PROSTATENEWS reducing the impact of prostate cancer
ISSUE 50/JULY 2012
Fresh
FOCUS on evidence-based care & awareness
SPECIALIST NURSING
SERVICE LAUNCHES
Let’s turn up the heat this September
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) Associate Professor Phillip Stricker (Education Sub-Committee Chairman) National Support Groups David Gregory (Chairman) Marketing & Fundraising Steve Callister (Chairman) Rotary John Palmer State Chairmen Tony Sonneveld OAM (NSW/ACT) Des Grogan (VIC/TAS) Roz Baker (WA) Professor Judith Clements (QLD) Professor Villis Marshall AC (SA/NT)
> CEO Message I am very pleased to announce the launch of a new national advertising campaign that will promote the availability and benefits of PCFA’s information, educational resources and affiliated support groups. The main aim of the campaign will be to encourage men and their families affected by prostate cancer to take action and get in touch with their local support group. Starting at the end of July, and running for three years, the campaign will feature A4 posters and take-away cards in public conveniences right across Australia. As part of the national campaign, the locations around 20 support groups will be more heavily targeted for a trial period to see if this is an effective way to change men’s help seeking behaviours. The 20 support groups have been chosen at random to cover a cross section of urban, suburban and rural locations.
We have set up a dedicated 1300 number for the campaign and phones will be manned by experienced volunteers drawn from PCFA’s support group network. The aim is to ensure that everyone who calls the 1300 number speaks directly to someone who understands from firsthand experience the issues faced by men and their families affected by prostate cancer. The volunteers will put callers in touch with the local support group. We will be carefully evaluating the success of the campaign from focus group testing the advertisements, through to analysis of call volumes, nature of enquiries and ultimately attendance at support groups. The evaluation will assist us in refining a model that can be used more broadly in future. The national advertising campaign is funded by the Australian Government through Cancer Australia.
Dr Anthony Lowe, Chief Executive Officer, PCFA
Contents CEO MESSAGE
page 02
AROUND THE COUNTRY
page 03
RESEARCH
page 04
AWARENESS
page 06
SUPPORT
page 08
NURSING
page 10
FUNDRAISING
page 12
OPINION
page 14
PARTNERSHIPS
page 16
with man from Pirtek Anne & Rod Chap use Ho illi rib Kir at Dr Anthony Lowe
Around the country Gold Coast community rides for PCFA
THE GOOD GUYS INSERT GOLF CHALLENGE HEADLINE HERE
South Australia: The Good Guys Edis cus plenty sum de raisedditisimetur, over $1,000 and of nest res res mint volores pel awareness for PCFA recently at idis doloreGuys prerit aut explique The Good Pro-Am Golf to volum quiandam ius volor Challenge, part of the PGA Legends alite venis Tour, held at vent. Mt Osmond Golf Club. Acest, offici quias happenings: eaturibus Other South Australia nihit ut ommodi qui acium • S am Newman’s celebrity status esciunt od untur moditatentia helped raise over $8,000 at a gala dio consequ Qui Hotel dinner at theaeptur? Port Lincoln aborpores Harc volecatium •quam, D avidquature and Pam ptaquisinit Sandoe made a special trip to visit the Limestone Coast Support Group where they collected a $10,000 cheque from the Coonawarra Vigernons Association, the result of their annual Barrel Auction
Queensland: Gold Coast residents helped raise over $6,000 for PCFA on Sunday 24 June when they jumped on their bikes to join in RideGC. A memorial ride held in honour of Gold Coast local Mike Stout who sadly died as a result of prostate cancer last year, RideGC is geared at encouraging the community to get active in the beautiful Gold Coast surrounds while raising funds and awareness for prostate cancer. The ride is part one of a six part, 12-month long campaign in support of PCFA.
KIRRIBILLI HOUSE THANK YOU NSW/ACT: PCFA was privileged to have use of the residence of the Prime Minister for the annual PCFA NSW and ACT thank you event on March 14. The residence provided a spectacular setting for this annual event where PCFA recognises and thanks those who have played a significant role in supporting its work. Thanks was
offered to major corporate supporters including Commonwealth Bank, Pirtek and Farmoz. Community fundraisers were acknowledged for the great role they’ve played, some with outstanding results like the $180,000 raised by the Long Ride. Special mention was also made for the fantastic input of young people and schools.
FREMANTLE PHANTOMS SHOW THEIR SUPPORT Western Australia: The dedicated men of the Fremantle Phantoms once again showed their unyielding commitment to PCFA by holding a Life Members and Past Players luncheon on 20 May. The team sold blue headbands and wristbands on the day and many wore blue shoelaces in their boots as a show of support. Additionally, two raffles were held resulting in a total of $1,200 being raised for PCFA. Our sincere thanks goes to Kerri Wilkinson for her continued support and ongoing interest in PCFA.
03
RESEARCH
Improving evidence-based care The PCFA/National Health and Medical Research Council Partnership Project Grant launches the first ever randomised trial to test the effectiveness of clinical networks to lead changes in clinical practice in hospitals aimed at improving evidence-based care in Australia Prostate cancer is the most common cancer diagnosed in Australia and the second most common cause of cancer death in Australian males. A national strategy to improve prostate cancer services and thereby improve patients’ quality of life and survival recently identified the provision of evidence based care for “high risk” men with prostate cancer as a high priority. Compelling new evidence suggests we need to alter current practice by offering radiotherapy to high risk men with prostate cancer – but will clinicians change their practice?
This study will assess whether a clinician-led and tailored intervention in eleven hospitals within the NSW Agency for Clinical Innovation’s Urology Network (with urology multidisciplinary teams) increases evidence-based care for high risk patients after surgery. The study will identify reasons why the intervention did or did not result in greater referral to radiation oncology services. The results of this study will be of immediate use to PCFA to ensure men with high risk prostate cancer, initially treated with surgery, will more quickly receive appropriate
evidence-based cancer care. Clinical networks are increasingly being viewed as vehicles through which evidence-based care can be embedded into our healthcare system, but we still don’t know if the time and resources spent on networks result in better care. This study will take advantage of the strong clinical, consumer and policy support provided by Prostate Cancer Foundation of Australia and the Agency for Clinical Innovation’s Urology Network. This is the first ever randomised trial to test the effectiveness of clinical networks to lead changes in clinical practice in hospitals with high risk patients to improve evidence-based care in Australia.
PCFA would like to recognise the Movember Foundation as a key funder of its National Research Program
Associate Professor Mary Haines with Co-Investigator Dr David Smith and PhD Student Bea Brown (Sax Institute)
INVESTIGATORS & AFFILIATIONS INVOLVED • Associate Professor Mary Haines, Sax Institute and The University of Sydney • Professor Dianne O’Connell, Cancer Council NSW • Professor Jane Young, The University of Sydney • Dr David Smith, Cancer Council NSW • Dr Hunter Watt, formerly NSW Agency for Clinical Innovation
• Associate Professor Andrew Kneebone, Royal North Shore Hospital, Northern Clinical School, The University of Sydney • Dr Andrew Brooks, NSW Agency for Clinical Innovation and Westmead Hospital
Researcher chat: A/Prof Mary Haines Associate Professor Mary Haines from the Sax Institute and The University of Sydney talks to us about the importance of this groundbreaking project and how it will improve care for men with locally advanced prostate cancer
Q A
What is the ultimate goal of this project?
This is a practical applied research project that is focused on working with Urologists and their multidisciplinary teams in NSW hospitals to test ways to improve care for men with locally advanced prostate cancer.
Q A
Is there a need for changes in health practice delivery and why?
In general, when there is a need for change in health care it is for two main reasons. First, we know that there are differences in the quality of care people with cancer receive depending on where they get their care. Second, scientific breakthroughs regarding new or most effective therapies take too long to become part of routine care. To overcome this second barrier to high quality care, the evidence from the latest research is synthesised into clinical practice guidelines to provide busy clinicians with clear recommendations for practice. However, there remains a gap between research evidence and clinical practice because guideline recommendations are often not implemented effectively.
Q
This is a collaborative project. Who else is involved and who is carrying the study forward on a day to day basis?
A
The project is being undertaken by a team of researchers from the Sax Institute, Cancer
Council NSW and the University of Sydney in conjunction with specialist clinicians providing care for men with prostate cancer. A key aspect of the study is the strong link between the research team and the Urology Network of the NSW Agency for Clinical Innovation which aims to improve equity of access, promote high quality care and improve outcomes for NSW patients with urological conditions. On a day to day basis, the project is being led by Bea Brown, a Research Fellow at the Sax Institute who is undertaking a PhD focused on the study.
Q
Why is it important to conduct such projects in partnership with other funding organisations including the Government and a not for profit such as PCFA?
A
This type of project creates new partnerships among decision makers, policy makers, managers, clinicians and researchers, providing opportunities to work together to define research questions and undertake research. It also allows
shared interpretation of the findings to guide implementation so that they influence health and well-being through changes in the delivery, organisation, funding and access to health services.
Q A
Would the outcome benefit men currently living with prostate cancer and how?
The results of this study will be of immediate use to ensure men with high risk prostate cancer, initially treated with surgery, will more quickly receive appropriate evidence based cancer care.
Q A
How will the community know about the success of the project?
Dissemination tools to explain the implications of this study for consumers will be published on the PCFA website along with full details of the intervention.
05
AWARENESS
Rights-based health The Australian Commission on Safety and Quality in Health Care has developed a new charter aimed at helping consumers to know what to expect from their health care system The Australian Commission on Safety and Quality in Health Care developed this charter based on three key principles – access to health care; rights-based approach to health care; and acknowledgement of diversity with the aim of assisting health care consumers to know what to expect from their health system.
UPCOMING HEALTH DATES
The rights emphasised in the charter cover access, safety, respect, communication, participation, privacy and comment. It reminds consumers to access services to: • address their health care needs; receive professional, skilful and competent care; • r eceive acknowledgement of personal values, beliefs, culture, and views; • r eceive communication about their health care in a way they can understand; participate in decisions about their health care; have their personal health care information treated with privacy; and
• h ave the right to comment and/or complain and have their concerns addressed. It is important people with prostate cancer and their families are aware of their rights. Confusion about treatment choices need to be clarified; requests for further information need to be adhered to; and complex medical information needs to be provided in ways you can understand. Sometimes people feel uncomfortable reminding health care professionals of these entitlements however it is important for one’s own peace of mind to ensure you are treated with the best care possible and be treated with dignity and respect. People with prostate cancer often experience a natural loss of dignity due to the types of examinations, as well as some side effects of treatment. All the more reason why everyone needs to understand their rights and have some control in how they receive information and communications.
TOMORROW COUNTS LAUNCH Check out ‘Tomorrow Counts’, a new website – developed in partnership with PCFA – that aims to provide men with prostate cancer, and their friends and family, a forum to share personal experiences with the diesease and why tomorrow counts for them. Visit www.tomorrowcounts. com.au to share your journey and read stories of inspiration from 10 Australians who have beaten, or are living with, prostate cancer. The website and an accompanying book will be launched in Parliament House, Canberra and a campaign to raise awareness about prostate cancer will be rolled out Australia-wide throughout 2012 and 2013.
• July: Dry July for the MONTH of July www.dryjuly.com
• 26 August: Daffodil Day – Cancer Council Australia www.daffodilday.com.au
• 15-21 July: Wee Wee 2012 www.kidney.org
• 28 August-4 September: National Parkinson’s Awareness Week www.parkinsons.org.au
• 22-28 July: National Pain Week www.chronicpainaustralia.org • 18 August: Vietnam Veterans Day • 19-25 August: National Health Bones Week www.healthybones.com.au • 19-25 August: Hearing Awareness Week www.hearingawarenessweek.org.au
• September: International Prostate Cancer Awareness Month www.pcfa.org.au
Prostate cancer & the wider community PCFA’s National Manager of Awareness and Education, Margaret Bennett, considers the far-reaching impact of prostate cancer in our community and the importance of resources that meet diverse needs Rarely a day goes by without some media coverage in Australia about prostate cancer. Some of the stories are about people who have died and others about current debates. Behind each media story presented are individuals struggling to find information to help them manage their illness and understand the choices they need to make. There are family members also struggling with how best to cope and people who live alone with no support beyond neighbours or friends. It is important we remember the different life contexts of those diagnosed with prostate cancer. I was reminded of this recently at Fair Day held in Sydney when talking with a number of people affected by prostate cancer through the people they care about. Men who have sex with men talked about the impact of prostate cancer on their relationships and a young woman said “my dad has just been diagnosed and I need to know more about it”. When someone we know or care about is affected by a serious illness the impact can be shock and devastation for us, whether a partner or a friend, as well as the man diagnosed with prostate cancer. Some people have multiple experiences with prostate cancer through grandfathers, a father, uncles, brothers all being affected. Sometimes other family members and friends feel they cannot talk about their feelings and experience as the person who is living through prostate cancer is the focus.
Although all cancers affect couples and families, some of the side effects of treatment in prostate cancer can affect the ways people relate. As one person said recently, “prostate cancer is not a man’s disease it’s a couple’s” ... while other men have said “I have no-one who is there to support me as a single person”. At PCFA, we are committed to developing resources to address the diverse needs of our consumers and educate the general community and health professionals on ways to effectively support everyone who is impacted by prostate cancer – no matter what personal or family situation they have. To achieve this, our Awareness and Education team is currently reviewing existing resources and researching the best approach for the development of new resources with drafts due by December and the final comprehensive range to be completed by mid-2013. Margaret Bennett, National Manager of Awareness and Education, PCFA
PCFA is committed to developing resources that meet the diverse needs of consumers
07
SUPPORT
Surge of support: PCFA affiliated group network grows With the help of funding provided to PCFA by the Australian Government through Cancer Australia, PCFA’s affiliated group network is growing rapidly with an additional 90 new groups anticipated over the next two and a half years. Here we talk to PCFA’s National Manager of Support Groups, John Friedsam It gives me great pleasure to share with you that the network of PCFA Affiliated Groups is growing. Since the inception of the 3.9 million dollar funding provided to PCFA by the Australian Government through Cancer Australia in September 2011, PCFA’s group network has expanded from 110 to 127 Affiliated Groups. These seventeen new groups have all been created with the support of PCFA’s wonderful and dedicated Chapter Councillors, the Support Group and Outreach Team and through the hard work of the National
Support Groups Committee to the National Board. As mentioned in previous editions of Prostate News, part of our agreement with Cancer Australia is to grow the network of Affiliated Groups by 90 new groups by December 2014 – and we are off to a good start. Here, some of our Chapter Councillors and new group leaders share what their involvement means to them.
We are off to a good start in reaching our goal of 200 affiliated groups by 2014
John Friedsam, National Manager, Support Groups, PCFA
some words from our affiliated group network: “I started a group as a result of the lack of support available for men in our town when my husband was diagnosed nine years ago. It gives us both a good feeling to show others there is life after prostate cancer.”
“I believe it’s important to get the word out to men and their families in regional areas where there’s limited access to support and
Karen Rendell, Convenor Albany Prostate Cancer Support Group; WA Chapter Council, Deputy President
John Allen, Dubbo Prostate Cancer Support Group; NSW/ACT Chapter Council, Deputy Chairman
information”
“My wife and I noted the distress of many men in a similar position when I was diagnosed and wanted to provide a relaxed and safe forum for sharing of thoughts and experiences.” Roy and Helen Francis, Mornington Peninsula Prostate Support Group;VIC/Tas Chapter Councillors
“The support group acts as a buddy type system whereby men can connect with others going through a similar journey... an opportunity for them to talk about what they’re going through and be there for one another.” Daryl Hyland, Qld Chapter Councillor & Support Group Coordinator
Affiliated Group Snapshot PCFA is proud to have a passionate affiliated group network across the country dedicated to assisting those affected by prostate cancer. Here, we talk with Dr John Trollor, Chairman of the Bathurst Prostate Cancer Group, also recently appointed a NSW/ACT Chapter Councillor
right) Dr John Trollor (2nd from hurst with members of the Bat Prostate Cancer Group
Q
Hi John, thanks for making the time to talk with us. What was it that attracted you to becoming involved in a prostate cancer group?
A
My work as a Palliative Care doctor brought me into contact with many cancer patients, including prostate cancer, and I was instigator and co-founder of the Tamworth Group which was fostered initially by my Rotary club and several members. On retirement, I moved to Bathurst and felt compelled to join the group here as I see providing support to men diagnosed with prostate cancer, and their families as a worthwhile cause.
Q A
What kind of strategies do you use to recruit new members to the Bathurst Prostate Cancer Group? Some of the strategies we employ include media relations (we regularly contribute to the local paper and secure radio interviews), community events, individual approaches and working with health professionals (we have a close working relationship with the local Oncology unit). We ensure our meetings are well advertised and piggy back onto events such as Bunnings BBQ, Relay for Life and farmers markets. Additionally, we give frequent talks to groups in our area and if we hear about anyone with prostate cancer we contact them to offer support and information.
Q A
What do you consider have been the greatest accomplishments for the Bathurst Prostate Cancer Group?
Some of the group’s most significant accomplishments include: • Going from strength to strength over 12 years with meetings which are well attended, supportive, informative and fun •W ide community involvement and exposure • Regular public meetings with major speakers attracting large audiences • Outreach to neighbouring towns with a support group recently promoted in Lithgow • Support of out of town men and families by regular contact • Initiating the “Ties Around The Mount” event • Bob Slade, one of our co-founders, receiving the Max Gardner award • T he “Going away for treatment” folder for local men and families
Q A
What would you like to see achieved in the next two years by the national network of PCFA affiliated groups? • A strong unified voice as consumers on such matters as priorities for research, our views on “over diagnosis” and “over treatment” and the lack of national guidelines for the medical profession concerning prostate cancer • An independent online network for support groups for opinions, exchange of ideas and information on the sort of questions we have • More work on the support of rural and remote men and the Indigenous population • Better relationships with general practitioners and specialists via Divisions and Associations as well as individually • More Prostate Cancer Specialist Nurses in remote areas • A single resource of information for rural men looking to going to the city for consults or treatment addressing the consumer’s needs
09
letters&issues
NURSING
Specialist Nursing Service launches Many of the thousands of men diagnosed with prostate cancer each year will now have access to specialist nursing care through the entire cycle of treatment thanks to Australia’s first national Prostate Cancer Specialist Nursing Service, launched recently by PCFA. Here, we talk about the innovative new service with PCFA’s Director of Nursing, Julie Sykes
Q
Hi Julie, congratulations on the launch of the Prostate Cancer Specialist Nursing Service. How do you envisage the service will help men affected by prostate cancer?
A
The Prostate Cancer Specialist Nursing Service will offer men diagnosed with prostate cancer accessible specialist nursing care through the entire cycle of treatment – from immediately after diagnosis through to post treatment support. Each nurse will work with the patient’s medical team to provide ongoing support to diagnosed men and their families. Part of the Prostate Cancer Specialist Nurse’s role will be to assist patients in understanding their diagnosis and treatment plan, coordinating their care and access relevant services.
Q A
Where are the specialist nurses located and how are they being funded?
The new service will deliver 13 Specialist Nurses to metropolitan and regional hospitals in the Northern Territory, Queensland, New South Wales, Victoria, South Australia,Tasmania, Western Australia
specialist to t nurses seucial r c deliver care holistic and the ACT (see map, at right, for locations). Initially, the nurses are being funded by the Movember Foundation who is generously contributing up to $3.9 million to PCFA to secure the program and recruit its first nurses.
Q A
How are the nurses trained to be able to provide specialist care for prostate cancer patients?
Following the recent launch and induction training, PCFA is providing ongoing education and support to the nurses throughout this trial following a structured program. PCFA is also working alongside Queensland University of Technology to undertake a study to measure how effective this pilot program has been, and this will help determine the long term plans for the service.
Men diagnosed with prostate cancer now have access to a dedicated healthcare professional for every step in their journey PCFA would like to recognise the Movember Foundation as a key funder of its national Prostate Cancer Specialist Nursing Service
LOCATIONS of the first 13 specialist nurses: Royal Darwin Hospital, NT
Townsville Hospital, Qld
Mater Adult Hospital, Qld
Tamworth Regional Hospital, NSW Westmead Hospital, NSW Canberra Hospital, ACT Hollywood Private Hospital, WA
Royal Adelaide Hospital, SA
Bendigo Health, Vic
Latrobe Regional Hospital, Vic Austin Health, Vic
Launceston Hospital, Tas
The specialist nurses will help those affected by prostate cancer by: • Providing a point of contact and support for patients and carers •A ssisting patients to access services in their community both during and after treatment •P roviding reliable information about diagnosis and treatment plans •C o-ordinating care wherever a patient is in their cancer journey
Royal Hobart Hospital, Tas
Barry Collins Nursing Internship London visit Barry Collins Nursing Intern Deborah Stokes recently visited Guy’s and St Thomas’ hospitals in London where she investigated possibilities for improving our current service to patients and families The aim of my trip to the UK was to gain a comprehensive understanding of their current patient service practices with a view to adapting the most effective for improved service here. My investigation included attending nurse led clinics and group brachytherapy sessions as well as observing the advanced prostate cancer nurse role in both hospitals. The trip proved to be extremely worthwhile with three key initiatives established as a result of the visit, being:
•A new patient clinic: all of our new prostate cancer patients are now seen on one afternoon;
• T he practice of dictating a letter for the patient and their GP: an
improvement on the current system whereby the nurse dictates notes on the patients that are seen three months post treatment; and
• I ntroduction of brachytherapy
seminars: discussions are underway with our physics staff regarding the most efficient way to introduce these in our department I would like to extend my thanks to the UK nurses who were exceedingly helpful in sharing their time, knowledge and practices and also PCFA for the invaluable opportunity. Deborah Stokes, CNS William Buckland Radiotherapy Centre, Alfred Health, Melbourne
St Thomas NHS Trust, London (top) and Guy’s Hosptial (bottom)
11
FUNDRAISING
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GREAT FOOD, GREAT FUN, GREAT CAUSE The Barbie is one of the great Aussie icons. It celebrates all the good things about this country – the weather, the food and the people. It seems only natural to PCFA that it also celebrates the Aussie male and helps us raise money and awareness for prostate health. To reach this goal, PCFA is urging Australians to join the fight against prostate cancer this September
– International Prostate Cancer Awareness Month – by registering and hosting a BIG AUSSIE BARBIE. PCFA, with the generous support from major sponsor Commonwealth Bank, will officially launch the BIG AUSSIE BARBIE campaign on the 31 August in Sydney and will promote the campaign across Australia with a series of community events.
Host a BIG AUSSIE BARBIE: STEP 1: Go to www.bigaussieBARBIE.com.au to register your best ever BIG AUSSIE BARBIE STEP 2: Rally your friends, family, neighbours and work colleagues to come along to your BIG AUSSIE BARBIE and start to raise funds STEP 3: Enjoy a well-earned BBQ with good company, for a great cause!
Start fundraising now!
Now is the time to join thousands of Australians and register to host your best ever BIG AUSSIE BARBIE Major Sponsor
Stellar support for barbie PCFA’s Best Ever BIG AUSSIE BARBIE 2012 fundraising campaign is being supported by some of Australia’s most recognised, and loved, personalities PCFA is thrilled to have once again secured chef, author and television presenter Ben O’Donoghue as its Celebrity Chef Ambassador for this year’s Best Ever BIG AUSSIE BARBIE fundraising campaign. Ben is sure to draw a crowd when he cooks up a storm as host of the Sydney, Brisbane and Melbourne Best Ever BIG AUSSIE BARBIE launch events and will also be providing barbie cooking inspiration by sharing some of his favourite barbie recipes on the Best Ever BIG AUSSIE BARBIE website. Other celebritiy ambassadors helping PCFA to turn up the heat on prostate
cancer this year include former Australian cricketer Matthew Hayden, actor Les Hill, rugby league footballers Ben Ross and Michael Ennis and Radio 2GB’s Alan Jones and Ray Hadley. Matthew, a keen cook who’s published two cookbooks, will help host PCFA’s Brisbane launch and will also share some of his favourite barbie recipes on the website. Look out for Ben, Matthew, Les, Ben and Michael in PCFA’s Best Ever BIG AUSSIE BARBIE television campaign, airing from mid-July.
Celebrity Chef, Ben O’Donoghue
Welcome to our newest barbie sponsor Rosella
Independence Australia supports the Prostate Cancer Foundation of Australia (PCFA) and those living with Prostate Cancer. We can provide information and assist PCFA clients to choose the right continence products. Talk to our Urology Continence Nurse Advisor on: 1300 788 855 or email askthenurse@independenceaustralia.com Download our brochure of products for the “Active Man” at; www.independenceaustralia.com/health-solutions/ products-services/download-catalogues/
T 1300 788 855 F 1300 788 811
E customerservice@independenceaustralia.com www.independenceaustralia.com
OPINION
Does testing for prostate cancer save lives? The answer from everyone in the PCFA community is an emphatic,YES! Many men in our community have had treatment following a blood (PSA) test and/or internal examination (DRE) and feel that they are alive today because their prostate cancer was detected and treated early. Sadly, we all know friends and colleagues whose cancer was not detected early who are no longer with us or who are really suffering with advanced disease So why does testing remain so controversial and contentious? Why did the US Preventive Services Task Force recommend against PSA testing? Surely a test that saves lives is a good thing? There have been many scientific studies into PSA testing. The two largest were conducted in the US (PLCO) and Europe (ERSPC). The US study did not show any reduction in deaths from prostate cancer through testing, whilst the European study showed a 21% reduction in deaths. Statistically, both studies cannot be correct (unless we believe US and European prostate cancers are different!), so which should we believe? How can two very large studies come to such different conclusions?
ITS CLEAR: PSA TESTING SAVES LIVES In the US, like Australia, PSA testing is very common. It is far less common in Europe. Analysis of the US study shows that 43% of men in the “no testing” group had a PSA test within three years of starting the study and 52% of men in the “no testing” group had a PSA test after they entered the study. So really, the US looked at the difference between an organised population based screening program, like BreastScreen, and an unorganised approach to PSA testing such as we have here in Australia. Computer simulations have confirmed this is the case. So, now we know that the results of the European study are correct and that PSA testing saves lives.
That’s the good news. The bad news is that the European study shows that 33 men need to be treated for prostate cancer to save one life. How can that be? The answer lies in the nature of prostate cancer. There are aggressive prostate cancers that are deadly, but there are also slow growing cancers that will never cause a man any harm in his lifetime. What we really need to be able to do is tell the difference between the two types, but PSA testing cannot do that. Hence, as in other cancers, there has been “over-diagnosis” and “over-treatment”, where men are treated for prostate cancer when they did not need to be. Put another way, there has been a lot of unnecessary anxiety, side effects like incontinence and erectile dysfunction, and expense, which could have been avoided to save one man’s life. Active surveillance is now
a common treatment option which has helped considerably in reducing “overtreatment” and hence causing less harm. Every man’s life is valuable. That is why we need evidenced-based national clinical guidelines to bring some order to PSA testing. The guidelines would maximise the lives saved through testing, whilst minimising the negative side effects. I am pleased to report that PCFA is working on that right now in partnership with Cancer Council Australia and, of course, our urologist, pathologist and epidemiological colleagues. Dr Anthony Lowe, Chief Executive Officer, PCFA
SUPPORT
The Shed Online: connecting men To help men connect with others, beyondblue has developed a community website which encourages and promotes discussion around depression, anxiety and other health issues in an anonymous, private forum Recent research tells us something that many already know. Men often find it hard to discuss their feelings, especially if they are depressed or anxious. They may feel stigmatised, weak, embarrassed and fearful about what people may think of them. To help them connect with others, beyondblue has developed a community website which encourages and promotes discussion around depression, anxiety and other health issues in an anonymous and private forum. The Shed Online, www.theshedonline. org.au is an online social community for men, founded by beyondblue, the Movember Foundation and the Australian Men’s Shed Association. According to beyondblue CEO, Kate Carnell: “Like the original Men’s Sheds, The Shed Online is a place for men to socialise, network, make friends and share skills. It aims to recreate the atmosphere of “real life” Men
Sheds – a safe space where men can feel confident to discuss issues and exchange information. The Shed Online aims to foster a sense of community and build men’s social networks. “The Shed Online also provides men with information on health and wellbeing. Good health is based on many factors including feeling good about yourself, being productive and valuable to your community, connecting with friends and maintaining an active body and mind. Becoming a member of The Shed Online gives men a safe environment where they can develop many of these things in the spirit of “oldfashioned mateship,” Ms Carnell said. Since its launch in December 2010, The Shed Online has made considerable progress. Statistics show that The Shed Online is already the largest shed community in Australia. Since its launch, it has had 133,000 hits and has 3,420 members who have made 5,790 posts.
FIND YOUR LOCAL PCFA AFFILIATED GROUP PCFA is proud to have a national network of affiliated groups in each State and Territory of Australia consisting of men and women who have a passion for assisting others who encounter prostate cancer. This network is made up of over 127 groups who meet locally, either monthly or quarterly, to provide support and information to men and their families dealing with prostate cancer. Many members have received medical treatment and live happy lives post treatment. They enjoy the social side of their group as well as helping raise awareness about early detection of this insidious disease.
VISIT PCFA.ORG.AU to locate the PCFA affiliated group closest to you
127
groups affiliated ing & grow
“It is in the discussion forums that you can see the real success of this initiative,” said Ms Carnell. “Men can discuss topics as varied as ‘roasting chicken for one’ to ‘jokes and funny stories’ to ‘prostate cancer’ or ‘depression’. New members are welcomed by community members; and you can see that in the forums men give each other advice, whether it’s shed-related or life-related.” With more than 400 sheds representing an estimated 30,000 men, AMSA is the largest men’s support organisation in Australia. The on-line Shed is now the largest “Shed” in Australia.
PARTNERSHIPS
Australian Survivorship Action Partnership An exciting new initiative recently announced by the Movember Foundation aims to provide national solutions to the physical and mental health issues faced by prostate cancer survivors, their families and carers
PCFA would like torecognise the Movember Foundation as a key funder of the Australian Survivorship Action Partnership
In this issue
The Movember Foundation recently announced an exciting new initiative, the Australian Survivorship Action Partnership (ASAP). The partnership will create a collaborative network of organisations to identify, develop and put into practice national solutions to the physical and mental health issues faced by prostate cancer survivors, their families and carers. ASAP will be funded by Movember, with support from beyondblue: the national depression and anxiety initiative. In total, Movember and beyondblue have committed $6.25 million over three years to the program. PCFA is a partner in ASAP. PCFA representatives will sit on the Steering Committee, two support group members, David Gregory and Tony Maxwell, will represent survivors, and our Prostate Cancer Specialist Nurses will be fully involved. Over the next three years ASAP is set to make a real difference to the quality of life for men living with prostate cancer and their families and carers.
WRITE TO US
what is ‘survivorship’? The US National Cancer Institute defines survivorship in the following way: In cancer, survivorship focuses on the health and life of a person with cancer post treatment until the end of life. It covers the physical, psychosocial, and economic issues of cancer, beyond the diagnosis and treatment phases. Survivorship includes issues related to the ability to get health care and follow-up treatment, late effects of treatment, second cancers, and quality of life. Family members, friends, and caregivers are also considered part of the survivorship experience.
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For more information about prostate cancer and PCFA, please call 1800 22 00 99, or visit pcfa.org.au