected at your routine follow-up appointments or if you notice symptoms are coming back.
6. Living with cancer Side effects: Some people experience side effects (for example tiredness) that continue beyond the end of treatment. Side effects sometimes might not begin until months after treatment has finished.For more information about side effects ask your doctor or visit www.cancervic.org.au/about-cancer/survivors/long-term-side-effects Advance care plan: Your doctor may discuss with you the option of developing an advance care plan. An advance care plan is a formal way of setting out your wishes for future medical care. For more information about advance care planning ask your doctor or visit www.advancecareplanning.org.au/ Palliative care: This type of treatment could be used at different stages to help you with pain relief, to reduce symptoms or to help improve your quality of life. For more information about palliative care ask your doctor or visit www.palliativecare.org.au
7. Questions of cost There can be cost implications at each stage of the cancer care pathway, including costs of treatment, accommodation and travel. There can be substantial out-of-pocket costs if you are having treatment in a private health service, even if you have private health insurance. You can discuss these costs with your doctor and/or private health insurer for each type of treatment you may have. If you are experiencing financial difficulties due to your cancer treatment you can contact the social worker at your local hospital. For more information about cost of treatment ask your doctor or visit www.canceraustralia. gov.au/affected-cancer/living-cancer/dealing-practical-aspects-cancer/costs-treatment For more information about accommodation and travel costs ask your doctor or visit www.cancercouncil.com.au/get-support/practical-support-services/
A LITTLE BELOW THE BELT 41
Innovation and Education
Getting the message out Tonic Health Media saw the Below the Belt Pedalthon as a fantastic and unique opportunity to get the message out about a sensitive men’s health issue.
PROFESSOR IAN DAVIS ANZUP CHAIR
Tonic on Demand is Australia’s largest health and wellbeing network with a mission to support initiatives such as the Pedalthon. That support saw their production team shoot footage of the day, including key messages about the importance of clinical trials and research. The video footage will be used to across the Tonic on Demand broadcast network in GP waiting rooms nationwide.
SIMON CLARKE PEDALTHON FOUNDER
The partnership between ANZUP and Tonic Health Media creates an excellent opportunity given the GP waiting room provides the perfect setting to communicate these health messages in an approachable way.
ClinTrial app ANZUP released its first trial based App in July 2014. This application was designed for the specialists but will also be a very useful tool for patients and their carers. If you are looking for a trial for your particular cancer you can refer to either the ANZUP website or the new ClinTrial Refer. The ClinTrial Refer ANZUP app provides a current list of all ANZUP and ANZUP co-badged clinical research trials conducted in cancer centres in Australia and New Zealand. Designed for oncologists, general practitioners, research unit staff and patients, ClinTrial Refer ANZUP has searchable clinical research trial details, hospital locations and contacts, and inclusion and exclusion criteria. We hope this will help the community to identify trials that might be suitable. To download the free app, please visit: • Apple iTunes: https:// itunes.apple.com/au/ app/clintrial-refer-anzup/ id894317413?mt=8 • Google Play: https:// play.google.com/store/apps/details?id=com.lps.anzup Or go to the App/Android store and type in ANZUP
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Current ANZUP trials If you would like to know more about any of these trials please discuss it with your GP or specialist.
Bladder Cancer l BCG + MM Trial l BL12 Trial l PCR MIB
Testicular Cancer l P3BEP Trial
Prostate Cancer l ENZAMET Trial l ENZARAD Trial l Pain Free TRUS B Trial
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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 MMC (mitomycin C), 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. Earlier in the year there had been a worldwide shortage of the BCG but, fortunately, this has not affected the trial significantly and we are able to continue to get supplies to ensure the trial can continue. It is anticipated that 500 patients will be enrolled in the study in Australia and New Zealand. To date 90 patients have been recruited from 10 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 the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC). This ANZUP investigator initiated study is being funded by Cancer Australia. We acknowledge Omegapharm and Merck Sharp & Dohme for providing study drugs.
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Current site locations for the BCG + MM trial: NSW • Concord Repatriation General Hospital • Northern Cancer Institute • Sydney Adventist Hospital Clinical Trials Unit • The Tweed Hospital VIC • Austin Hospital • Footscray Hospital • Frankston Hospital • Royal Melbourne Hospital • The Alfred Hospital WA • Fiona Stanley Hospital
Current ANZUP trials
Bladder Cancer BL12 Trial
Urothelial cancer occurs in specialised cells seen in the urinary system: the kidney, the bladder and associated structures such as the ureters connecting the kidneys to the bladder. A new treatment called nab-paclitaxel is being studied for use in urothelial cancer. It will be compared with paclitaxel which is currently one of the chemotherapy drugs used as standard for this type of cancer. Research is needed to identify more effective treatment after urothelial cancers become refractory to prior chemotherapy agents. Nab-Paclitaxel is a formulation of the chemotherapy drug paclitaxel which is combined with a human protein albumin. Potentially, the different formulation creates a less toxic and more effective drug in the treatment of urothelial cancer. Nab-Paclitaxel is currently approved in Australia for use in metastatic breast, lung and pancreatic cancer.
We acknowledge Specialised Therapeutics Australia for providing study drug.
Neither drug has been approved in Australia for use in urothelial cancer. The aim of the study is to see if nab-paclitaxel can improve outcomes for patients with urothelial cancer that has progressed.
• Townsville Cancer Centre
Current locations for the BL12 trial: NSW • Albury Wodonga Health • Calvary Mater Newcastle • Concord Cancer Centre • Liverpool Hospital • Port Macquarie Base Hospital • Prince of Wales Hospital QLD
SA • Ashford Cancer Centre • Flinders Medical Centre
Search for more effective urothelial cancer drugs
TAS • Royal Hobart Hospital VIC
Approximately 100 participants from 27 Australian sites will take part.
• Ballarat Base Hospital • Border Medical Oncology
To date, 175 patients have been recruited across 38 sites globally. Australia and New Zealand currently hold 19 active sites with 30 patients recruited.
• Eastern Health (Box Hill)
Please speak with your doctor if this is of interest to you or someone you know.
• Peninsula Health Frankston Hospital
For more information please go to the trials page on the ANZUP website: http://anzup.org.au/content. aspx?page=trials-bladder
• Epworth Healthcare (Richmond and Freemasons) • Murray Private Hospital • Peninsula South Eastern Haematology and Oncology Group • St Vincent’s Hospital Melbourne • Sunshine Hospital • University Hospital Geelong
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC) and the CCTG (Canadian Cancer Trials Group).
WA • Fiona Stanley Hospital
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Current ANZUP trials
Bladder Cancer PCR MIB Trial Recently opened, this trial is aimed at managing bladder cancer that has spread into the wall of the bladder. A combination of chemotherapy and radiotherapy is the current standard treatment. This study aims to assess if it is safe and effective to add an additional new drug called pembrolizumab to the standard chemotherapy and radiation therapy. Pembrolizumab is a new treatment that “takes the brakes off” the immune system, allowing it to attack cancers more effectively. Studies of pembrolizumab in widespread bladder cancer have shown benefit, with cancer shrinkage observed in about two thirds of people and, in some cases, long periods of disease control. At present, pembrolizumab, is approved for use in Australia for the treatment of advanced melanoma in adults. It is expected that it will take two years to accrue the required 30 patients. To date, we have three sites active and recruiting.
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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 Current site locations for the PCR MIB ANZUP clinical trial: NSW • Prince of Wales Hospital VIC • Austin Hospital WA • Sir Charles Gairdner Hospital
Current ANZUP trials
Testicular Cancer Testicular Cancer/Germ Cell* Tumours PHASE III Accelerated BEP Trial The current standard practice for the treatment of germ cell tumours is the use of the chemotherapy combination called BEP, which consists of three chemotherapy agents – Bleomycin, Etoposide and Cisplatin – administered on a three-weekly cycle. BEP is given with a drug called pegylated G-CSF (or pegfilgrastim) that stimulates white blood cell production. 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 32 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.
• Macquarie Cancer Clinical Trials • Nepean Hospital • Prince of Wales Hospital • Royal North Shore Hospital • San Clinical Trials Unit • The Tweed Hospital • Westmead Hospital QLD • Princess Alexandra Hospital • Royal Brisbane & Women’s Hospital SA • Flinders Medical Centre • Royal Adelaide Hospital TAS • Royal Hobart Hospital
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-testicular
• Box Hill Hospital
ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC).
• Sunshine Hospital
This ANZUP investigator initiated study is being funded by Cancer Australia
• Austin Health • Monash Medical Centre - Moorabin • Peter MacCallum Cancer Centre
WA • Fiona Stanley Hospital New Zealand
Current site locations for the P3BEP ANZUP clinical trial:
• Auckland Hospital
• Dunedin Hospital
• Canberra Hospital NSW • Border Medical Oncology • Calvary Mater Newcastle
• Christchurch Hospital • Palmerston North 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.
• Chris O’Brien Lifehouse • Concord Repatriation General Hospital
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Current ANZUP trials
Prostate Cancer ENZAMET
The treatment of metastatic prostate cancer (prostate cancer that has spread beyond the prostate gland to other parts of the body), starts with medications that manipulate the hormone levels in the body. Hormonal manipulation occurs in the form of injections called LHRHA (luteinizing hormone releasing hormone analogues) which are often combined with tablets called anti-androgens. These medications often work very well for prostate cancer, but only for a limited time. Eventually, the metastatic prostate cancer develops resistance to hormonal manipulation (so called “castrate resistant prostate cancer”) and requires different hormonal therapy, or chemotherapy. This study is designed to assess a new anti-androgen tablet called Enzalutamide. Enzalutamide is much stronger than older anti-androgens and has been shown, in international trials, to improve outcomes for men with metastatic prostate cancer. These trials have demonstrated that when men develop castrate resistant prostate cancer, Enzalutamide can decrease PSA levels and shrink or stabilise cancer that has spread to other parts of the body such as bones or lymph nodes. Furthermore, quality of life was significantly improved.
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-prostate ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHMRC CTC). These ANZUP investigator initiated studies are being financially supported by Astellas, who are also providing Enzalutamide Current site locations for the ENZMET ANZUP Clinical Trial: NSW • Central West Cancer Services • Chris O’Brien Lifehouse • Concord Repatriation General Hospital • Nepean Hospital
The purpose of the ENZAMET trial is to establish if the use of Enzalutamide earlier in the course of treatment for metastatic prostate cancer may improve life expectancy and quality of life compared to older anti-androgens.
• North Coast Cancer Institute • Northern Cancer Institute • Port Macquarie Base Hospital - NCCI • Prince of Wales Hospital
ENZAMET is an international trial run by ANZUP in multiple centres in Australia, New Zealand, Ireland and the UK. The aim is to have 1100 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 943 patients have been recruited across 82 sites globally. Australia and New Zealand currently hold 42 active sites with 578 patients recruited. There are currently nine sites open in Ireland and 10 in the UK led by the collaborative group, Cancer Trials Ireland, a further 21 sites opened in Canada led by the collaborative group, CCTG (Canadian Cancer Trials Group), and one site in USA. We anticipate opening the study in Europe through the European Organisation for Research and Treatment of Cancer (EORTC) in early 2017.
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• Riverina Cancer Centre • St George Hospital • St Vincent’s Hospital Sydney • Sydney Adventist Hospital • Tamworth Hospital • Tweed Hospital • Wollongong Hospital NT • Royal Darwin Hospital
Current ANZUP trials
• Mater Misericordiae University Hospital
• Gold Coast Hospital
• Mater Private Hospital
• Nambour General Hospital
• St James Hospital
• Princess Alexandra Hospital Brisbane
• St Vincent’s University Hospital
• Royal Brisbane and Women’s Hospital
• University Hospital Waterford
• Townsville Hospital UK SA
• Aberdeen Royal Infirmary
• Ashford Cancer Centre
• BSUH (Royal Sussex Hospital)
• Flinders Medical Centre
• Guy’s and St. Thomas Hospital
• Royal Adelaide Hospital
• Great Western General Hospital • Kent & Canterbury Hospital
TAS • Royal Hobart Hospital VIC • Austin Hospital • Australian Urology Associates • Bendigo Health • Border Medical Oncology • Box Hill (Eastern Health) • Geelong Hospital
• Royal Cornwall Hospital • The Royal Marsden NHS Foundation Trust • University Hospital Southampton • University of London Hospital • Velindre Cancer Centre USA • Dana-Farber Cancer Institute Canada
• Goulburn Valley Health
• Algoma District Cancer Program Sault Area Hospital
• Monash Cancer Centre - Moorabbin
• Allan Blair Cancer Centre
• Peninsula South Eastern Haematology & Oncology Group (PSEHOG)
• BC Cancer Agency Fraser Valley
• Peter MacCallum Cancer Centre - East Melbourne
• Cambridge Memorial Hospital
• St Vincent’s Hospital Melbourne
• Cancer Centre of South-Eastern Ontario at Kingston General Hospital
• Cancer Care Manitoba
• Fiona Stanley Hospital • Sir Charles Gairdner Hospital New Zealand • Auckland Hospital • Christchurch Hospital • Waikato Hospital Ireland • Adelaide and Meath Hospital – National Children Hospital • Beacon Private Hospital Dublin • Beaumont Hospital • Galway University Hospital
• BC Cancer Agency Vancouver Cancer Centre
• CHUM - Hospital Notre-Dame • CHUQ - Pavillon l’Hotel-Dieu de Quebec • Cross Cancer Institute • Dr Everett Chalmers Hospital - Horizon Health Network • Juravinski Cancer Centre • Lakeridge Health Oshawa • London Regional Cancer Program • Ottawa Hospital Cancer Centre • Princess Margaret Cancer Centre • QEII Health Sciences Centre CDHA • Saint John Regional Hospital • Saskatoon Cancer Centre • Southern Alberta Institute of Urology • Thunder Bay Regional Health Science Centre
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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.
• Calvary Mater Newcastle
It is an international trial run by ANZUP in multiple centres in Australia, New Zealand, 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, 53 sites have been activated in Australian and New Zealand and 351 patients have been recruited. There are currently six sites open in Ireland, three in the UK, led by the collaborative group, Cancer Trials Ireland and two sites are open in the USA.
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
• 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 • Sydney Adventist Hospital • Tamworth Hospital • Westmead Hospital QLD • Genesis Cancer Care QLD - Tugun and Southport • Genesis Cancer Care QLD - Wesley and Chermside • Nambour General hospital • Oncology Research Australia, Toowoomba Hospital • Princess Alexandra Hospital Brisbane • Radiation Oncology /Centre – Gold Coast
We anticipate opening the study in Europe through the European Organisation for Research and Treatment of Cancer (EORTC) in early 2017. Please speak with your doctor if this is of interest to you or someone you know.
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• Radiation Oncology Services - Mater Adult Hospital • Royal Brisbane & Women’s hospital • Townsville Hospital
Current ANZUP trials
• Ashford Care Research (Adelaide Radiotherapy Centre)
• Auckland Hospital
• Flinders Medical Centre and RGH
• Christchurch Hospital
• Royal Hobart Hospital
• Beacon Private Hospital Dublin
• Cork University Hospital • Galway University Hospital
• Austin Hospital
• Mater Misericordiae University Hospital
• Box Hill (Eastern Health)
• Mater Private Hospital
• Epping Radiation Oncology Centre
• St. Luke’s Hospital
• Epworth Healthcare - Richmond • Frankston Radiation Oncology Centre
• Peter MacCallum Cancer Centre (East Melbourne)
• Beth Israel Deaconess Medical Center (BIDMC)
• Peter MacCallum Cancer Centre (Moorabbin Campus)
• Dana Farber Cancer Institute
• Ringwood Radiation Oncology Centre • Sunshine Hospital • Western Radiation Oncology Centre Footscray WA
UK • Kent & Canterbury Hospital • University Hospital Southampton • Western General Hospital
• Fiona Stanley Hospital
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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 periprostatic local anaesthesia to reduce the discomfort of transrectal ultrasound-guided prostate biopsy (“Pain Free TRUS B”, ANZUP 1501) A prostate biopsy involves taking small pieces of the prostate through a needle for examination under a microscope. A Transrectal Ultrasound (TRUS) guided biopsy involves inserting a thin needle through the wall of the rectum into the prostate using the guidance of an ultrasound probe. An injection of a local anaesthetic (lignocaine) around the prostate is the standard method of reducing the discomfort of a prostate biopsy. Methoxyflurane (Penthrox®) is a drug given with a simple inhaler and is widely used by First-Aid services to reduce pain. This randomised trial will determine if the discomfort of prostate biopsies can be reduced by giving men inhaled methoxyflurane in addition to their standard injections of local anaesthetic. This study will include 420 men. Currently we have six active sites across Australia and New Zealand with 30 patients recruited to the study. ANZUP collaborates with the University of Sydney through the National Health and Medical Research Council Clinical Trials Centre (NHRMC CTC). If you are interested in participating in the trial, please refer to http://anzup.org. au/content. aspx?page=trials-prostate This ANZUP investigator initiated study is being funded by Cancer Australia. We acknowledge MDI for providing study drug.
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Current locations for the Pain Free TRUS B trial: NSW • Australian Clinical Trials • Concord Repatriation General Hospital • Westmead Hospital VIC • The Alfred • Casey Hospital WA • Fiona Stanley Hospital
2016 fundraising champions Travis Cohalan – Fight one more round For the past 18 months, Travis, his wife, Laura, and their families have been raising funds for ANZUP. The fundraisers created wristbands in the blue and gold colours of the Mangoplah-Cookardinia United-Eastlakes Football Club (aka the Goannas), which Travis co-coaches. The wristbands sport the phrase Fight One More Round and 500 were sold. The Goannas also held a Yellow and Pink Charity Game this year and ran on to the field in jerseys designed especially for the game. About 100 of the jerseys were sold on the day and the proceeds, combined with money raised from raffles, was split evenly between ANZUP and the McGrath Foundation. They also continue to sell good old Cadbury chocolates, with all funds raised going to ANZUP.
TRAVIS AND THE GOANNAS
“I want to honour her memory by raising money to support cancer research.”
October 16, 2016 – Medibank Melbourne Marathon Festival
Kate went on to run a personal best time of three hours, 49 mins and raised more than $1200.
Brisbane-based Kate Feeley travelled to Victoria to run in the Melbourne Marathon and fundraise for the ANZUP cancer trials groups as a Bec’s Troops member.
Congratulations, Kate. We really appreciate your amazing effort with your run and fundraising. (continued over)
Bec’s Troops was formed by family and friends as a tribute to 19-year-old Bec Jago, who died from kidney cancer in 2011. Kate said she was hitting the road for the marathon as ANZUP was a charity close to her family’s heart. “It’s also close to Bec’s partner’s family’s heart after we lost Bec to kidney cancer,” she said.
PERSONAL BEST FOR KATE FEELEY
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November 20, 2016 – City2Sea In their fourth City2Sea campaign, Bec’s Troops had a stellar team of 45 runners and walkers who headed off on a beautiful Melbourne morning starting at the MCG and finishing at St Kilda beach. The team raised $12,000 to support ANZUP and its clinical trial research programs to improve outcomes for patients and their families diagnosed with a below the belt cancer.
BEC’S TROOPS CELEBRATING AFTER THE CITY2SEA
Thank you to t-shirt sponsors Lend Lease, RSM Australia and Big Hill Cranes for their support. In the past four years, Bec’s Troops has raised more than $45,000 thanks to the wonderful support of the family and friends who join the team each year in Bec’s memory.
Love Your Sister On her travels to New York, Karina Doig came across some amazing lycra fabric with a pink-ribbon design and decided to use it for a campaign as part of her small dancewear business Couture Costumes.
LOVE YOUR SISTER DANCE WEAR
She designed a range of dance wear, and money from sales of the range support ANZUP and the National Breast Cancer Foundation. Karina has raised $2600, with half donated to ANZUP, to improve health outcomes for those living with below the belt cancer and in support of clinical trials. Congratulations, Karina, on your generous effort and support, including the fabric and sewing time to make these fabulous leotards.
Community fundraising can contribute greatly to organisations such as ANZUP by supporting research activities and providing an opportunity to give back after treatment for cancer that has had an impact on individuals, families and support networks.
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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.
$50k - $250k
$10k - $500k
$1m - $5m
Be kind in-kind
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.
Would you like to help us? 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 5033. 100% of every donation made to ANZUP goes towards producing a clinical trial to improve the treatment of bladder, kidney, testicular and prostate cancers.
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Corporate Supporters As previously mentioned we are very fortunate to have our corporate supporters and partners that enable ANZUP to better support our members and ultimately patients and their families. Our corporate supporters include:
Kind in-Kind We acknowledge and thank the following organisations for the generosity they have shown us by providing their services pro-bono.
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The 2016 Below the Belt Pedalthon was a huge success The day was full of energy and brilliant competitive team spirit as 49 teams and nearly 300 riders cycled their hearts out on a perfect spring day on one of the most exciting tracks in Australia. Everyone was there to raise awareness of, and funds for, below the belt cancers, as well as the importance of clinical trials and the role they play in fighting cancer. We are thrilled to announce that over $300,000 has been raised. An extra big thank-you to each and every one of our riders, sponsors and donors for your amazing achievement. All the funds will be allocated to the Below the Belt Research Fund which aims to create a pipeline of new ideas to keep trial momentum moving forward.
The next steps to confirm investigator initiated studies are: 1.
S cientific Advisory Committee (SAC) to meet and discuss the funds raised.
O pen expressions of interest to the ANZUP membership.
R eceive applications.
G rant panel appointed by the SAC to assess applications and to consider scientific excellence, significance and/or innovations, feasibility, alignment with goals and objectives of ANZUP.
A ward the top applications.
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Like cycling? Don’t like cancer? Support me as I sacrifice my derrière to save your private parts. Thank you. HUGH, ORIGIN ENERGY. STACKED VERSION
100% 100% OF MONEY RAISED IS COMMITTED TO THE BELOW THE BELT RESEARCH FUND
Cancer affects everyone in some way. It is feared by all. I never met my grandfather due to testicular cancer. My mum has battled with breast cancer. Never knowing if or when it will re-occur. If ANZUP’s trials and research can find faster, more effective treatments and save lives ... then why would we not support them? I thank you for any donation, no matter how big or small. KURTIS, CLAYTON UTZ
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Update on Below the Belt Research Fund projects It can be challenging to obtain the initial funding to move a concept through to being a viable clinical trial. That’s why the ANZUP Below the Belt Research Fund has been established: to move new ideas into the next evolutionary step and to help improve the prospect of full funding support and completion. In 2016, $150k raised in the Below the Belt Pedalthon was put aside to fund these projects. Applications where accepted and finally 3 successful projects were selected to be the recipients for the year.
Dr Allan “Ben” Smith e-TC 2.0: Further development of an online psychological intervention for testicular cancer survivors The e-TC 2.0 project, supported by the ANZUP Below the Belt Research Fund, is evaluating the feasibility of a revised online psychological intervention for men who have completed treatment for testicular cancer (TC) and are experiencing psychological distress, including fear of recurrence. The e-TC 2.0 team is aiming to recruit 40 TC survivors to use the website and complete measures of acceptability, psychological distress and quality of life. Eligible participants will need to have completed treatment, show no signs of recurrence, and report borderline/clinical anxiety, depression and/or fear of recurrence. The team has applied for ethics approval and is going through the process of obtaining governance approval for the study. 7 sites have agreed to assist with recruitment: • Lifehouse • Concord • Westmead (Private Rooms) • Royal North Shore Hospital • Northern Cancer Institute • Peter Mac • Monash Health Website updates are well underway, making it more tailored, interactive and user-friendly for testicular cancer survivors. The website will be launched along with recruitment to the pilot study in early 2017.
Dr Carmel Pezaro, Medical Oncologist Defining primary resistance to chemohormonal treatment with docetaxel in men with metastatic hormone-sensitive prostate cancer: a preliminary biomarker cohort study The project aimed to study why some men with advanced prostate cancer respond less well to the standard initial hormonal and chemotherapy treatments. The support of the Below the Belt Research Fund has enabled a collaborating team to undertake this work. In the first 12 months of this project, circulating tumour cell assays have been collected and analysed from men commencing chemohormonal therapy. Whole blood and plasma have been collected and stored, for batch-analysis of whole blood RNA and lipidomic/cytokine levels during the second year of the project. Additional patients will also be recruited during the next year, in order to complete the project. Dr Pezaro is looking forward to presenting the results of this research and ultimately to learn how we might identify patients who should receive more intensive treatments.
Associate Professor Andrew Weickhardt, Medical Oncologist Circulating immune cell changes in patients treated with pembrolizumab and chemo-radiation for bladder cancer The Below the Belt Research Fund is being used to compare the changes in the immune system in patients on a world-first ANZUP trial of chemotherapy and radiation with immune therapy (pembrolizumab) in bladder cancer with a similar group of patients having chemotherapy and radiation alone as standard care. We are in the process of collecting and storing blood from patients who are having treatment, and in 2017 will begin the process of comparing changes in immune-relevant genes and cytokines between the two groups of patients to assess the impact of immunotherapy.
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Overview of the day Thank you to the 49 teams who competed in the 2016 Below the Belt Pedalthon. Thank you also to our wonderful sponsors, Gresham, Pfizer and Astellas.
WITH THANKS TO OUR SPONSORS GOLD SPONSOR
CHARGE BAR SPONSOR
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WITH THANKS TO OUR TEAMS
THANKS ALSO TO OUR VERY GENEROUS SUPPORTERS
COMMUNITY TEAMS Chicken Legs McGee
Cyclepaths Has Beans 2016 EVENT SUPPORTERS
Has Beans No Longer Skid Marks Speed Dealers The BMX Bandits 2 The Champion Family
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Three years on Simon Clarke, Pedalthon Founder
In a society surrounded by an increasing list of charitable endeavours and only finite time and resources, it can often be difficult to make a choice of where to best direct our philanthropic efforts. We often ask ourselves questions such as: what makes this event any more worthy than others? How is this cause any different? Will my personal contribution truly make a difference to this organisation?
In addition to our Pedalthon’s other achievements, what I continue to be inspired by and increasingly proud of, is Pedathon’s ability to strike a chord with our audience and for them to act on this message. I have been touched by countless stories of individuals being empowered and acknowledging that #itsnotawkward to speak to their doctor and to get a check-up.
The question I ask myself is what does it actually mean for a charity to be a success? For some, one of the most observable and easily comparable forms of success is the total funds raised. For others, it’s the tangible achievements that come as a direct result of these efforts. However, the one definition of success that I wanted to touch on - and truly think is undervalued - is the effectiveness and the ability of that charitable effort to drive social change. This impact of driving a response at the individual level can be quite profound and, in itself, can truly “make a difference”.
As such, I think it is only fitting that I take this opportunity to acknowledge each of you who has believed in us and supported us in our efforts to date. To all of our sponsors, donors, participants, volunteers, team members - everyone involved with Pedalthon to date - I wanted to say thank you. You are the reason for our collective success. We continue to be inspired by your generosity and your commitment and it propels us to aspire to do the most good that we can do. I can say from my experience so far, the biggest impact often comes from the smallest act. No matter your contribution, you have made a difference to someone.
I have always been told that a problem shared is a problem half solved and yet, so often in our collective dealings with cancer, we hear the phrase “if we had only known earlier we could have tried something different”. These charitable efforts are our chance to do that. Our chance to drive awareness and to change the way that we, as a society, react, communicate and respond to these below the belt cancers.
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So, to go back to how we make the decision to support a charitable cause, I’ve realised that a huge part of what we do and why we do it, comes down to people. Our relationships with them; whether we believe in them; and their desire and ability to drive a positive, successful outcome.
Keep riding, spread the message and thank you for being a part of Pedalthon.
Fundraising heroes Clayton Utz blew fundraising off the track. Congratulations to their Girls’ team Sonia, Caitlin, Cilla, Rachel, Madeleine and Gabrielle who raised $11,206. An extra special congratulation goes to Sonia Goumenis from the Girls’ team who raised an amazing $5800 – an outstanding individual effort. Fantastic work Clayton Utz Girls and thank you for being the highest fundraiser for three years in a row.
Top fundraisers Individuals
1. Sonia Goumenis
1. Clayton Utz - Girls
2. Mark Crean
2. Jones Day
3. Michael Lion
3. Team GT
4. Martin Barry
4. QBE 2
5. Tom Stack
5. The Origin Solar Power Racers
THANK YOU TO EVERY RIDER FOR YOUR FUNDRAISING EFFORTS.
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Champions of the track Congratulations to Norton Rose Fulbright Racers who are the 2016 Below the Belt Champions. The team did 179 laps in three hours.
A special mention also goes to Ronald Visser from Origin Energy who did 8:33 minutes at 39.3 km/h in the sprint challenge. Congratulations on your win and speed.
Congratulations to the other winners of the day • Fastest Lap – Male: Justin Eley • Fastest Lap – Female: Sophie Chestertown • Individual Best Dressed: Kristina Kapsa • Best Dressed Team: Speed Dealers • Student Team: Cyclepaths • Community Team: Lion Riders A • Diversified Team: Sydney Market Foundation • Financial Services Team: QBE 2 • Industrial Team: Origin Peak Power Racers • Legal Services Team: Norton Rose Fulbright Racers • Medical & Pharma Team: Pfizer Pedal Pushers • King of the Mountain: Ronald Visser • Queen of the Mountain: Sophie Chestertown
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Norton Rose Fulbright have entered teams every year since Simon came up with this great idea to raise money for such a worthy cause. Cycling has superseded golf as the No 1 networking sport globally as MAMILS (Middle Aged Men In Lycra) have embraced cycling with a vengeance! Simon’s timing could not have been better in dreaming up the Pedalthon – riding the wave of cycling popularity to raise substantial funds for ANZUP. After coming 2nd overall in 2014 and taking out the Law Firm title 2 years in a row, we decided to go all out for the overall team win in 2016, and entered 2 teams this year and some of the younger lawyers in the team trained hard and organised training sessions. Our ‘Racers” team is made up of a couple of middle aged partners of the firm who race regularly at club level and who do endurance sportives (100 km+ rides/races) so have plenty of kms in the legs, a younger partner
who is as obsessed as the other two but 10 years younger (Tim finished overall best rider on the day) and a couple of gun young triathletes, one of who transferred from our London office earlier in the year. Our second “Cruisers team” was made up of strong but less obsessive riders and a couple of clients as guest riders. The clients turned out to be strong riders and the Cruisers finished 2nd overall to the Racers and kept the Racers on their toes. Great event we are proud to be a part of – the younger members of the team are already planning the defence of our title in 2017.
RICHARD LEWIS Richard leads the Corporate Law practice at Norton Rose Fulbright in Australia – he is a former runner and golfer who has become an obsessive rider and MAMIL!
Save The Date! For next year’s BTB Pedalthon 19 September 2017 • belowthebelt.org.au
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Kaarle McCulloch Below the Belt Pedalthon Ambassador When I was first asked to be an ambassador for the BTB Pedalthon I was not sure that it was the right charity for me to be involved with because it was focusing on men’s cancers. In retrospect, I know that this was a silly thought to have, because even though I am a woman, the men in my life are as equally important to me as the women. So I thought to myself what a wonderful opportunity for me, as a woman, to support a men’s cancer charity. Not only that, it involves something I love very much, which is cycling. One of the key things that stuck with me in this year’s BTB Pedalthon was Simon’s vision of making below the belt cancers (kidney, prostate, bladder and testicular) a topic people could feel comfortable talking about; to help reduce the stigma with the #itsnotawkward social media campaign. Being able to be open and talk about all kinds of things allows barriers to be broken down and create a clearer and better understanding of things that, at first, might seem difficult to talk about. Many of the men in my life tend to be very big “manly” personalities with stereotypical attitudes. For them, going for check-ups at the doctor is not “manly” or even part of the men’s cycling psyche, believing that sport psychology is for females only – attitudes that often leave me quite exasperated and frustrated. As a result I realised part of the reason for supporting the BTB was because I wanted to show my male friends that, yes, I am supporting a charity that deals with issues that can be scary to talk about. Aside from reducing the stigma, the BTB Pedalthon is also about raising money for ANZUP and clinical trials.
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The actual Pedalthon has been one of the most rewarding charity events that I have had the honour to be involved with. For me it was some small things on the day, such as seeing ANZUP chair Ian Davis on the ground supporting the event. When you see that the event means something to everyone from Ian right down to a woman I met on the day who had just started working there only a week before, it really makes you feel like you are a part of something that will make a difference. I was really happy to hear a few months after the 2015 Pedalthon that the funds raised had already been used for several clinical trials that normally take months to fund. As an ambassador, I aim to inspire the riders of the BTB Pedalthon to raise more money for the event and also make their day a little more enjoyable, with some tips and maybe help inspire them to see cycling as a form of exercise that is fun. What the riders don’t realise is that seeing them ride helps me remember what it felt like when I first found cycling and the pure joy it gave me. Training at the highest level can be demanding at times and the memory of seeing a woman on a teal green Amsterdam bike with a basket that has a baguette in it, it still makes me grin like a Cheshire cat. Also the team with Hawaiian shirts and music blaring from their bottle cages. The serious teams left me breathless with their massive feats of endurance for three hours. I got the great honour at the end of the day to present medals for those more serious ones that do training to be able to say that they had the fastest lap - Justin Eley and Sophie Chestertown - and to the highest fundraiser (Sonia Goumenis), and of course the best dressed (Katrina Kapsa). I have been to Olympic Games, Commonwealth Games, won Olympic medals and held world recordsAchieving those things was not only personally satisfying but has also given me a platform to be able to be a part of something as wonderful as the BTB Pedalthon. The atmosphere and genuine good feeling that floods Eastern Creek Raceway for the gruelling four-hour challenge is something that blows me away.
Tales from the track Sonia Goumenis and Cilla Robinson, Clayton Utz There’s a lot of pride, and even a bit of swagger, among the Clayton Utz teams that participated in the 2016 Below the Belt Pedalthon.
But it’s off the track and on the fundraising field where Clayton Utz shines the brightest. The firm has a strong social responsibility program addressing disadvantage and facilitating access to justice. Their Clayton Utz Foundation has distributed more than $8.8 million to charities with a connection to the firm since 2003, and their Community Connect program offers employees direct involvement with charities across Australia through volunteering and fundraising initiatives.
Although not the fastest on the track, the Clayton Utz teams definitely know how to bring it when it comes to fundraising, securing the Fundraising Champions title for three years running.
With all the amazing causes being supported by corporate Australia, Sonia acknowledges that it’s not easy competing for fundraising dollars. “That’s why we always give our supporters something different for their fundraising dollars with the Pedalthon.”
Clayton Utz’s banking partner Sonia Goumenis and workplace relations special counsel and soon-to-be-partner Cilla Robinson are two of the cyclists from this year’s women’s team.
The first year, the team members promised their supporters they would fit their bikes with Spokey Dokeys in a crazy attempt to distract the other riders. Last year, they pitted the men’s team - the ‘MAMILs’ - against the women’s team.
Sonia has been a part of the Below the Belt Pedalthon since the beginning. For her, the decision to get involved stemmed from her love of cycling.
This year, Sonia committed to wearing a unicorn onesie if her supporters helped her reach her $5000 fundraising goal.
“It had been years since I had been on the road on my bike. The Pedalthon was the perfect opportunity to get back out there while supporting Simon and raising awareness and funds for the life-threatening but less spoken about and ‘unsexy’ cancers.” For Cilla, the Below the Belt Pedalthon’s cause was personal. “My grandfather died suddenly from prostate cancer when I was 11 and I know many more people whose lives have been tragically impacted by loss caused by preventable cancers. For this reason, the work that ANZUP does is a cause close to my heart.” Between family and work commitments, finding time to train was the real challenge for both women who are top lawyers in their respective fields. However, the few training sessions they did manage to squeeze in with their teams paid dividends in building camaraderie between team members and out on the track. “We were all incredibly supportive of each other,” said Cilla. “Together with the DJ at the top of the killer hill on the track, it really helped pump up the spirits and our efforts.” “Last year, I even hung onto the back of the peloton for a couple of laps,” said Sonia. “It was the best I’ve ever performed on the cycling track.”
”My colleagues, clients, friends and contacts were extremely generous, making donations themselves and inspiring their networks to do the same. With their support, a matching donation from the Clayton Utz Foundation across the Clayton Utz teams, and a decadent bake sale, I raised almost $6,000,” she said. Together, the Clayton Utz women’s team raised more than $11,200 for ANZUP this year. So, what of the unicorn onesie? “It made an appearance, but not for long. It was great warm up gear but it had to go after a couple of laps,” Sonia said. Will Clayton Utz be back in 2017 to defend its title? “You can count on it,” said Cilla. “We’ll be back next year to defend our Fundraising Champions title, and we’ll be wrangling even more of our work mates and colleagues to join in the fun. “The spotlight on Aussie men’s health and below the belt cancers needs to shine brighter.”
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Tales from the track Gresham, Gold Sponsors As Gold Sponsor of the Below the Belt Pedalthon for three years running, we came into the 2016 event with a little experience and a lot of enthusiasm. Supporting our friend and colleague Simon Clarke and ANZUP has become one of our favourite days in the calendar and this year did not disappoint. With a mixed team of riders ranging from a head peloton racer, to a fixed gear roadster, to a French inspired basket bike complete with baguette and a bottle of cabernet, we were ready to hit the circuit again and push our untrained legs to the limit.
A perfect sunny spring day saw Eastern Creek buzzing with anticipation and, as the music pumped around the track, we set off to achieve as many laps as possible in four hours. This year there was more fancy dress, a roadside DJ, and even mini time trials throughout the race to keep us all entertained and motivated. Being overtaken by a speeding peloton one minute and riding next to a guy in a fluro tuxedo jacket the next is what makes this an amazing day out â€“ and all for a good cause. After a hard day on the track, and a well-earned lunch with the entire group, we heard some touching speeches from all of those involved in ANZUP and the Pedalthon and how our fundraising efforts are helping to raise awareness and assist with these important cancer trials over the coming years. It was a truly inspirational and feel-good day and one that we are proud to be a part of. See you next year!
Tales from the track Pfizer Oncology For three hours, Linda Corrigan, Mark Coleman, Cameron Dodds, Andrew Thirlwell, Steve Nielsen and Simon Higgins from Pfizer Oncology donned their best lycra and lapped it around Eastern Creek Raceway to raise money for ANZUP in the Below the Belt Pedalthon. It was a hot day out on the track but with the Pfizer Oncology support team keeping the riders hydrated at the water stops, as well as cheering and dancing them along, the team came up trumps. For the third year in a row the Pfizer Pedal Pushers took home first place in the Medical and Pharma Team category. There are more than 45 teams across a range of industries that competed in the Below the Belt Pedalthon to raise awareness of the highly prevalent but less glamorous below the belt urogenital cancers, such as prostate, bladder, kidney and testicular cancers.
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Pfizer Oncology has had a close working relationship with ANZUP for many years and 2016 marks the third consecutive year Pfizer Oncology has sponsored the Pedalthon. This year over $1413.50 was raised from donations as well as the sausage sizzle held on site at the Pfizer head office. Congratulations again to the Pedal Pushers. We hear they are already in training for 2017.
Tales from the track Ronald Visser, Origin Energy Origin Energy has been supporting Pedalthon since its inaugural event in 2014. When I was first approached to organise Origin teams for the event I was keen to help out. We got the internal sign offs and have been sending three teams to participate in the Pedalthon for the past three years. Pedalthon increases the awareness about urogenital cancers and participants in the event have made significant contributions to ANZUP in the past three years. I am a passionate cyclist and have been riding my bike for most of my life. When you grow up in The Netherlands your parents put you on a bike at the age of two so you don’t really have a choice I guess. When I moved to Australia six years ago I joined a cycling club in Sydney, mainly to meet new people but also to feel safer on the road. Australia still has a long way to go when it comes to safe cycling infrastructure, but hopefully the increasing popularity of cycling will drive politicians to take the right decisions. The great thing about Pedalthon is that it’s very safe and everybody can participate. You don’t need to ride 300+ km per week or be involved in racing. The Origin teams have people that ride their bikes a couple of times a year and also people that compete regularly in races or Grand Fondos. Sadly we didn’t have any women participate this year, but we will aim to have a women’s team next year. It was about 23C and mostly sunny so we were really lucky again with the weather this year. Most of the Origin people got to Eastern Creek early so they could enjoy a complimentary coffee before getting to the start line.
The first couple of laps usually start at a leisurely pace, but as the event goes on, the front group thins out a bit. This year’s event featured the King of the Mountain (KOM) prize for the fastest person to get over the main hill on the circuit. I had a go at it a few times during the three hour ride and was lucky enough to register the fastest time up the hill. Origin always brings out a support crew to cheer on the riders, hand out water bottles, take photos and generally support the riders. Most Origin team members take a break for a couple of laps during the three hours to grab a coffee or have a massage before completing the three hour ride. I used to do a bit of racing around Australia so personally love the two lap sprint race. This year’s race was very exciting as it was on from the start. Lots of people attacked the bunch, which was great. One guy attacked at the start of the final lap and built up a lead increasing to 10 seconds with 800m to go. That’s when people started to get really nervous so a few guys (including my Origin team mate Wayne) tried to bridge across. There was a big headwind at the final straight so I managed to jump on a couple of wheels until the final 500m. The gap had halved so I thought if I wanted to win the race I had to go then. I dug deep and managed to bridge across to the leader and pass him in the final 50m. Pedalthon was extremely well run again this year so I would like to thank the organisers, Origin, ANZUP and all the sponsors for their hard work and making everything go smoothly. It’s all about raising awareness, contributing funds to ANZUP and having a great day out with your colleagues from different teams. We can’t wait to be back next year.
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Tales from the track Jonny Harrison, Lion Lion has supported the Pedalthon for the past couple of years and is proud to support an amazing event that raises money for a great cause. It is great to see the money raised going straight into research, and both the riders from our team and the broader Lion business are always keen to support such a worthwhile cause.
which not only provides the opportunity to meet likeminded individuals from other businesses, but also provides the competitive challenge for those of us so inclined.
The event itself is extremely well run, lots of fun and a great event for the team to get to know each other outside the workplace. There is a strong field from various industries,
Lion will be proud to continue its support of the event and is looking forward to fielding another strong team in 2017. Keep up the great work.
It’s a great course, which is both relatively flat and fast with plenty of room for a range of abilities. The race organisation is superb and caters for new to experienced racers, with pace cars, nutrition, support mechanics and a great atmosphere. The meal afterwards is a great opportunity to relive the day with colleagues and network with people from other businesses, all with some good food and a beer or two.
Tales from the track Dave Cannan, ANZUP Team For the third running (or should I say cycling) of the ANZUP Below the Belt Pedalthon, I had the privileged opportunity to be team coordinator for Team ANZUP.
three hours while other riders (think wicker baskets and handlebar tassles) ride around the same track and everyone has a great time.
We were a nifty and vibrant collection of novice and amateur cyclists, ready to push our bodies and rusty bikes around Eastern Creek Racetrack to raise crucial funds and awareness for urogenital and prostate cancer trials.
You couldn’t have picked a better day for the event in terms of the weather and just when the lactic acid starts to creep into the thighs and calves, the ANZUP support team set up shop at the top of the hill to provide riders with water, wicked beats and much needed encouragement.
Riding for team ANZUP, I had the pleasure to ride with first time BTB Pedalthon riders Annie Yeung, Anna Walsh and Beau Salwin. Showing the novices the ropes were Karen Bracken, Howard Chan and ANZUP oncologist Professor Peter Grimison. I took part in the inaugural BTB Pedalthon in 2014 but missed the 2015 event as my daughter decided that she would make her arrival into the world around that time. Having previously participated in a BTB Pedalthon, I knew that Simon Clarke and the team at ANZUP would put on a great show that appealed to riders of all shapes, sizes and abilities. There’s something to be said for a riding event where serious riders can join the peloton and ride non-stop for
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Funds raised from the 2016 BTB pedalthon are just over $300,000 – an incredible testament to Simon, the team at ANZUP and of course everyone who rode and/or donated. Rain, hail or shine, I’ll see you at Eastern Creek in September 2017 for the fourth annual Below the Belt Pedalthon.
Tales from (outside) the track Tim Griffin, Seyfarth Shaw On Friday, November 11, cycling teams from the employment and safety law firm Seyfarth Shaw battled it out with a state vs state in-house Pedalthon. The Melbourne Mountaineers and the Sydney Sprinters cycled a combined 190km from their city offices over the course of the three-hour challenge. Exercise bikes were placed in each office and teams of 12 cycled for 15 minutes each on a continuous ride. Melbourne Associate Will Marshall said it was “an exhilarating race against the clock for a great cause - a team bonding and thoroughly enjoyable experience.”
ASSOCIATES SHOMAICE ZOWGHI AND GEORGIA SIMMONDS, MELBOURNE
Sydney Associate Shomaice Zowghi said the pedalthon brought the whole office closer together in the spirit of philanthropy and “made us finish the week on a cardio high.” Both teams enjoyed a post-race lunch to discuss tactics for next year’s big race and proudly raised $3000 for the Below the Belt Research Fund. THE SYDNEY TEAM
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A little below the belt is a biannual community magazine, featuring regular updates and stories from health professionals, researchers, canc...
Published on Dec 20, 2016
A little below the belt is a biannual community magazine, featuring regular updates and stories from health professionals, researchers, canc...