December 2004

<body topmargin=0 leftmargin=0 marginheight=0 marginwidth=0> <table cellpadding=0 cellspacing=0 border=0><tr> <td valign="top" height=120 BGCOLOR="#CCCC99" TEXT="#080000" bgproperties="fixed" background="03f8dfe1esnpes.jpg"> <div> <B>December 2004</B></div> <bR> <div> <A HREF="id3.htm" TARGET="_top" TITLE="Calendar"><U><B><U>Calendar</U></B></U></A><A HREF="id3.htm" TARGET="_top" TITLE="Calendar"><U><B> </B></U></A><B>  |   </B><A HREF="id60.htm" TARGET="_top" TITLE="Carers Group"><U><B><U>Carers Group</U></B></U></A><B>   |   </B><A HREF="id2.htm" TARGET="_top" TITLE="Group Guidelines"><U><B>Group Guidelines</B></U></A><B>   |  </B><A HREF="id61.htm" TARGET="_top" TITLE="Library"><U><B> </B></U></A><A HREF="id61.htm" TARGET="_top" TITLE="Library"><U><B><U>Library</U></B></U></A><B>   |   </B><A HREF="id4.htm" TARGET="_top" TITLE="Current Newsletters"><U><B><U>Current Newsletters</U></B></U></A><B>   |   </B><A HREF="id16.htm" TARGET="_top" TITLE="Archived Newsletters"><U><B><U>Archived Newsletters</U></B></U></A><B>   |   </B><B><U>Pamphlets</U></B><B>  |  </B><A HREF="index.htm" TARGET="_top" TITLE="Northern Beaches Prostate Cancer Support"><U><B><U>Hom</U></B></U></A><B><U>e</U></B></div> <div> </div> </td> </tr><tr> <td valign="top" height=360 BGCOLOR="#CCCC99" TEXT="#080000" bgproperties="fixed" background="03f8dfc3.jpg"> <div> <B><U>NEWSLETTER</U></B></div> <bR> <div> <B>No. 30. December, 2004</B></div> <bR> <div> Editor: John Conroy</div> <bR> <div> <I><B>A MERRY CHRISTMAS AND A HAPPY NEW YEAR</B></I></div> <bR> <div> <B>1. COMING EVENTS</B></div> <bR> <div> a) 6.30 pm, Tuesday, 7 December Christmas Get-Together A chance to get together for a guaranteed relaxed evening. Bring your wife, partner, family and/or friends for a smorgasbord supper with first class eats, - and a few friendly drinks. Why not bring along a mate who hasn't been to one of our meetings? Donation at the door.</div> <div> RSVP - by Thursday, 25 November, please (to assist with catering)<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <div> to: Jo-Ann Steeves 9918 6575 <FONT SIZE="3" COLOR="#0000FF" FACE="Tahoma" ><A HREF="mailto:steeves@pacific.net.au" TARGET="_top" TITLE="mailto:steeves@pacific.net.au"><U><U>steeves@pacific.net.au</U></U></A></FONT><FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <div> or Norma Bennett 9918 4929 <FONT SIZE="3" COLOR="#0000FF" FACE="Tahoma" ><A HREF="mailto:thebenits@bigpond.com" TARGET="_top" TITLE="mailto:thebenits@bigpond.com"><U><U>thebenits@bigpond.com</U></U></A></FONT><FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <div> or John Conroy 9918 9358 <FONT SIZE="3" COLOR="#0000FF" FACE="Tahoma" ><A HREF="mailto:conroyjs@bigpond.com" TARGET="_top" TITLE="mailto:conroyjs@bigpond.com"><U><U>conroyjs@bigpond.com</U></U></A></FONT></div> <bR> <div> b) NO JANUARY MEETING</div> <bR> <div> c) 6.30 pm, Tuesday,1 February First meeting for 2005. [Note that this meeting is on the first Tuesday, which is also the first day of the month.] Regular meetings are held at 6.30 pm on the first Tuesday of each month in the Palliative Care Cottage, Mona Vale Hospital. All friends, partners, carers, and family members are welcome. Refreshments will be served.</div> <div> Our Website.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT>www.nbprostatesupport.com.au</div> <bR> <div> <B>2. REPORT OF THE MEETING HELD ON:</B> Tuesday, 2 November.</div> <bR> <div> a. Apologies were received from Una Conroy, Richard Darmopil, Ernie and Freda Treloar, and Philip and Wallis West. We welcomed two members attending for the first time: Stewart Imwald and Don Roberts. Also, we were delighted to greet a visitor, Ms Jane Picker, from the Cancer Council NSW, - a colleague of the evening's speaker.</div> <bR> <div> b. It was a pleasure to welcome back to the Cottage Mr David Smith of the Cancer Council NSW. David spoke to our Group in March, 2003, on the epidemiology of Prostate Cancer in NSW and Australia. On that occasion he indicated that there was a lot still to come from the research being done then by the Cancer Council, and we managed to extract from him a promise to come back and continue the story. So tonight he did just that.</div> <bR> <div> David Smith began by explaining that the word epidemiology comes from epidemic. It aims to give a helicopter view of what happens in health. The kinds of things his Research Unit look at include: What causes diseases like Prostate Cancer? How do people access hospital and medical services? How do men use the Prostate Cancer treatments and options available to them? How do we get good data on what happens to people after they are treated?</div> <bR> <div> David's first topic was an overview of progress on the Prostate Cancer Outcomes Study (PCOS). This is a population wide investigation of the patterns of outcomes of care for Prostate Cancer sufferers in NSW. The cases of 2 000 men with Prostate Cancer were studied (some of our own Members have participated), along with 500 otherwise healthy men who acted as controls. After the initial interviews, there were follow-up interviews 1, 2, 3 and 5 years later. Each man gave his consent for the Cancer Council to obtain his medical notes and Medicare data. David presented maps showing the distribution across Sydney and NSW of the men participating. All were recruited by the NSW Cancer Registry. There was a good representation from all regions. The research was funded by the Department of Veterans Affairs.</div> <bR> <div> The aims of the PCOS study were:</div> <div> * to describe patterns of care for Prostate Cancer<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <div> * to describe quality of life of men with Prostate Cancer according to the type of treatment they had<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <div> * to describe the supportive care needs of men which were not met<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <div> * to describe the coping mechanisms used by men with Prostate Cancer<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <div> * to determine men¹s preferences for management options by finding out their views on the relative tolerability of various side effects<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <div> * to describe to the health care system the costs of care provided to men with Prostate Cancer.</div> <bR> <div> Results showed that overall survival is improving. At the beginning, 60% of sufferers survived beyond 5 years; now the figure is approximately 80%. Also, there are no apparent differences in mortality between treatments. So far, there are no clear results from treatment trials, and there is a lack of clear guidelines for choosing between treatments.</div> <div> Quality-of-life outcomes are vital in men's decision-making. Quality is balanced against predicted quantity of life remaining. David showed a graphic cartoon strip of a sailing boat in mid ocean, with the aptly suggestive captions:</div> <bR> <div> Some vessels may spring a leak<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <div> Some vessels may lose their mast<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <div> The important thing is to stay afloat.</div> <bR> <div> The University of California, Los Angeles has developed a comprehensive index to measure this important issue of quality of life after Prostate Cancer. Some of the items identified include: physical functioning, physical role, bodily pain, general health sexual function, urinary function, bowel function, hormone related function, and depression. David then presented some preliminary progress figures from the 'Outcomes' study: 178 doctors had collaborated, and 65% of the eligible cases had been recruited. 2014 men had been included in the baseline interviews, and 1918 men had the 1-year post diagnosis interview. Of these, 1793 have had the 2-year post diagnosis interview, and 978 have had the 3-year interview (754 men have not yet been contacted for this). 978 men undertook the Supportive Care Needs Assessment and 875 undertook a survey of coping strategies. Of the 500 controls, 5 have been diagnosed with Prostate Cancer, 39 have withdrawn, and 6 are deceased.</div> <bR> <div> Some of the clinical data collected to date are as follows: 204 doctors collaborated in this aspect of the study; 1926 men consented to become involved; 92% of the data has been collected from primary clinicians; and 2% of patients or doctors later refused to participate. 1210 referrals were made to an additional 156 clinicians.</div> <bR> <div> Question 1 of the Baseline survey was: In general would you say your health in the 4 weeks prior to diagnosis was: excellent, very good, good, fair, or poor? Results for both the patients and the control groups were close to identical. In the 1-year follow up, the question was repeated in relation to general health during the last 4 weeks, and again the results were very similar. (This would seem to confirm how symptomless Prostate Cancer is. Ed.)</div> <bR> <div> There were some preliminary longitudinal results in relation to men in both cohorts reporting erections insufficient for intercourse. The baseline data showed a proportion of 25% for both patient and control groups. The patient group peaked after 1 year but recovered after 2 years, levelling out at 75% after three years. The control group showed a slight increase after 1 and 2 years, probably due to aging.</div> <div> Primary treatment options elected by the patient group were as follows:</div> <div> <TABLE BORDER="0" CELLPADDING="1" CELLSPACING="1" WIDTH="267" BORDERCOLORLIGHT="#C0C0C0" BORDERCOLORDARK="#808080" FRAME="VOID" RULES="NONE" HSPACE="0" VSPACE="0" > <tR> <tD VALIGN=TOP HEIGHT= 19 WIDTH="191"><div> surgery</div> </tD> <tD VALIGN=TOP WIDTH="69"><div> 55%</div> </tD> </tR> <tR> <tD VALIGN=TOP HEIGHT= 19 WIDTH="191"><div> radiotherapy {Rt}</div> </tD> <tD VALIGN=TOP WIDTH="69"><div> 11%</div> </tD> </tR> <tR> <tD VALIGN=TOP HEIGHT= 19 WIDTH="191"><div> external beam</div> </tD> <tD VALIGN=TOP WIDTH="69"><div> 10%</div> </tD> </tR> <tR> <tD VALIGN=TOP HEIGHT= 19 WIDTH="191"><div> brachytherapy</div> </tD> <tD VALIGN=TOP WIDTH="69"><div> 1%</div> </tD> </tR> <tR> <tD VALIGN=TOP HEIGHT= 19 ><NOBR><div> hormone treatment {Ht}</div> </NOBR></tD> <tD VALIGN=TOP WIDTH="69"><div> 9%</div> </tD> </tR> <tR> <tD VALIGN=TOP HEIGHT= 19 ><NOBR><div> combined Ht and Rt</div> </NOBR></tD> <tD VALIGN=TOP WIDTH="69"><div> 14%</div> </tD> </tR> <tR> <tD VALIGN=TOP HEIGHT= 19 WIDTH="191"><div> watchful waiting</div> </tD> <tD VALIGN=TOP WIDTH="69"><div> 11%</div> </tD> </tR> </TABLE></div> <bR> <div> The next piece of research David reported on was the Men's Treatment Preferences Survey. This is an attempt to investigate how men weighed up the benefits of treatment options available to them against the possible side effects. The main purpose of the study was to measure men's preferences for different treatment options, and to inform future patients when they have to make decisions. The participants will be a random sample of 400 of the PCOS men, both patients and controls. The survey contains 16 hypothetical scenarios that describe possible effects of treatment. Participants have to choose which treatment they would prefer in light of these possible side effects. This study is in progress.</div> <bR> <div> A proposed new study for which funding is being sought relates to PSA testing, and deals with decision making, psychological effects, and patterns of care. Each year in NSW there are over 300 000 PSA tests carried out. There is still considerable debate over PSA testing as a screening test for Prostate Cancer. The aims of the study are to determine the type and amount of information obtained by men about PSA testing; men's reasons for either having or not having a PSA test, and the process they used in making their decision; the psychological effect of testing, - both short-term and 12 months later; men's perceptions of the positive and negative effects of being tested; men's recollections of their test results; and the patterns of care men receive when they have an abnormal PSA test result.</div> <bR> <div> The proposed method is to divide the participants into groups:</div> <div> men unaware about PSA testing<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <div> men who are aware but have never been tested<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <div> aware men but who were last tested more than 12 months ago<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <div> aware men recently tested who had a normal result<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <div> aware men recently tested who had an abnormal result.</div> <bR> <div> A telephone survey will be made of 2500 men selected randomly from the electoral role, and aged from 50 to 84 years. Participants will be followed up 1 year later.</div> <bR> <div> David next presented material relating to the incidence of Prostate Cancer world wide. A world map showed that the regions with the highest incidence include North and South America, Western Europe, South Africa, Australia (in the top 20% of countries) and New Zealand. Regions of lowest incidence include North Africa, the Middle East, the Indian sub-continent, Indonesia , China and Japan. Among the NSW male population, men born in Australia have the highest incidence of Prostate Cancer compared to men born overseas, with Asian born men having the lowest incidence.</div> <bR> <div> Another case/control study, partly funded by Rotary, is looking at lifestyle and cancer risk. This is looking at lifestyle characteristics and their relation to cancer among Australians, immigrants and their home communities. 47% of Australians have one or more parents born overseas, and there is a significant variation in cancer among migrants. The investigation will include a questionnaire, follow-up and taking blood samples. The Cancer Council will seek collaboration from outside Australia on this study.</div> <bR> <div> The number of Australians aged 65 years and over will double within the next 15 to 20 years. The 45 and Up study is investigating what are the health consequences of this. It will have some seeding funding from NSW Health. There are a several collaborators to the study, from areas including cancer, cardio-vascular disease, obesity and mental health. The team includes a Prostate Cancer sub-committee. A sample of 250 000 people aged 50 years and over will be involved and will be followed up over 10 years. Extensive use will be made of linking electronic health records.</div> <bR> <div> The Prostate Cancer Foundation of Australia is funding an investigation of Clinicians' attitudes to support groups. This is the third part of a commissioned research project into roles of Prostate Cancer support groups, and is being conducted in collaboration with Suzanne Steginga of Queensland. Clinicians will be interviewed regarding attitudes, opinions and interactions with support groups. Ten doctors each from NSW, Queensland, South Australia and Victoria will be involved.</div> <bR> <div> The Prostate Cancer Call-in on 23 September resulted in 1006 calls on the day, compared with 60 on a normal day. 65% of calls were from men, whereas they usually form only 25% of callers. The largest proportion of callers were in the 60-69 years age group, followed by about equal proportions in the 50-59 and 70-79 years age groups. Roughly equal proportions of callers (over 25%) discussed screening and symptoms, while a further 15% discussed equally prevention and treatment. Smaller proportions wanted information on diagnosis and recurrence. 85% of callers had heard about the Call-in through the media, 72% from the radio and 13% from newspapers.</div> <bR> <div> David finished his presentation with another cartoon, - of a victorious boxer. The positive and optimistic caption read: Even when cancer hits below the belt you can still win the fight.</div> <bR> <div> <B>3. INFORMATION UPDATE</B></div> <bR> <div> a.) National Awareness Campaign, 2005 The Prostate Cancer Foundation of Australia has obtained funding to mount a national Prostate Cancer Awareness Campaign. This will be launched in Martin Place, Sydney at 12 noon on Wednesday, 19 January, 2005. Federal MPs Wayne Swan and Jim Lloyd will be present, along with a number of other celebrities. Following the launch, there will be various advertisements on TV. Keep the date free and come along to lend support to the Foundation's campaign.</div> <bR> <div> b.) Pamphlet #2: I've Just Been Told I've Got Prostate Cancer</div> <div> The second pamphlet in our series is now about to go to press and will be available in the New Year. Meanwhile it can be viewed on this website. It deals with information worth collecting that might be helpful when you have to make decisions about the treatment options given to you.</div> <bR> <div> c.) Publications received</div> <div> The following publications have been received from other Groups and Organisations and are available through our Lending Library:</div> <div> * Prosupport, November, 2004. Newsletter of the Royal North Shore ProstateCancer Support and Information Group.</div> <div> * Prostate Cancer Support Group Newsletter, November/December, 2004. Cancer Support Centre, Jacaranda Lodge, Sydney Adventist Hospital.</div> <div> * Us Too: Prostate Cancer Education & Support Hotsheet. Issues for September, October and November, 2004. Us Too International, Illinois.</div> <div> * The Healthy Male. Issue 12, Spring 2004. Newsletter of Andrology Australia.</div> <div> * Adshead, J.M. & Stricker, P.D., Localised prostate cancer: questions patients ask. Reprint from Medicine Today, September, 2004.</div> <bR> <div> d) PCFA</div> <div> John Conroy attended a meeting of the NSW Chapter of the PCFA held at Jacaranda Lodge, Sydney Adventist Hospital on Thursday, 18 November. Topics discussed included: updates on PCFA activities; updates from Support Groups around the State; election of office bearers to the National Support and Advocacy Committee; progress on a revised Speakers Kit; and collaboration with the Cancer Council NSW.</div> <div> Please note: During meetings, all discussion and comment about members' individual circumstances and experiences is confidential and should not be repeated outside the Cottage walls!</div> <bR> <bR> <div> <B>YOUR CONTACT NUMBERS</B></div> <bR> <div> <TABLE BORDER="0" CELLPADDING="2" CELLSPACING="1" WIDTH="664" BORDERCOLORLIGHT="#C0C0C0" BORDERCOLORDARK="#808080" FRAME="BOX" RULES="ALL" HSPACE="0" VSPACE="0" > <tR> <tD VALIGN=TOP HEIGHT= 116 WIDTH="357"><div> <U>Program Co-ordinator</U> </div> <bR> <div> Dr Peter Moore </div> <div> Northern Beaches Palliative Care<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <div> 9997 3555 </div> </tD> <tD VALIGN=TOP WIDTH="296"><div> <U>Group Leader</U></div> <bR> <div> John Conroy<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <div> 9918 9358<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <div> <A HREF="mailto:conroyjs@bigpond.com" TARGET="_top" TITLE="mailto:conroyjs@bigpond.com"><U><U>conroyjs@bigpond.com</U></U></A></div> </tD> </tR> <tR> <tD VALIGN=TOP HEIGHT= 89 ><NOBR><div> <U>NSW Cancer Council Cancer Support Helpline</U></div> <bR> <div> 13 11 20<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> </NOBR></tD> <tD VALIGN=TOP><NOBR><div> <U>Prostate Cancer Foundation of Australia</U></div> <bR> <div> 1800 220 099</div> </NOBR></tD> </tR> </TABLE></div> <bR> <bR> </td> </tr></table></body>