Prostate News ISSUE 54 / October 2013

PROSTATENEWS reducing the impact of prostate cancer

ISSUE 54/OCTOBER 2013

BIG AUSSIE BARBIE LAUNCHES

NATIONAL BOARD Chairman David Sandoe OAM Deputy Chairman Jim Hughes AM Finance & Operations Chris Hall (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) Distinguished Professor Judith Clements (QLD) Emeritus Professor Villis Marshall AC (SA/NT) Professor John Mills

Cover shot: Matthew Hayden launching the Big Aussie Barbie in his home town of Brisbane with local CBA volunteers

CEO Message A

s readers of Prostate News would no doubt be aware, we are currently in the process of developing a new suite of resources, including resources for men with advanced prostate cancer, younger men, gay and bisexual men, and partners and carers. We are also translating key resources into five languages – Arabic, Chinese, Greek, Italian and Vietnamese – and developing a resource for Aboriginal and Torres Strait Islander men. These resources are being developed through the Supporting men with prostate cancer through evidence-based resources and support project, a Cancer Australia initiative funded by the Australian Government.

We have recently launched the first of our new resources, the revised Localised Prostate Cancer Pack, which was developed with generous funding from Gandel Philanthropy. We are grateful to the National Support Group Committee and health professionals for their expert advice and input in the development of the pack. It includes the most up to date information on

the treatment and management of localised prostate cancer. We are also very pleased and proud that all the new resources feature photography of the PCFA community – support group members, ambassadors, Prostate Cancer Specialist Nurses, PCFA funded researchers and health professionals we work closely with. Thank you to everyone who generously agreed to be part of the photo shoot.

The revised Localised Prostate Cancer Pack is now available on the PCFA website (www.pcfa.org.au) and also in USB format. Copies of the packs and USBs can be obtained by calling the National Office on 1800 22 00 99 or by using the order form on the PCFA website. The next of the resources, the Advanced Prostate Cancer Pack, will be available shortly.

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

The new Localise

d Prostate Canc

er Pack

Around the country FIRST OF THE SEASON

SHARK ATTACK! The Southport Australian Rules Football Club – better known as the Southport Sharks – and its members are committed to their community.

For every new membership or membership renewal, Southport Sharks donates $1 from the membership fee to a charity of the member’s choice.

PCFA has been lucky enough to be the beneficiary charity for the auction of the first mangoes of the season held at Sydney Markets each year.

Since 2009 the auction has raised over $95,000 for PCFA. The auction always attracts a huge audience of celebrities and local community. This year Tony Abbot made an appearance and auctioned off the mangoes for an incredible $30,000 to the highest bidder. The morning also included a BBQ, mango eating

competition for the kids, fruit carving and silent and live auction prizes with all donations coming to PCFA and two other chosen charities.

Tony Abbot and Joe Hockey stopped by the PCFA tent and placed their thumb prints of support on our huge artwork dedicated to men who have died from prostate cancer.

We are grateful to the Sydney Markets Foundation for choosing PCFA as their charity year on year.

In addition, every year they host a celebrity lunch with Lambassador Sam Kekovich as MC. Naturally lamb is always served and there isn’t a tofu in sight!

From these events Southport Sharks have raised over seventy thousand dollars for PCFA!

IPSWICH RAFFLE!

Perth Football Club game dedicated to Prostate Cancer Awareness Perth Football club dedicated their home game against Claremont on 24th August 2013 to PCFA, and raising awareness of prostate cancer.

A pre-game Presidents lunch function was attended by local members of parliament and representatives of PCFA. Jeff Newman and brother Peter Newman were guest speakers at the event, and talked about their prostate cancer experience. Over $4,000 was raised for PCFA from proceeds of two auction items and collections at the gates.

The Ipswich Four Wheel Drive Club caters for all four wheel driving needs from the serious, experienced four wheeler, to the absolute beginner and those who just like the social aspects of a weekend or extended trips away. The Club is a proud member of Four Wheel Drive Queensland. Nearly a year ago with some members becoming members of the Ipswich Prostate Cancer Support Group, the Club decided to undertake the mammoth task of conducting a two-dollar-a-ticket raffle to raise significant funds for PCFA. From this mighty effort they presented PCFA with a cheque for twenty-two thousand dollars!

3

RESEARCH

Research Grants Update The research office at PCFA has been very busy in the last few months.

W

e successfully launched the five year evaluation into prostate cancer research and the new funding strategy on July 7th and we are focusing on the peer review process of applications for funding we received on the 31st July 2013.

This year, again, PCFA has been seeking applications in the Young Investigator and New Concept category. We have received a total of 62 applications, 12 of which are within the Young Investigator category and 46 within the New Concept grant category. Newly submitted proposals focus in various areas of prostate cancer from diagnosis and prevention to treatment and survivorship.

A group of national and international expert reviewers will assess the quality of these grants and on October 25th 2013 PCFA’s Research Advisory Committee will meet to make recommendations for funding.

As part of our new funding strategy, in 2013, we also made a major announcement. For the first time, we

called for Expressions of Interest on the Movember Revolutionary Team Award category.

The two Movember Revolutionary Team Awards (MRTAs), funded entirely

by Movember, of up to $5,250,000 over a period of three years, are aimed at supporting translational research teams that are capable of providing the scientific and clinical expertise to have the potential for a near-term, revolutionary and transformative impact on the clinical management of 1. localised or 2. advanced prostate cancer.

The aim of these awards is to: n harness existing strengths; n seize future opportunities;

The central value proposition of this collaborative research approach is the whole will be greater than the sum of the parts with a view to catalyse existing national strengths in prostate cancer in Australia to a position of greater international stature.

On the 31st July we received six bids for these awards. An independent team of internationally renowned scientists in basic and clinical science is currently in the process of reviewing these proposals.

For an update on the outcomes of the 2013 funding round please check the website www.prostate. org.au/articleLive/pages/2013-PCFAResearch-Funding-.html

n foster a collaborative approach to research; and n enable the Australian prostate cancer research community to contribute to a revolutionary impact on the clinical management of prostate cancer.

Living Well with Prostate Cancer – Reminder Living Well with Prostate Cancer is a research project being conducted by Cancer Council Queensland with Griffith University and the ANZUP Cancer Trials Group to find better ways to support men with advanced prostate cancer.

The project is trialling education and mindfulness-based group therapy to see which program best meets the needs of men following a diagnosis of prostate cancer.

If you would like to take part and are eligible for the program, you will receive support information about prostate cancer by mail. Some men will also receive mindfulness therapy sessions over the telephone to assist them with stress management. You would also be asked to answer some questions about your health and prostate cancer experiences at different points over the next nine months. By asking men about their experiences and keeping in touch with them over time, we will be able to identify the best ways to help men in the future. Your participation will help us to improve the support services that are available to men with advanced prostate cancer.

If you would like to know more about Living Well with Prostate Cancer please telephone the Recruitment Officer, Tahlee Marian, on 07 3634 5324.

The man behind PCFA’s Research Program 2007-2013 Professor John Mills recently retired as the Chair of PCFA’s Research Advisory Committee after pioneering PCFA’s research program and strategy from the start in 2003. We are indebted to John for his vision and commitment to prostate cancer research in this country. Here we reflect on the man and the legacy he has left.

Professor Mills is a specialist physician, medical scientist and businessman.

He received a BS (Hons) from the University of Chicago and an MD (Hons, with specialisation in microbiology) from Harvard Medical School and holds Fellowships in the American College of Physicians, the Royal Australian College of Physicians and is an Associate Fellow of the Royal College of Pathology of Australasia. Professor Mills has been actively involved in patient care since 1966, and retains a small clinical practice at the Alfred Hospital Melbourne. He holds professorial appointments at UCSF, Monash University and RMIT. Conducting medical research since 1961, Professor Mills has more than 200 peer-reviewed publications reporting original research, plus numerous reviews, book chapters and edited texts. He has been on the editorial board of several journals, the recipient of a number of prestigious awards, and is currently actively involved in research review and administration. Since 1992, Professor Mills has been involved in biomedical business, and is currently a Director of TissuPath P/L, a specialist histopathology practice with a special interest in uropathology and prostate cancer, Chairman of Swedish biotechnology

company Cavidi AB, and non-executive director of GBS Venture Partners Pty Ltd. Around the time when PCFA was considering establishing a more structured Research program, John had only just founded a boutique histopathology practice with two pathologists, and who as a result had undertaken significant research into prostate cancer. He was the perfect candidate to take up the job.

“In 2006, I was approached by Graeme Johnson and Prof. Anthony Costello – then the Chair and a non-executive director of the PCFA, respectively – about the possibility of establishing a more structured research program for the PCFA, which I would chair, says John.

Preparations for the establishment of this national initiative started back in 2003, and as a result of generous grants from Movember and its own fundraising, PCFA began to accumulate significant funds that enabled the initiation of a research program underpinned by a research committee.

Some highly significant grants were allocated but the program suffered from lack of overall goals or specific priorities, guidelines for submission of applications, a schedule for applications and announcements of successful applications, and a rigorous and transparent review process.

The first logical step towards establishing PCFA’s Research Program was to survey current prostate cancer research in Australia. This survey showed that there were a significant number

of internationally-prominent senior scientists working in prostate cancer in Australia – part of Australia’s highlyregarded medical research community, but it also highlighted the deficiency in research activity and funding, both nationally and internationally”, recalls Professor Mills.

As a result, the Research Program established two flagship grant categories to breach these gaps, one that supported the transition of young scientists into independent researchers and one that awarded our senior researchers in the field.

Funding PCFA has provided to Australian prostate cancer research since 2006, with the support of major partners such as Movember, has significantly increased the total funding available to prostate cancer research by the NHMRC. The catalytic effects of PCFA grants are shown in the successes that our Young Investigator grantees have achieved in becoming fully independent with their own NHMRC funding, and in the successes of our Concept grantees that are now actively engaged in prostate cancer research, again with independent NHMRC funding.

PCFA’s Research Program is now into its eighth year of running. And what a time it has been! Under John’s leadership. in partnership with Movember, the program has funded 152 projects nationwide to a total value of approximately $34 million.

John remains a distinguished nonexecutive Director on our National Board.

It was a tremendous “high” for me to be allowed to establish a program to fund prostate cancer research for PCFA, especially a program that had enthusiastic support from the PCFA Board, the Research Advisory Committee and the research community generally. And seeing the impact that Movember & PCFA funding had on the careers of young and established scientists - as well as on their research achievements - was very, very gratifying. The only negative was not having enough money to fund all of the eligible grant applications we received. I am looking forward to watching the Research Program achieving much more in the future.

05

AWARENESS

PCFA Ambassador Program Update The Ambassador Speaker program is a community based program delivered

by PCFA volunteers in a variety of different contexts such as in workplaces and in community centres.

It aims to: n Raise awareness in men and their families about prostate cancer n Encourage men to engage with their general practitioners around health issues n Deliver timely and evidence-based information about prostate cancer and issues related to prostate cancer

T

he Ambassador program has recently been revised and a national program of training has been rolled out

by PCFA throughout this year, the most recent held in Adelaide.

Thirteen Ambassadors, a mix of both new and returning speakers, recently gathered in Adelaide for a weekend of

RURAL EDUCATION ROADSHOW

Attendees of the Adelaide Training, held Aug 24-25th at the Rydges South Park Adelaide.

Ambassador training over August 2425th, 2013.

Over the course of the two-day event, participants brushed up on their public speaking skills, practised presenting the PCFA presentations, and learned how they could share parts of their personal experience with prostate cancer to motivate and inspire their audience.

A strong sense of camaraderie also developed, with participants learning from and mentoring one another.

Ambassador Malcolm Porter, of Mount Gambier, SA, noted, “What I learnt from other participants enabled me to have a greater understanding of how lives and families are affected in so many different ways by this disease.

The training weekend provided us with the confidence to ‘go to the masses’ with a story to tell in our own words, but with the assistance of a framework and some tools in the slide presentations.”

The Rural Education Roadshow has been in full swing since the pilot sessions in March held at Port Pirie SA. The Roadshow has now visited six States and Territories across Australia with further Roadshows planned for later this year and into 2014.

L-R: Arthur Kelly, Geoff Lester, Dr Antonio Vega Vega, Judy Cornick and Dr Charles Lin

As training events have now been held in each state and territory, the Ambassadors are looking forward to spreading the message of prostate cancer awareness in their communities.

In total, over 90 Ambassadors attended the trainings throughout 2013, representing rural and urban areas across Australia.

Within the past few months, Ambassadors have presented at a wide range of locations, including rugby and golf clubs, rotary clubs, city councils, military bases and manufacturing and mining companies. With International Prostate Cancer Awareness Month in September coming to a close, and the upcoming Movember season, now is a great time to host an Ambassador at your club or workplace to discuss the importance of prostate cancer awareness.

To host an Ambassador at your workplace or organisation, please contact ambassadors@pcfa.org.au.

F

eatured in this edition of Prostate News is the Roadshow team visiting sites in Queensland. Rockhampton Urologist Dr Antonio Vega Vega, Brisbane based Medical Oncologist Dr Charles Lin and Rockhampton based Cancer Care Coordinator Judy Cornick delivered the education sessions in Emerald and Gladstone on August 12 & 13.

Emerald and Gladstone are located in Central Queensland with Rockhampton acting as the regional hub for many of the specialist health services in the area.

The team visited Emerald first up and the sessions were well attended and well received by both community

Movember is back!

Movember is back and in 2013 Mo Bros and Mo Sistas are taking to the streets, inspiring change, motivating others to join the good fight. Sign up at movember. com and let the world know Generation Moustache is here. Mo’s stand united for one thing - change. And that is to change the face of men’s health.

Movember’s Chief Operating Officer Jason Hincks discusses how the Movember movement is changing the face of men’s health: “I have no doubt that people thought they were crazy, 30 guys wearing every conceivable variation of the Mo during the first Movember back in 2003.

But here we are eleven years later, humbled by the enormous support shown by the Movember community worldwide. Last year in Australia alone, Mo Bros and Mo Sistas united to raise an incredible $29.1 million and on a members and the health professionals attending; with a number of robust discussions particularly around accessing services and streamlining patient follow up from Emerald.

The following day the team took to the road and made the five hour journey to Gladstone. Like the sessions in Emerald, Gladstone was well attended by members of the community and had a great turn out at the evening health professional’s session. It was a pleasure to see so many enthusiastic health professionals in one space, contributing to robust conversations about management options for patients in the Gladstone area.

global level, a record breaking $141.5 million all thanks to growing Mo’s and having fun. But how does this help men’s health? Each selfless and generous man who signs up to donate his face for the 30 days of November effectively becomes a walking, talking billboard for men’s health. Through their growing efforts they raise awareness of the often-ignored issues of men’s health, by prompting conversations wherever they go. Never underestimate the power of the moustache — through positive engagement an estimated 2.72 billion conversations were sparked about Movember and men’s health during the 2012 campaign, both online and faceto-face.”

About Movember Movember supports world-class men’s health programs that combat prostate and testicular cancer and mental health challenges. These programs, directed by the Movember Foundation, are focused on awareness and education, living with and beyond cancer, staying mentally healthy, living with and beyond mental illness and research to achieve our vision of an everlasting impact on the face of men’s health.

It is great to see the effect the Roadshow is having in starting conversations between specialists and local health professionals, which in turn will help assist prostate cancer patients into the future.

Thank you to those who turned out to these sessions and our hard working Support Group leader Geoff Lester and QLD Chapter Councillor Arthur Kelly for their assistance in spreading the message on the ground in Gladstone.

A huge thank you must also go out to the three specialists, Dr Vega Vega, Dr Lin and Judy Cornick for giving up two days of their time to make themselves available to deliver the education at

Prostate Cancer Programs The Movember community’s hairy efforts have funded prostate cancer programs such as; n Prostate Cancer Specialist Nurses Program – national pilot program which recently attracted additional $7 million from the Federal Government. n Movember Revolutionary Team Awards – supporting multiinstitutional teams that have the potential to transform and revolutionise the clinical management of prostate cancer. n Clinical trial by Exercise Scientist Professor Daniel Galvão of Edith Cowan University in Western Australia, linking the impact of muscle loss and the benefits of exercise for prostate cancer patients.

Crank up the volume, make some noise and join us.

Grow or support a Mo in 2013.

Sign up at movember.com

these sessions. Without their support and the time provided by them and all the other specialists involved in the Roadshow program these sessions wouldn’t be possible.

WATCH THIS SPACE for more updates on the Roadshow program.

07

SUPPORT

New Resources for Gay & Bisexual Men with Prostate Cancer As readers of Prostate News will know, PCFA is growing and strengthening the support network through the Supporting men with prostate cancer through evidencebased resources and support project, which is a Cancer Australia initiative funded by the Australian Government.

Since the project started in September 2011 we have established 46 new support groups and held our first ever support group leader national training conference.

A

s part of this initiative, and in partnership with US organisation Malecare (www.malecare.org), we are establishing support groups specifically for gay men. Research conducted on behalf of PCFA by Professor Gary Dowsett and his team at La Trobe University’s Australian Research Centre in Sex, Society and Health confirmed what gay and bisexual men already know, which is that they are currently invisible in most prostate cancer educational resources, and that gay and bisexual men have specific support needs. The differences in support needs stem from the differences between gay and straight men when it comes to intimate relationships and social networks. This research will shortly be published in a new monograph entitled Prostate Cancer Information Needs of Australian Gay and Bisexual Men.

We set out to redress the situation in two ways. First, we decided to help establish gay and bisexual men’s prostate cancer support groups in every capital city in Australia. The first two groups were established in Sydney (in partnership with Greg Millan of Men’s Health Services) and Melbourne (in partnership with Cancer Council Victoria). With Greg’s assistance we have subsequently established groups in Brisbane, Adelaide and Perth, with Darwin and Hobart to follow next.

Secondly, we have developed a new resource kit comprising four booklets covering diagnosis, treatment, side effects and wellbeing specifically for gay and bisexual men. The resources have been reviewed by health professionals and members of the gay prostate cancer community. We are thrilled that

the booklets feature photography of members of our gay support groups.

The new kit will be launched towards the end of 2013.

PCFA’s Gay and Bisexual Men’s Prostate Cancer Initiative is part of a broader strategy to engage with the diverse communities that make up modern Australia. This includes translating key resources into five languages – Arabic, Chinese, Greek, Italian and Vietnamese and a flip chart for Aboriginal and Torres Strait Islander men.

One of the best things I have seen come from our support group is the comradeship that has developed between many of our members.

Richard Harry and Garth Wooton Limestone Coast Support Group

Q

What was it that attracted you to be involved in a prostate group?

A

In the early days, there was no prostate support group in our area and the only way to get information was to go back to the specialist – In the South East of SA we mostly had visiting specialists and hence there would often be a delay between each visit. Because of this I thought to myself that there needs to be an additional avenue for gaining factual information and a way to better care for men, partners and their families. The attraction of a support group for me was a way that people could be further supported, share with each other, and access evidence based information. So together with the help from the Adelaide Action Group (a group of dedicated people who help spread the word on prostate cancer awareness and help set up new support groups) the SA and NT prostate cancer governing council (known as the Central Chapter Council) and the local Mount Gambier Rotary Club the Limestone Coast PC Support Group

was founded. The group is now well established and we are sharing factual information to men diagnosed with Prostrate Cancer along with being there to “support” them through their journey.

Q

How does your group support men and families who have been affected by Prostate Cancer?

A

The Limestone Coast Support Group believes that “Support” can cover many aspects; from just being a place where people can talk to others who are going or have gone through similar, assist with evidence based information, or visiting people when things are not going well. Our support group is a firm believer that it is not only the male with Prostate Cancer that requires assistance but the often forgotten partner. One of the best things I have seen come from our support group is the comradeship that has developed between many of our members.

Q

What do you consider to have been the greatest accomplishments for your group?

A

We have had many small and large accomplishments over the years but I would say that the biggest achievement that our group has had is the development of friendship and genuine caring shown to people within our group. Our members have really valued the support and comfort that the group has given them.

Q

What would you like to see achieved in the next two years by the national network of PCFA affiliated groups?

A

It would be great for regional and country groups to have local access to prostate cancer nurses. This would mean not having to travel to capital cities where the nurses are at present and where the majority of urologists and other specialists are already situated.

9

HEALTH PROGRAMS & NURSING

One Year On – The Prostate Cancer Specialist Nursing Service In May 2013, PCFA launched its national Prostate Cancer Specialist Nursing Service.The Movember Foundation generously contributed $3.6 million to secure the program and recruit its first nurses. he nurses are located in all States T and Territories in selected hospitals across Australia and provide essential clinical and supportive care to men and their families who are affected by prostate cancer.

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.”

In the first year of service PCFA are proud to report that the service delivered over 6000 contacts with patients involving a total of 1888 men affected by this disease. The nurses are providing education, information and support, as well as proving to be a vital link to the prostate cancer multidisciplinary team.

Following the announcement that cancer funding was a priority for the

2013-2014 Federal Budget, PCFA was delighted that $7 million was allocated to the Prostate Cancer Specialist Nursing Program.

“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 Julie Sykes.

PCFA is currently working with the Department of Health to finalise the process for the recruitment of the additional 13 nurses and hopes to be making an announcement to the community soon.

For further information about the Prostate Cancer Specialist Nursing Service or to see which hospitals are hosting specialist nurses, visit www. prostate.org.au or call 1800 22 00 99.

Prostate Cancer: The Next Generation

I

n August the results of PCFA’s 11th annual community attitudes survey were published in a report entitled Prostate Cancer: The Next Generation and launched at The Sydney Museum with the support of Bayer. The research was conducted in March and April 2013.

Previously, our community attitudes survey focused on men aged 40 to 74, largely because less than 3% of prostate cancer diagnoses occur in men younger than 50. This year we focused on the next generation - men aged 18 to 50.

We found that younger men clearly see prostate cancer as an important male health issue alongside obesity and heart disease. They also clearly believe that community awareness of prostate cancer is increasing with 56% of participants saying it is “rising a lot” or “rising a little”,

Barry Collins Internship As a recipient of the Barry Collins Internship, Kim Mackley, a Practice Nurse from Ballarat,Victoria earlier this year, took the opportunity to spend time working with the Melbourne based Practice Nurses at Australian Urology Associates and private practice nurse, Helen Crowe.

D

uring the visit to Australia Urology Associates, Kim spent time observing various patient education sessions, specifically pre and post operative education of patients undergoing radical prostatectomy surgery, as well as education sessions with patients about managing the side effects of treatment. The nursing although many are unable to identify the factors which have led to this view.

However, the increase in community awareness has not led to a corresponding increase in personal awareness. The level of self-reported knowledge of prostate cancer is significantly lower than in the group of men aged 40 to 74 who participated in PCFA’s 2012 Community Attitudes Survey. Forty-one per cent (41%) of participants said they know “a lot” or “a little” about prostate cancer compared to 63% of men aged 40 to 74 in the 2012 survey. Furthermore, only 12% of participants saying they feel more informed about prostate cancer over the last 12 months.

Clearly, more work must be done to educate men under age 50 about prostate cancer. They may not yet be at serious risk of developing the disease,

appointments covered catheter care, wound management, post operative expectations and possible complications of the surgery. Kim was also able to attend a physiotherapy session, which involved teaching pelvic floor exercises.

Observing these sessions was reported as extremely valuable.

“The information was delivered verbally and the patient given written information to take home which supported the verbal presentation. The verbal information presented to patients was extremely consistent. The printed information given to patients is written in easy to understand language and reiterates the oral education session”.

Kim reported.

Kim also spent time with Helen Crowe, who is a Nurse Practitioner with a special interest in prostate cancer care.

“During this time I attended patient appointments with Helen and also but it is important that men develop a level of awareness and understanding before they reach their mid-forties.

This survey also marked the first time we have asked participants about their sexual orientation. We were surprised that more than 13% of respondents identified as being gay or bisexual, or did not identify as being heterosexual. The absence of information about sexual orientation in much of prostate cancer research means that the experiences of gay and bisexual men with prostate cancer are poorly understood. It is therefore important, and exciting, that we were able to provide a meaningful insight into the experiences of this group of men for whom prostate cancer is a significant health issue.

Gay and bisexual men who participated in the survey reported that they experience more significant health

had the opportunity to watch minor urological surgery at the Epworth Hospital. Being able to observe such experienced professionals care for patients and their families at different stages of their cancer journey has provided a great deal of insight.

Of particular interest to me was the area of rehabilitation of both the pelvic floor muscles and erectile function following radical prostatectomy. I was able to observe a range of patient education sessions regarding the full spectrum of pre and post operative care of radical prostatectomy, including continence management and erectile dysfunction.” Kim added.

Kim summarised her experience by saying “I am very grateful for this learning experience and am looking forward to using the information gained to improve the care of prostate cancer patients in our regional area”. issues than the heterosexually identified participants. Consistent with existing research findings, the gay and bisexual participants also reported a higher incidence of depression and anxiety. This is of concern given these mental health issues are likely to be experienced by men with prostate cancer in general.

In terms of support, the support network utilised by gay and bisexual participants is different to that of heterosexual men, for they are more likely to draw support from their friends. This highlights the importance of non-family members as significant members of gay and bisexual men’s support network, and challenges the notion that a family member or partner is the person’s main support.

To read the full report, visit the PCFA website www.pcfa.org.au

11

FUNDRAISING

Turning Up the Heat on Prostate Cancer The Big Aussie Barbie campaign kicked off on the 20th August this year with the national launch being held at Customs House in Sydney followed by State launches in Melbourne, Brisbane, Perth and Adelaide.

F

ronted by this year’s celebrity Ambassador, former Australian Test Cricketer, Matthew Hayden the national launch led the recruitment drive for community barbecues around the country but it also played an important role in educating the community on the scale of the prostate cancer problem.

Perhaps one of the most staggering statistics about prostate cancer is that it kills more men than breast cancer kills women. These stats were laid down in an engaging artwork at each of the launch events with the general public attending the launches encouraged to put their “blue” thumbprint on the canvas in support of all men and their families impacted by the disease.

The canvases were a talking point in each state and really drove home the importance of hosting a Big Aussie Barbie and fundraising to support prostate cancer research, awareness and education campaigns as well as resources and support for men and their families.

We also had a bit of fun with launches, this year engaging a film crew to ask passers by “if they could invite 2 men to a BBQ who would they be and why”.

The footage we collated from this will be used over various elements of the BAB in 2014.

We had great volunteer support with staff from from major sponsor Commonwealth Bank and PCFA Corporate partner, Bayer supporting the launch events. Matthew Hayden was interviewed throughout the launches creating interest for the general public.

2,000 BBQ mini tongs were handed out together with Selly’s BBQ wipes to the

general public and McCormick handed out a range of BBQ spices.

Here are some of the highlights from the state launch activities: Adelaide Launch BBQ month was launched in South Australia in a unique fashion – at the Metropolitan Fire Service Headquarters, with an outside broadcast by Radio 891ABC Adelaide. High profile South Australian personalities Les Burdett with Grant Burge leant their considerable profiles to the cause, helping recruit thousands of supporters to the campaign. The morning kicked off with a BBQ hosted and cooked by volunteers, firemen from the United Fire-fighters Union, chef Camillo from Assaggio and the Mushroom Growers Association.

Donations came from Barossa Fine Foods, Bakers Delight and Schweppes.

Then Ian Henschke spent two hours live radio time interviewing survivors, Les and Grant and firefighter Neil Mangelsdorf, as well as PCFA-SA Board Member and Urologist Peter Sutherland.

Perth MC Tod Johnston was fantastic at the Perth launch and really got the message out there about our campaign and prostate cancer.

Four BBQ stations were set up with each being manned by PCFA corporate supporters Apache Energy, Atteris, SKM and Commonwealth Bank. The teams cooked and sold 1100 sausages.

Mike Hussey, former Australian Cricketer, attended signing 100 miniature cricket bats that were sold for $20 each.

Brisbane Matthew Hayden was a hit in his home town meeting and greeting the general public whilst spruiking the importance of men’s health and signing up to hold a Big Aussie Barbie in September.

The launch event overtook the Queen St Mall with Commonwealth Bank staff taking the lead in recruiting barbie hosts and handing out information about PCFA. Melbourne Federation Square hosted Melbourne’s Barbie launch this year with AFL legend David Parkin lending his profile and personal experience with prostate cancer to kick of barbecue season.

Commonwealth Bank CBA staff came together with their local communities to host BBQs to raise funds and awareness for prostate cancer.

Corporate centres held large cook-offs where departments competed to raise the most amount of money for the cause, while selling PCFA merchandise to boost their fundraising efforts.

At the time of publishing the Big Aussie Barbie campaign was well on its way to achieving its target of $1million in fundraising for this year. Stay tuned to the next edition of Prostate News for an update on how much the campaign raised.

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Silver Foil, TR285

Gold Foil, BA274

Red Foil, FE161

Charming Trees

s

Glowing Bauble

as Festive Christm

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Stylish Bauble

Shooting Star

Gold Foil, TR319

Gold Foil, BA262

Silver Foil, FE376

Gold Foil, BA325

Silver Foil, ST028

s

Magnificent

Sparkling Bauble

Ribbon Tree

Exquisite Dove

Baubles

Christmas Sunset FE222

Silver Foil, BA306

Gold Foil, TR270

Gold Foil, DO357

Gold Foil, BA317

Helpre Cu 10

Twinkling Stars

Majestic Kings

Gorgeous Tree

s

Classy Bauble

2014 Wishes

Christmas is fast approaching and many of you will have already started purchasing gifts and cards for friends and family in the lead up to the Festive Season. PCFA is very fortunate to be the beneficiary of two Christmas campaigns that will cover all your Christmas gift needs.

Silver Foil, ST383

Gold Foil, RE377

Gold Foil, TR114

Silver Foil, BA337

find a

Gold Foil, FE308

Corporate Cards & Gifts

WE OFFER YOU

F OF

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white or black and in full colour and logos printed service Your message Friendly, caring back guarantee only 50 cards 100% money Minimum order ed lia wide envelopes includ Delivery Austra Peel and seal Unlimited proofs

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Charity Greeting Cards has a range of cards available for sale for companies wishing to send cards to their clients. Forty cents from every card purchased will be donated back to PCFA towards our vital work in supporting men diagnosed with prostate cancer and their families. Charity Greeting cards have a large range of cards available for your corporate needs and can print your message and logo in full colour or black and white. To view the range of cards and find out more on how you can order your cards through Charity Greeting Cards visit www. christmascards4charity.com.au/pcfa Charity Greeting Cards have this year introduced Christmas Hampers to their range. The range features something for all budgets and 10% of the hamper cost comes back to PCFA as a donation. To view the range of hampers available and to fund out more on how you can order your hampers visit charity www. charityhampers.com.au

Individual cards Our friends at Simson Cards also continue their wonderful support of PCFA with a range of cards available through newsagencies and retail outlets. Watch out for cards in all Myer and David Jones department stores, 700 Postshops across Australia, all Wildcarded Gift Stores, Kenny’s Cardiology and 1200 newsagencies.

Simson has donated over $130,000 to PCFA and has committed to the greater of $25,000 or 8% of the wholesale value of the cards.

WANT TO REACH THE PEAK IN 2014?

CLIMB FOR PCFA Fancy taking on a challenge of a lifetime or know someone who would? We have just launched the PCFA Kilimanjaro Trek 2014 and we would like to invite you, your friends and family to sign up!

From 6th – 17th October 2014, 24 trekkers will be climbing the iconic Kilimanjaro and in the lead up to the trek raising vital funds to support PCFA research and awareness programs.

This is a truly exciting challenge that will not only change your life but by raising Places will fill up fast so don’t miss out! funds you will be helping change the For more information please contact lives of men and their families living with kathryn.jones@pcfa.org.au or call 02 9438 7040 prostate cancer.

13

OPINION

The Melbourne Consensus Statement on Prostate Cancer A consensus view on the early detection of prostate cancer, led by experts at the Prostate Cancer World Congress, Melbourne, 7–10th August 2013

R

ecent guideline statements and recommendations have led to further confusion and controversy regarding the use of Prostate Specific Antigen (PSA) testing for the early detection of prostate cancer. Despite high-level evidence for the use of PSA testing as a screening tool, and also for its role as a predictor of future risk, the US Preventive Services Taskforce (USPSTF) has called for PSA testing to be abandoned completely, and many men are therefore not given the opportunity for shared decisionmaking. Other groups such as the American Urological Association, National Comprehensive Cancer Network, and European Association of Urology support a role for PSA screening but with somewhat conflicting recommendations. The majority of guideline statements have endorsed the role of shared decision-making for men considering PSA testing.

To address these somewhat conflicting and confusing positions, a group of leading prostate cancer experts from around the world came together at the 2013 Prostate Cancer World Congress in Melbourne and generated the following set of consensus statements regarding the use of PSA testing. The goal of these statements is to bring some clarity to the confusion that exists with existing guidelines, and to present reasonable and rational guidance for the early detection of prostate cancer today.

Consensus Statement 1: For men aged 50–69, level 1 evidence demonstrates that PSA testing reduces prostate cancer-specific mortality and the incidence of metastatic prostate cancer. In the European Randomized Study of Screening for Prostate Cancer (ERSPC), screening reduced metastatic disease and prostate cancer-specific mortality by up to 30% and 21% respectively in the intent-totreat analysis, with a greater reduction after adjustment for noncompliance and contamination. In addition, the Goteborg randomized populationbased randomized trial showed a reduction in metastatic disease and prostate cancer mortality with screening starting at age 50. The degree of overdiagnosis and over-treatment reduces considerably with longer follow-up, such that the numbers needed to screen and numbers needed to diagnose compare very favourably with screening for breast cancer. While routine populationbased screening is not recommended, healthy, well-informed men in this age group should be fully counselled about the positive and negative aspects of PSA testing to reduce their risk of metastases and death. This should be part of a shared decision-making process.

Consensus Statement 2: Prostate cancer diagnosis must be uncoupled from prostate cancer intervention. Although screening is essential to diagnose high-risk cases within the window of curability, it is clear that many men with low-risk prostate cancer do not need aggressive treatment. Active surveillance protocols have been developed and have been shown to be a reasonable

and safe option for many men with low-volume, low-risk prostate cancer.

While it is accepted that active surveillance does not address the issue of over-diagnosis, it does provide a vehicle to avoid excessive intervention.

Active surveillance strategies need standardisation and validation internationally to reassure patients and clinicians that this is a safe strategy.

Consensus Statement 3: PSA testing should not be considered on its own, but rather as part of a multivariable approach to early prostate cancer detection. PSA is a weak predictor of current risk and additional variables such as digital rectal examination, prostate volume, family history, ethnicity, risk prediction models, and new tools such as the phi test, can help to better risk stratify men. Prostate cancer risk calculators such as those generated from the ERSPC ROTTERDAM (www. prostatecancer-riskcalculator.com), the Prostate Cancer Prevention Trial (PCPT) (http://deb.uthscsa.edu/URORiskCalc/ Pages/uroriskcalc.jsp), and from Canada (prostaterisk.ca), are useful tools to help men understand the risk of prostate cancer in these populations. Further developments in the area of biomarkers, as well as improvements in imaging will continue to improve risk stratification, with potential for reduction in overdiagnosis and over-treatment of lower risk disease.

Consensus Statement 4: Baseline PSA testing for men in their 40s is useful for predicting the future risk of prostate cancer.

Although these men were not included in the two main randomised trials, there is strong evidence that this is a group of men who may benefit from the use of PSA testing as a baseline to aid risk stratification for their likely future risk for developing prostate cancer, including clinically significant prostate cancer.

Studies have shown the value of PSA testing in this cohort for predicting the increased likelihood of developing prostate cancer 25 years later for men whose baseline PSA is in the highest centiles above the median. For example, those men with a PSA below the median could be spared regular PSA testing as their future risk of developing prostate cancer is comparatively low, whereas those with a PSA above the median are at considerably higher risk and need closer surveillance. The median PSA for men aged 40–49 ranges from 0.5–0.7 ng/ml, with the 75th percentile ranging from 0.7–0.9ng/ ml. The higher above the median, the greater the risk of later developing lifethreatening disease. We recommend that a baseline PSA in the 40s has value for risk stratification and this option should be discussed with men in this age group as part of a shared decisionmaking process.

Consensus Statement 5: Older men in good health with over ten year life expectancy should not be denied PSA testing on the basis of their age. Men should be assessed on an individual basis rather than applying an arbitrary chronological age beyond which testing should not occur. As life expectancy improves in many countries around the world (men aged 70 in Australia have a 15 year life expectancy), a small proportion of older men may benefit from an early diagnosis of more aggressive forms of localised prostate cancer, just as it is clear that men with many competing comorbidities and less aggressive forms of prostate cancer are unlikely to benefit irrespective of age. Likewise, a man in his 70s who has had a stable PSA at or below the median for a number of years previously is at low risk of developing a threatening prostate cancer and regular PSA screening should be discouraged.

An important goal when considering early detection of prostate cancer today is to maintain the gains that have been made in survival over the past thirty years since the introduction of PSA testing, while minimising the harms associated with over-diagnosis and over-treatment. This is already happening in Australia where over 40% of patients with low-risk prostate cancer are managed with surveillance or watchful waiting, and in Sweden where 59% of very low risk patients are on active surveillance. This is also reflected in current guidelines from the EAU, NCCN and other expert bodies, and in a comment from AUA Guideline author Dr Bal Carter in the BJU International.

Abandonment of PSA testing as recommended by the USPSTF, would lead to a large increase in men presenting with advanced prostate cancer and a reversal of the gains made in prostate cancer mortality over the past three decades.

However, any discussion about surveillance is predicated on having a diagnosis of early prostate cancer in the first instance. As Dr Joseph Smith editorialised in the Journal of Urology following the publication of the ERSPC and PLCO trials, “treatment or non-treatment decisions can be made once a cancer is found, but not knowing about it in the first place surely burns bridges”. A key strategy therefore is to continue to offer well-informed men the opportunity to be diagnosed early, while minimizing harms by avoiding intervention in those men at low risk of disease progression. This consensus statement provides some guidance to help achieve these goals.

Associate Professor Declan G Murphy Urologist & Director of Robotic Surgery, Peter MacCallum Cancer Centre, Melbourne Director of Outcomes Research, Australian Prostate Cancer Research Centre, Epworth Richmond Hospital, Melbourne

15

PARTNERSHIPS

Prostate Cancer Foundation of Australia and Tennis Australia Fundraising Partnership We are excited to announce we have been chosen along with National Breast Cancer Foundation (NBCF) as the charities which will benefit from the all-new AO Blitz by Tennis Australia.

“We are pleased and proud to be partnering with Tennis Australia and National Breast Cancer Foundation on the AO Blitz. A balanced diet, exercise and reducing alcohol consumption reduces the risk of cancer. What better way to exercise than playing tennis with family and friends.” said Dr Anthony Lowe recently at the launch of the campaign in Noosa.

What is the AO Blitz?

The AO Blitz is the largest tennis participation drive in the history of Australian sport. An initiative of Tennis Australia, the AO Blitz is a national competition that allows people who

play tennis – and those who have never picked up a racquet – the chance to win major prizes and raise funds for PCFA and NBCF. From October, fundraisers are encouraged to take on tennis-themed challenges to earn points and win prizes. At the end of the AO Blitz, the towns with the most points will be represented on court at the Australian Open 2014 by one of the world’s leading players.

To help share the excitement AO Blitz will be holding Activation Days in every state and territory in Australia. At each of these days’ people will donate to

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

play on mini courts, take part in cardio tennis and hold the Australian Open Trophies plus much more!

How you can get involved If you are a school or club you can take on the AO Blitz fundraising challenge. Visit AOBlitz.com.au for more information and to sign up.

If you would like to be a PCFA volunteer at an AO Blitz Activation Day please check out the PCFA website and the Fundraise through Tennis page for all the locations, dates and times.