Prostate News ISSUE 53 / July 2013 by Prostate Cancer Foundation of Australia

PROSTATENEWS reducing the impact of prostate cancer

ISSUE 53/JULY 2013

THE MALE BAG RIDE

DRIVING AWARENESS OF PROSTATE CANCER

NATIONAL BOARD Chairman David Sandoe OAM Deputy Chairman Jim Hughes AM Finance & Operations Chris Hall (Chairman) Research Advisory Professor John Mills (Chairman) Awareness & Education Dr David Malouf (Chairman) National Support Groups David Sandoe OAM (Acting Chairman) Marketing & Fundraising Steve Callister (Chairman) Rotary John Palmer State Chairmen Tony Sonneveld OAM (NSW/ACT) Peter Gebert (VIC/ TAS) Roz Baker (WA) Professor Judith Clements (QLD) Emeritus Professor Villis Marshall AC (SA/NT) Cover shot: The Male Bag Riders starting out on their journey from Perth to Melbourne.

CEO Message P

rostate cancer research in Australia is set to reach new heights with PCFA’s new research program strategy which was launched on July 7th at our Annual Research Update in Melbourne. Thanks to the generosity of The Movember Foundation, over the past five years PCFA has invested over $30 million into prostate cancer research projects right across the country. These projects cover the full spectrum from basic science through to survivorship issues such psychological interventions and exercise programs. The key aim of our new strategy is to build on the successes of the past and harness the strengths of new researchers. In developing our new five year plan, we have into account the feedback and views of scientists, support group members and Ambassador speakers, men’s health organisations and other interested parties. The new plan will deliver a clear map of future priorities and focuses on the following keys areas: • Growing and strengthening the funding base for PCFA’s established research program

• Increasing the national and international collaboration between prostate cancer research teams • Diversifying our research program by supporting innovative projects and accelerating current research into clinical trials • Supporting and promoting sustainability for the Australian prostate cancer research workforce. As part of this new strategy, I am delighted to announce two multimillion dollar Movember Revolutionary Team Awards in partnership with The Movember Foundation. These awards of $5.25 million each over three years will fund two collaborative research teams that have the scientific and clinical expertise to have a nearterm, revolutionary and transformative impact on the clinical management of prostate cancer. The first team will focus on advanced prostate cancer and the second on localised disease. This significant initiative is part of Movember’s global research strategy to build powerful, collaborative teams that accelerate improved clinical tests and treatments for prostate cancer. The two awards will be made in December 2013

Dr Anthony Lowe, Chief Executive Officer, PCFA.

Contents Around the Country ................................................................................................ Page 03 Research .......................................................................................................................... Page 04 Awareness ...................................................................................................................... Page 06 Support ................................................................................................. Page 08 Health Programs & Nursing ................................................................................ Page 10 Fundraising ..................................................................................................................... Page 12 Opinion ............................................................................................................................ Page 14 Partnerships .................................................................................................................. Page 16

PCFA National Chairman, David Sandoe OAM pr Dr Carole Pinno esenting ck AM with her PCFA Award re cently

Around the country Whisky Live Perth 2013 Heavy hitters on North Stradbroke Every year for the last seven years the Norm Ross Memorial Annual Cricket Carnival has been the big event on North Stradbroke Island.

Whisky Live in Perth this year was a grand occasion, held at Winthrop Hall, University of WA, on Saturday 27th April. The evening session was a sell out with many young whisky lovers attending. A Whisky raffle was once again held at each of the sessions, raising over $8,000 in total for PCFA. PCFA team members, Bill Munro, Cate Harman and Belinda Katz

When Norm Ross, a much-loved figure on North Straddie passed away from prostate cancer, his friends and family created the cricket carnival. Diminutive Alma Ross described herself as a “grass widow” during her marriage. Norm her much loved husband, was always at the local sporting club. They even have a plaque in the grounds describing him as “our mate.” “I always knew where he was,” Alma told PCFA. “I’d just ring the sports club and there he’d be.” So it seemed logical to Alma that a sports carnival was the ideal way to honour Norm’s memory and raise funds to fight prostate cancer. However this might not have been everyone’s first thought. North Stradbroke Island is the ideal place to sit back and watch the world go by. It exudes a peaceful “get away from it all” ambience and visitors always begin to relax as soon as they arrive. Underneath that sleepy exterior however there lies a powerhouse community that punches well above its weight. So far the Norm Ross Memorial Annual Cricket Carnival has raised almost $45,000 for PCFA. “This is our seventh consecutive year of this event and we are determined to do all we can to stop this terrible disease,” Alma said.

New pcfa Office opens in Adelaide Thursday 9th May 2013

We need YOU to join team ‘Save a Man’ for PCFA this running season Check out the great running events you can sign up to TODAY and raise funds to help save our men in 2013. 11 August Sydney City2Surf 14km fun run from Sydney CBD to Bondi 25 August Pub2Pub 13km fun run and walk from Dee Why to Newport Arms Hotel UP 22 September Blackmores Sydney Running Festival choose from a 3km family run, a 9km Bridge Run, a half or full marathon taking in Sydney’s most famous landmarks When entering any of the above runs, don’t forget to choose Prostate Cancer Foundation of Australia as your chosen charity. An online fundraising page will then be set up for you.

His Excellency, Rear Admiral Kevin Scarce AC CSC RANR, Governor of South Australia, officially opened the new PCFA- SA & NT office in May. The Adelaide contingent, including most of the local Board were joined by representatives from NT and rural South Australia as well as National Chairman, David Sandoe OAM; CEO, Dr Anthony Lowe and Head of Marketing and Fundraising, Lisa Cheng. Among those acknowledged in speeches were Hotel Care Community Projects, representing the South Australian Hotel Industry who committed $30K to the fit out of the office, Charles Simpson and David Black, the building owners, for also making significant contributions; Peter Engel, Craig Norman from Wholesale Plants and Products and Northcote Pottery for their astounding assistance with plants and pots. And last but not least Peter and Margaret Lehmann, Grant and Helen Burge and Coopers Brewery, for refreshments.

RESEARCH

PCFA’s new research strategy and funding set to revolutionise Australian prostate cancer research Movember and PCFA launch new funding for prostate cancer research Prostate cancer research in Australia will reach new heights over the next five years with PCFA and The Movember Foundation recently launching a new multi-million dollar research venture to deliver more opportunities to existing and future researchers in the prostate cancer field, including the new $5.25m Movember Revolutionary Team Award.

PCFA would like to recognise The Movember Foundation as a key funder of its National Research Program

unded exclusively by Mo Bros and Mo Sistas, The Movember Foundation is committed to changing the face of men’s health through awareness, research and programs for men’s health. In 2013 two Movember Revolutionary Team Awards will be granted, totalling $10.5m. This significant initiative is part of Movember’s global research strategy to build powerful, collaborative teams to achieve faster outcomes that contribute towards elimination of deaths from prostate cancer and enhance physical and mental wellbeing of men living with the disease. The Movember Revolutionary Team Awards will see the development of two multi-institutional teams who will dedicate their time to developing new targeted treatments for metastatic disease, address resistance issues of advanced prostate cancer, seek new treatment options for advanced prostate cancer, and to tackle the critical challenges associated with localised disease. Jason Hincks, Movember COO said, “We are humbled by the extraordinary efforts of Mo Bros and Mo Sistas around the globe, who not only raise funds but also awareness for men’s health. The Australian Mo’s can stand proud today, as the money they’ve worked so hard to sprout and grow is committed to this revolutionary approach to prostate cancer research”.

According to Paul Villanti, Movember’s Executive Director Programs, Movember is looking to support a game-changing approach to the way prostate cancer research is undertaken in Australia. “A Movember Revolutionary Team must demonstrate that the whole team working together as one will be greater than the sum of the parts. This award seeks to transform the clinical management of prostate cancer by supporting scientific and clinical teams across institutions that are committed to this approach. “By taking into account the feedback and views of scientists, men’s health organisations and other interested parties, our five year plan will deliver a clear map of future priorities. Thanks to the generosity of The Movember Foundation, PCFA has been able to invest over $30 million into research projects across the country. We are thrilled to be getting another awards program off the ground,” said Dr Lowe. The chosen teams will receive funding over three years with renewal based on an international peer review process.

PCFA launches new Priority Driven National Prostate Cancer Research Strategy

o mark the start of its Annual Research Update held on 7 June in Melbourne, PCFA announced its 20132017 Research Program Strategy which seeks to bolster the current Australian research workforce in prostate cancer. Funding prostate cancer on a competitive basis with the aim of reducing the burden of prostate cancer nationally has been one of the major goals of PCFA. Research funding dates back to 2004 when we first awarded two fellowships to talented postdoctoral fellows, Dr. Lisa Butler and Dr Sue Henshall, both of which have gone on to be promoted to Associate Professor and conducting independent cutting edge research. Since then, thanks to the generosity of Movember we have invested nearly $30M in prostate cancer research nationally. An evaluation of PCFA’s investment in prostate cancer research since the establishment of its structured program in 2007 has shown than this funding has had a major impact in our community. Completed and ongoing research continues to deliver outcomes which have contributed to a high level of innovation and increased Australian prostate cancer research profile. Funding provided through our national program has mostly been catalytic. However, the availability of this seed funding has increased research capacity that might otherwise remain immature. This is reflected in the progress of a number of projects across the board. We are proud of these achievements and look forward to continuing to make significant impact in the field by providing the financial support needed to find better tests for the diagnosis of prostate cancer, to accelerate the pace

Dr Lisa Butler

of discovery of new therapeutics and to better manage the disease for those living with prostate cancer.

The program will create new knowledge by focusing on the following key areas:

However, the burden of this disease in our country remains high. Changing the current statistics will require a major effort on the part of our research community, better collaboration, higher rates of translation of research results and achievements that warrant changes in the current standard of care and policy.

n Growing and strengthening PCFA’s research funding base for the established Research Program.

PCFA’s new priority driven funding approach has taken into account some of the changes that need to be made in order to achieve these results. PCFA’s new strategic, priority driven action plans aims to build on the success and outcomes of the past research investment and ascertain that milestnes and discoveries made in the future will directly impact on the quality of lives of Australian men that are or will be diagnosed with this disease in the next five years.

n Increasing the national and international collaboration between prostate cancer research teams. n Diversifying the Research Program by supporting innovative projects and accelerating current research into clinical trials. n Supporting and promoting sustainability for the Australian prostate cancer research workforce. To read the full publication of PCFA’s Research Program Strategy 2013-2017 visit www.pcfa.org.au

AWARENESS

Pcfa Ambassador Program Update The Ambassador Program recently held training for QLD based speakers on April 17-18th in Brisbane and in Perth on 29-30th June.

“The training in Brisbane was professionally done and the mix of old and new faces gave a warm feel to the event. I’m sure that all who attended are looking forward to providing this information professionally to a whole new audience.”

The dedication and heart of PCFA’s newer Ambassadors was also present in Brisbane. “As the wife of a man who was taken by the disease, and a mother of two sons, I want to do as much as I can to help make aware our society, both male and female, how crucial early detection and awareness is, something that may have saved my husband’s life”, added Bonnie Teschner of Oakey, QLD.

ttendees brought with them a range of backgrounds and expertise, and the training was an opportunity for them to familiarise themselves with the revised presentations, practice their public speaking skills, and learn from one another. “The latest program gives more options for speaking engagements, and all with the latest researched facts”, commented Geoff Lester, an Ambassador from Gladstone, QLD, who has been with the program since its inception.

Training sessions for the other states are now scheduled, and we encourage interested parties to become involved.

The training schedule for 2013 is as follows: Victoria and Tasmania Melbourne, July 27-28th South Australia and Northern Territory Adelaide, August 24-25th New South Wales and ACT Sydney, September 14-15th With a number of Ambassador events held during International Men’s Health Week (June 10-16th), Ambassadors are out there presenting to varied audiences in both metropolitan and rural areas across Australia. If you are interested in becoming an Ambassador, or to book an Ambassador for your workplace or community group, please contact ambassadors@pcfa.org.au

Government joins fight against advanced prostate cancer Thousands of Australian men and their loved ones are breathing a collective sigh of relief at news the Federal Government will list advanced prostate cancer therapy ZYTIGA® (abiraterone acetate) on the Pharmaceutical Benefits Scheme (PBS).

pproved for use in Australia in early 2012 for men who have exhausted other treatment options, ZYTIGA is considered the biggest breakthrough in the treatment of advanced prostate cancer in the past decade. “This is fantastic news for the prostate cancer community. Affordable access to therapy at all stages of the condition is vital and the Minister’s decision to include the therapy on the PBS highlights her commitment to all Australians touched by prostate cancer,” said Dr Anthony Lowe.

“With 3,300 lives claimed by prostate cancer every year, the availability of new treatments for advanced prostate cancer is long overdue,” he added. ZYTIGA will be available on the PBS from 1 August 2013 for the treatment, in combination with prednisone or prednisolone, of castration resistant metastatic carcinoma of the prostate in a patient who has failed treatment with docetaxel (chemotherapy).

Advanced prostate cancer – where cancer cells have spread beyond the prostate – is the second most common cause of cancer deaths in Australian men. The number of lives lost to the disease has increased by 20 per cent in the last decade. “We look forward to seeing increased access to new therapies for even more patients with advanced prostate cancer in the near future,” Dr Lowe concluded.

Rural Education Roadshow Piloted in Port Pirie, SA The very first PCFA Rural Education Roadshow events were held on 20 and 21 March this year in Port Pirie South Australia.

he Rural Education Roadshow brings prostate cancer specialists from urban and regional centres to rural health professionals and community members. The Port Pirie Roadshow was attended by the following specialists from Royal Adelaide Hospital: Urologist Nick Brook; Radiation Oncologist Braden Higgs; Medical Oncologist Hsiang Tan and Prostate Cancer Specialist Nurse Lauren Wood. As the first Roadshow event, it was also the first time the material (developed by a panel of experts in prostate cancer) was being delivered. Both sessions ran smoothly with the Question and Answer sessions bringing up some lively discussions, demonstrating participants’ thirst for more information. The data from evaluations collected has indicated the sessions have increased participants’ level of understanding of prostate cancer, with one member of the audience at the community session proclaiming: “This is the best session I’ve attended!”

The Rural Education Roadshow program has undergone some tweaking since Port Pirie and the program is now ready to roll out across Australia! PCFA would like to thank Allan and Joan Manfield for their assistance to help spread the word on the ground to community members and health professionals, the Royal Port Pirie Yacht Club for allowing us to use their venue, Fork and Cork catering company for their delicious refreshments and all the members of the Port Pirie Prostate Cancer Support Group for supporting the Roadshow. Note: At the time of writing the Roadshow was visiting Gove and Katherine in the Northern Territory

Rural Education Roadshow confirmed dates:

Stay tuned for more news on the PCFA Roadshow Program and updates direct from the road via www.pcfa.org.au, Facebook and Twitter

Other Roadshow sites will include (with dates pending);

State

Site

Date

Emerald

12 August

QLD

Gladstone

13 August

VIC

Bairnsdale

28 August

NT – Alice Springs

VIC

Swan Hill

18 September

Berri

6 November

NSW – Armidale, Forster, Kempsey, Port Macquarie

ACT – Canberra WA – Albany

TAS – Burnie

SUPPORT

National Support Group Leader Training Conference

One of the ple

nary sessions

The inaugural PCFA National Support Group Leader Training Conference took place at the Pullman and Mercure Albert Park, Melbourne in May, and was both rewarding and enriching for all involved.

he event, which was funded by a Federal Government grant through Cancer Australia, brought together over 200 delegates representing 117 PCFA affiliated support groups from every State and Territory, and allowed people to share their personal experiences and best practices whilst also attending informative and pertinent presentations and workshops. A number of esteemed men’s health researchers and health professionals presented on various topical issues such as handling post treatment side effects, psychological effects of a prostate cancer diagnosis, sexual function and the latest updates on research and clinical trials. In addition to these, each delegate attended three facilitator-led workshops: Group Purpose Statement and Group

Agreement; What to Say to Potential New Members; and Group Promotion. Throughout the training conference, delegates had the opportunity to visit a number of exhibition stands where they could gather information on various matters including continence, clinical trials, medical equipment and other prostate cancer and health-related topics. The Gala Dinner gave everyone the opportunity to relax and enjoy each other’s company whilst Andrew Wilkie MP, who with former PCFA National Director David Gregory was integral in PCFA receiving the $3.9 million federal government grant, spoke about the importance of support groups and increasing the nation’s awareness of prostate cancer and its effect on men and their families.

According to Dr Anthony Lowe, Chief Executive of PCFA, continued training and the latest in evidence-based knowledge for support groups is a long term priority for the organisation to ensure men affected by the disease continue to have access to quality supportive care. “PCFA has a long term goal to provide quality training and guidance to all our prostate cancer support groups. Following our first training conference we have gained valuable insight that will help us strengthen what already is a wellrecognised support group network,” said Dr Lowe. Copies of the program booklet and all presentations and workshops are available at www.pcfa.org.au

The Long Ride Story T

he Long Ride has been in operation for seven years with 2013 being the sixth ride as a fundraiser for PCFA. Concurrent with its fundraising agenda, however, is a massive commitment to spreading awareness of men’s health: A commitment recognised and supported by prostate cancer support group members around Australia. The Long Ride started near every capital city in every Australian State and Territory. Culminating in almost 1.6 million kilometres ridden with the 411 riders convening in Cairns, the oldest

rider was 84 and the youngest, 11. An amazing $250k has been raised to date. As the rides different groups wound their way through each State and Territory, interaction between support group members and riders became common place, with support group members expressing their appreciation for The Long Rider’s amazing efforts.

The Long Ride is over for another year but the memory of their commitment and dedication is with each and every prostate cancer support group member across the country. No longer is prostate cancer the hidden cancer. Men and their families and friends with or without prostate cancer are standing together as one.

Vale Don Baumber Much admired and respected prostate cancer consumer advocate and PCFA Queensland Board Member Don Baumber passed away on Wednesday 3 April 2013 surrounded by his family.

on was passionate about the need to find better treatments and a cure for prostate cancer and dedicated much of his life to this pursuit. Don made an outstanding contribution to PCFA and many other cancer and consumer bodies. Don attended the first gathering of all support groups at Darling Harbour in 2001 and from the outset he impressed as a very passionate worker for the cause. He was held in high regard by the many medical specialists and most notably during this period Don produced a key paper on the PSA test entitled: “Informed Choice”. The paper did much to steady the controversy at the time, and provided clarity in regard to PCFA’s policy which was to support awareness and informed choice rather than community screening. Don’s contribution to the prostate cancer community was far-reaching. His value was recognised in 2004 when he was elected as Co-Chairman of SAC with PCFA’s now National Chairman, David Sandoe OAM. During this time he did a great deal to bring the Queensland support groups into the national PCFA Support Group fold and together they worked on the development of the national team. In April of 2007 Don became an inaugural member of PCFA’s Queensland Board and in November of 2008 he was awarded PCFA’s prestigious Max Gardner Award for distinguished service.

Don’s eagerness to be involved in the prostate cancer community saw him on the consumer network Cochrane Collaboration in 1998 – 2007 as an international contributor, always strongly promoting the consumers’ perspective. He kept himself up to date with the latest research and evolving new treatments. Don was a founding member of the Australian Cancer Network when a working party was set up to develop clinical guidelines for treatment of Advanced Prostate Cancer in Australia for NHMRC approval. This in turn was developed as a guideline to the Consumer Version of the Advanced Prostate Cancer publication. His involvement with Cancer Voices Australia, Consumers Health Forum and Multidisciplinary Care in Australia kept him busy on many working parties and reviewing literature and advertising materials for a range of cancer groups. Also, with the Australian Prostate Cancer Collaboration, led by Professor Villis Marshall AC from Adelaide, he was invited to be on the Education Committee. Don’s connections through other involvements soon had him serving as the consumer representative on the Executive Committee. As so many of his colleagues in Queensland and around Australia have said he took the initiative and showed great perseverance. This persistence in personally seeking curative treatment, through the diagnostic procedures obtained nationally and internationally, led to him extending the quality of his own life and that of many others.

We are proud to call Don one of PCFA’s most dedicated champions - his ideas, expert opinions and involvement have contributed significantly in the evolution of the present day PCFA - the broad community based peak body for prostate cancer in Australia.

“Don was passionate about the need to find better treatments and a cure for prostate cancer and dedicated much of his life to this pursuit.”

HEALTH PROGRAMS & NURSING On the Ground with

Lachlan Circuitt

Prostate Cancer Specialist Nurse, Alan Walker Cancer Care Centre, Royal Darwin Hospital

tanding next to a couple of blokes in bright colour safety work wear, I was asked “so what do you have to do with Movember and this place” It was a simple question but an important one I’d been asked by Kane. Standing under a rather large ‘Mo’ out the front of the Hospital. “I’m the Prostate Cancer Specialist Nurse at Royal Darwin Hospital. Prostate Cancer Foundation of Australia is able to fund this position though the kind and generous funding from Movember.” The look on Kane’s eyes was that of amazement. “So our money really does do things for men’s health.” Nodding, I realised that you don’t always get to see where fundraising money goes. After the photo shoot finished, Kane came up to me and started to ask what my role was and what I do. I explained that I help men with prostate cancer. I further explained that I help navigate their ways though the hospital system; that I also can talk to them about different types of treatment for their cancer and to help sort out problems resulting from their treatment. I also said that I will sometimes do some health promotions. The next thing I knew, Kane was giving me his contact details and then the details for another bloke called Shane with a request to give a quick “ talk with the boys.” A couple of days later I called Shane on “Yer, Kane said that you need to get out here and have a chat to the boys and promote prostate cancer”. Well I was taken aback as I’ve had people say “call us” only to call a couple of days later to get “we’re not that interested” type of line. Over the next couple of days, and a couple of emails, my presentation was ok’ed by these guys and I had three different dates that I was going visit to make sure I got all the blokes in the workshop. It’s at this point I decided it

was time to find out where I was going and who and what “Hastings Deering” was. Well I then found out that Hastings Deering has a huge workshop where they take the big Cat (Caterpillar) mining equipment to repair, rebuild or service. I couldn’t believe how I had missed the fact that this was one of my dreams come true, and I had just been invited to visit not just once, but three times. So on the 26th November 2012, I headed out to the workshop. I made sure I got there a little bit earlier than needed. I just had to see if I could have a little look around. I couldn’t help myself; it’s not every day I’m allowed into a workshop that’s not my balcony. It really was a dream coming true. Shane was wonderful, giving Carson (one of the Radiotherapists had jumped at the offer to visit the workshop) and myself a quick tour around the workshop and plant area. As much as I tried to assure Shane that one of their big straight six turbo diesel engines sitting around in the warehouse would fit under the bonnet of my car, he just laughed. The tour was over and it was time to grow up and do what I had been asked to do. So, still in my safety vest and safety goggles, we headed up to the meeting room. I presented to about 13 men about prostate cancer. This included when to get tested, how to get tested and what to look out for. Then we spoke about the different methods of treatment of prostate cancer and options if the cancer came back or did not respond. I was a little nervous not knowing how it would be received by the men. I thanked Shane and let him know that yes I would be back the next day, and headed off home. So Tuesday morning I headed back out again to Hastings, this time solo.

Not knowing how the small number of men had taken the presentation, I was welcomed back by Shane and taken straight upstairs to the meeting room dressed again in the safety vest and goggles. I walked into the room then stopped dead in my tracks. The room was packed! So after adjusting to the fact that it was a full room, I was introduced again by Shane and off I went again through the presentation. After I finished, I thanked everyone for giving up some of their busy day and for blocking the door so I could not run away when I first walked in. I headed back two days later to the last of the presentations this time for the workshop, parts and warehouse departments. This time I dragged Dr Sid Baxi along with the promise that it was big. Sid was impressed. We went through the presentation again and then Shane took Sid and I for a tour of the workshop, parts warehouse and packing lot with some of the ‘big equipment’. The presentation was well received by the men, with many questions. I was asked by young men who wanted to know where they could send their fathers for a proper check up on their prostate health and some of the older men were very interested and asked questions about being tested. Shane and I agreed that we would like to repeat the presentation again this year. I’m hoping to be able to continue this over the next couple of years. One of the current plans is extending this out to other businesses around Darwin who are interested in men’s health and prostate cancer in particular. I look forward to seeing how this evolves. Lachlan Circuitt Prostate Cancer Specialist Nurse

PCFA publishes Framework and Standards for the Prostate Cancer Specialist Nurse Another milestone in the Prostate Cancer Specialist Nursing Service was achieved just recently on the eve of the first anniversary of the program with the publishing of the Practice Framework and Competency Standards for the Prostate Cancer Specialist Nurse.

he Practice Framework describes the scope of the Prostate Cancer Specialist Nurses roles at both a clinical and strategic level to both inform and influence practice at an advanced level. A diagnosis of prostate cancer causes significant anxiety for men and their families. Complex multimodality treatment pathways, potential long term side effects, and prolonged surveillance programs requiring ongoing hospital visits, all add to the burden of prostate cancer. Within the Australian context, regional and rural patients are further disadvantaged, often having to travel significant distance to access equitable care, and are recognised to have poorer health outcomes. Despite strategies at both the local and national level to improve the outcomes for cancer patients, navigation of services and a lack of expert supportive and specialist

nursing care remain frequently reported issues by those accessing cancer services. The role of the Specialist Nurse in the care of patients with many types of chronic illness, including some cancer types, is well recognised and integrated into clinical practice at both a national and international level. However, there remains no accredited defined Prostate Cancer Specialist Nurse position within Australia, and this can potentially lead to variations in practice. Prostate Cancer Foundation of Australia has undertaken to produce these guidelines for practice to aid in the definition of a best practice model for the Prostate Cancer Specialist Nurse within the Australian health care context. During the development of the guidelines, a series of consultations were held with key stakeholders in health care delivery, strategic service development and selected nursing professional bodies, representing all

States and Territories across Australia, with site visits to a selection of prostate cancer treatment centres. An extensive literature review was undertaken to scope existing work in this field. The main contributory pieces to the published document are the Australian Nursing and Midwifery Council Registered Nurse Competency Frameworks and the National Cancer Nursing Education Project Professional Development Framework for the Specialist Cancer Nurse. Both pieces are acknowledged as best evidence frameworks for nursing practice in Australia and provided the structure for these guidelines. PCFA is grateful to all those who freely gave their time to contribute to the development the publication and would like to acknowledge the efforts of all nurses dedicated to reducing the impact of prostate cancer on the community.

PCFA is pleased to announce the recipients of the 2013 Nursing Grants. ANZUP

CNSA Conference Grant

Julia Hunter –Royal North Shore Hospital, NSW Daisy Buchanan – Prince of Wales Hospital, NSW Cathy Xu - Sydney Cancer Centre, Concord Repatriation Cancer Centre, NSW

Caroline Woolmer – Cabrini Health, VIC Andrew Pilcher – Peter MacCallum Cancer Centre, VIC Cheree Masterson – Alfred Health, Victoria Katherine Baycheck – Royal Prince Alfred Hospital, NSW Alison Davey – Wodonga, VIC

Prostate Cancer World Congress Virginia Ip - Royal Prince Alfred Hospital, NSW Cara Webb – Austin Health, VIC Robyn Bolger – Austin Health, VIC These grants enabled the nurses to attend these conferences.

fundraising The Male Bag Riders deliver more than $400,000 for PCFA providing the funds to launch an important new initiative.

The Male Bag Ride 2013 A group of 26 intrepid men have raised over $400,000 for PCFA by riding from Perth to Melbourne on former postie motorbikes.

he ‘Male Bag Ride’ was devised by Julian Dewan and Tony Clayton, who led the 4,500km journey onboard Honda 110cc bikes. “We started The Male Bag Ride, as we see the Postie Bike journey from Perth to Melbourne as the perfect platform to raise much needed funds for Prostate Cancer Foundation of Australia and awareness for prostate cancer,” said Dewan. Having initially hoped to raise $200,000, the group more than doubled their target and helped spread the work of PCFA by attracting huge media attention across Australia, which included a fantastic feature on Channel Ten’s The Project. The men raised funds through online donations and sponsorship, including principal sponsors Australia Post, Boral, Bendigo Bank, The Murray Meander, Honda, Adelaide Airport, Qantas, Perth Airport, Grill’d, Cyclotek, Fasco Air Systems and Wolf Blass. They also raised funds along the way through fundraising events including a “Sport Night” in Adelaide. The event was attended by numerous guest speakers, including basketball legend Jan Stirling and Olympic cyclist Patrick Jonker.

The adventure of a lifetime took the men 11 days to complete, with the group experiencing sleepless nights, police escorts, numerous media stops and huge support all along the way. The ride ended in style at Melbourne’s iconic MCG, where the men took a rest to watch a game, making an honorary lap of the stadium during half time, when the cheque was presented to PCFA to huge cheers from the crowd. AFL legend David Parkin OAM was the proud Patron of the ride and also joined the men along the way. “I personally admire what this group of men is doing in order to raise awareness of prostate cancer in the community,” said Parkin. “Together, we can break down the barriers of embarrassment that men have when discussing male cancer so that diseases such as prostate cancer are caught much earlier.” The money raised from the Male Bag Ride will go towards funding a very important initiative aimed at bringing some clarity to the controversy around PSA testing. “PCFA’s 2012 Community Attitudes Survey showed that almost 40%

of men find the advice about PSA testing is confusing. That is why we need evidenced-based national clinical guidelines to bring some order to PSA testing debate. The guidelines will maximise the lives saved through testing, whilst minimising the negative side effects. I am pleased to report that with the support of the Male Bag Riders, PCFA can now confidently progress this project in partnership with Cancer Council Australia and, of course, our urologist, pathologist and epidemiological colleagues.,” said Dr Anthony Lowe. Dr Lowe was also keen to praise the efforts of Dewan, Clayton and their team of riders. “We are very proud and grateful to be the recipients of this incredible fundraising event,” he said. “These men have raised awareness of prostate cancer to the many hundreds of people they spoke to along their journey and through the media attention the ride attracted. As a result of the funds raised the men will have a lasting national and international legacy by funding the evidence-based National Clinical Guidelines on PSA Testing.”

Big Aussie Barbie Let’s turn up the heat on prostate cancer

o mark International Prostate Cancer Awareness Month, PCFA will once gain be launching its Big Aussie Barbie campaign across Australia this September. Last year, thanks to all our fantastic barbie hosts, we raised an incredible $800,000. This year, we have really turned up the heat and aim to raise $1 million. We cannot achieve this without the support of the community, so we hope you will get together with friends, family and your community to host a barbie and show Aussie men we care! You can register your Big Aussie Barbie now at www. bigaussiebarbie.com.au

To help us reach our goal, PCFA is lucky to have CBA as our major sponsor for the Big Aussie Barbie for the next two years!

We are also excited to announce that cricket legend Matthew Hayden will be the celebrity Big Aussie Barbie ambassador. Matthew is very passionate about PCFA’s work, as his father has been diagnosed with prostate cancer. Keep an eye on your TV screens from July to September, as you will be able to spot Matthew starring in our Big Aussie Barbie TV commercial. PCFA will kick start the Big Aussie Barbie season with interactive launch events across the country. Currently, 3,300 men die from prostate cancer every year. Make your barbie count this year, hold it in September and turn it into a Big Aussie Barbie. With your sup port in 2013 we can raise $1.2million. Make sure you put these dates in your diaries and check our Big Aussie Barbie website for more information on what will be happening at each launch. We guarantee it’s not to be missed!

Barbie Launch Dates Sydney

Customs House Tuesday 20 August

Adelaide

Metropolitan Fire Service Friday 30 August

Melbourne

Federation Square Tuesday 3 September

Queensland

The Queens Street Mall Tuesday 3 September

Central Park Friday 6 September

I’m delighted to be involved in the 2013 Big Aussie Barbie. This great campaign raises both awareness and much needed funds to help fight prostate cancer – a disease that affects over 20,000 men every year in Australia. Unfortunately, one of these men has been my father, so I give my full support to the incredible work that Prostate Cancer Foundation of Australia does. Matthew Hayden, former Australian test cricketer.

TOGETHER WE CAN TURN UP THE HEAT ON PROSTATE CANCER Every three hours, a father, brother or son dies of prostate cancer – a disease that kills more men than breast cancer kills women. But if we get together, we can make a difference. September is Big Aussie Barbie month, your chance to combine great friends and great food for a really great cause. Register your Big Aussie Barbie fundraiser now.

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OPINION

Focal Therapy – Are We Ready? A/Prof Phillip Stricker, Chairman, Department Urology at St Vincent’s Clinic; Director St Vincent’s Prostate Cancer Clinic

On 17th April a conference on the emerging data on new techniques of imaging with MRI, biopsy and focal therapy was convened by A/Prof Phillip Stricker at St Vincent’s Hospital in Sydney. The reason for the conference was to highlight the impact MRI and newer biopsy techniques are having and how they have potentially opened the way to less invasive focal therapies. A/Prof Stricker and Prof Mark Emberton demonstrated two cases of focal therapy live to the audience who were a mixture of urologists and radiologists. A/ Prof Stricker emphasized that focal therapy is in its infancy and only for a highly select, strictly controlled, group of patients who refuse whole gland therapy and are not ideal for active surveillance. Focal therapy is an emerging treatment option for prostate cancer, but is it really ready for the mainstream? We have learned a lot since PSA testing was introduced in the 1990s. A number of randomised controlled trials, most notably PLCO and PIVOT in the US, have failed to show significant mortality benefit from radical treatment. The European trial, ERSPC, does show a mortality benefit, but also significant overtreatment. The side effects of treatment – urinary incontinence, erectile dysfunction and bowel problems – associated with whole gland therapy are well documented. Active surveillance is now a common treatment option for low risk, low grade cancers, but emerging evidence suggests that it too may be associated with side effects, including anxiety. There is also early evidence that erectile dysfunction may result. Furthermore, there is a group of cancers which are not ideal for active surveillance but are potentially over treated with whole gland therapy

For these reasons focal therapy has emerged as a possible treatment option. Early stage significant prostate cancer should really have a treatment that cures the cancer; is minimally or non-invasive; one that can be performed in a single session and that carries less of the side effects of radical treatment. The concept behind focal therapy is treatment that affects only the cancer with no damage to the adjacent vital structures, including those structures which affect continence and sexual function. In many ways focal therapy can be regarded as the male equivalent of lumpectomy for localised breast cancer – removal of just a small cancerous lump rather than the whole breast. These are the promises of focal therapy, but there are uncertainties. First, men with prostate cancer usually have multiple small lesions and a single larger one. Focal therapy relies on the, as yet, unproven theory that the main or “index” lesion is responsible for the spread of the disease beyond the prostate. But what if any one of the many other microscopic lesions could also be responsible for secondary disease? Up to now it has also been difficult to accurately locate the position of the cancerous tissue. Finally, there is a bewildering array of possible focused energy sources to destroy the tumour, including high intensity focused ultrasound (HIFU), cryoablation, brachytherapy and the nanoknife. Perhaps one size does not fit all.

At this stage we have not gathered sufficient evidence to conclusively demonstrate that focal therapy is effective at curing disease and that it leads to fewer side effects. Notwithstanding this, some have argued that we are on the verge of a paradigm shift in the treatment of a select group of men with localised prostate cancer away from removal of the whole gland towards focal therapy to remove only the cancerous tissue. Such a shift would be analogous to the shift from radical mastectomy many years ago to lumpectomy and radiation therapy for localised breast cancer today. What has really underpinned this view is improved imaging. We now know that a good multiparametric MRI is greater than 90% sensitive in detecting clinically significant prostate cancer when compared to radical prostatectomy specimens. Multiparametric MRI can detect up to 80-95% of tumours; can differentiate between low and high grade disease; can delineate tumour shape and therefore should be able to assist in guiding the focal energy source to the tumour. Better biopsy techniques, including transperineal biopsy, have also helped focal therapy to gain a foothold. In conclusion, there is now early evidence that focal therapy may be an option for a select group of men. It is certainly, however, early days and we need to proceed carefully after informed consent with careful follow up to find its future role.

PCFA acknowledges significant contributors to its vision Each year PCFA acknowledges a number of significant individuals who have made a lasting contribution to the work of the organisation through a series of awards and presentations.

hese awards – the Max Gardner Award, the PCFA Award, acknowledgement of retiring Chapter Councillors and the presentation of Honorary Life Membership - hold great significance for the organisation as they recognise the exceptional efforts of people who have pioneered the PCFA vision and represent the true spirit of the organisation, the origins of the cause and the founders of the organisation who had such a great vision for supporting men diagnosed with prostate cancer and their families. This year the awards and acknowledgements were presented to:

Max Gardner Award – for distinguished service to PCFA’s support group network Terry Wheeler David Gregory Les Payne PCFA Award – in recognition of an exceptional contribution to prostate cancer research and in raising awareness of prostate cancer in the Australian Community Dr Carole Pinnock AM

Stephen Dut ton from Pi rtek eir award CBA with th

Retiring Chapter Councillors NSW/ACT John Allen Keith James Graham Staggs John Trollor Phil Webster Terry Wheeler VIC/TAS Peter Gebert Max Shub Jim Reid Russ Wilson Honorary Life Membership Mrs Connie Cameron PCFA was again privileged to have the use of the residence of the Prime Minister, Kirribilli House, for the annual NSW /ACT PCFA Supporter Thank You event on 19 June where the NSW/ ACT recipients of these awards were made. The venue also provided the perfect backdrop to acknowledge and thank an exceptional group of community fundraisers, corporate and individual supporters in NSW and ACT who have contributed to PCFA’s work in the past year.

Acknowledgements were given to the following NSW based organisations, groups and individuals on the evening: Commonwealth Bank Pirtek The Tradies Group Horizon Committee Bayer Roads & Maritime Services Steadfast Foundation Macquarie Group Foundation Protrust The Long Ride 2013 ICAP Charity Day That’s a Dam Good Beard Reach for the Stars The Victory Ball Mango Auction Thiess PCFA Fundraiser Table4Ten Surf Club Kingscliff Biggest Ever Blokes Lunch - Paddle for Prostate Ryde Rotary Golf Day BT Financial Services Cancer Walk Association Financial Advisors Bull ‘N’ Bush Hotel PCFA Fundraiser Chris Simpson Beard Shaving Cape York Challenge Breast & Prostate Cancer Assistance NSW Golf Club

Partnerships

Federal Government helps secure future of prostate cancer nurses Following the announcement that cancer funding is a priority for the 2013-2014 Federal Budget, Prostate Cancer Foundation of Australia (PCFA) is delighted that $7.2 million is being allocated to the Prostate Cancer Specialist Nursing Program.

ederal Minister for Health Tanya Plibersek announced the additional funding on 14th June at St Vincent’s Hospital in Sydney alongside PCFA National Chairman, David Sandoe OAM, Movember’s COO, Jason Hincks, members of the Nursing Program and locally based Support Group members. The funding will double the number of nurses in the existing PCFA service with 13 additional nurses being placed in areas of greatest need around Australia. PCFA will work closely with the government to determine the best locations of the nurses. PCFA, with the generous support of The Movember Foundation, launched the specialist service in May 2012 to address the needs of people living in metropolitan and regional Australia who have been affected by prostate cancer. The Movember Foundation contributed $3.6 million to secure the program and recruit its first nurses. The existing program has now placed twelve nurses in major metropolitan and regional hospitals in Queensland, New South Wales, ACT,Victoria, South Australia, Tasmania, Western Australia and the Northern Territory. Dr Anthony Lowe, Chief Executive of PCFA, commended Minister Plibersek for recognising the needs of prostate cancer survivors and delivering

additional resources for Australia’s only prostate cancer specialist nursing program. “This is a significant day for the Prostate Cancer Specialist Nursing Program. PCFA is enormously grateful to The Movember Foundation for having the vision to support the pilot program which has enabled us to lay the foundations for the service. And we applaud the Federal Government for its tremendous efforts to help sustain such an important program. This will allow the recruitment of more nurses to help meet the needs of prostate cancer patients. It is a wonderful partnership model,” said Dr Lowe. According to PCFA’s Director, Health & Education Programs, Julie Sykes, the program has shown promising results in its first year with many families already benefiting from the free service. “A diagnosis of prostate cancer causes significant anxiety for men and their families. Men not only face the prospect of treatment, but also may have to live with long term side effects, and face prolonged surveillance programs requiring ongoing hospital visits, sometimes involving multiple specialists. The Prostate Cancer Specialist Nurses are a central point of contact to help men navigate this process.”

For more information please visit www.prostate.org.au

“We are very excited about having these much-needed additional resources to take the program to the next level. The need for expert advice and ongoing support for those affected by a cancer diagnosis is well-recognised in all types of cancer,” said Mrs Sykes. Sharon Slack, the PCFA Prostate Cancer Specialist Nurse in Tamworth, added that the announcement means more men and their families will be able to access the service. Jason Hincks, Movember’s COO, has expressed his excitement over the Federal Government’s latest contribution. “Movember is proud to be catalytic funder of initiatives that improve the lives of men, such as the Prostate Cancer Specialist Nurses Program. We are delighted that the Federal Government has taken the decision to invest in the program, thereby dramatically increasing the number of men with access to such a vital service. This is a proud day for the Movember movement and reinforces the power of the humble Mo,” said Mr Hincks. For further information about the Prostate Cancer Specialist Nursing program or to see which hospitals are hosting specialist nurses, visit www.prostate.org.au