December 2003

<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 2003</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> </td> </tr><tr> <td valign="top" height=360 BGCOLOR="#CCCC99" TEXT="#080000" bgproperties="fixed" background="03f8dfc3.jpg"> <div> <B><U>NEWSLETTER</U></B><FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> <B>No. 19. December, 2003</B><FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> Editor: John Conroy<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> 1. REPORT OF THE MEETING HELD ON: Tuesday, 4 November<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> a.) Apologies were received from Richard Darmopil, Bill Liney, Jo-Ann Steeves, Keith Stilling and Barry West.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> b.) We had the pleasure of welcoming a new member, Robin Casson, from Manly, who is at the decision-making stage of his journey with Prostate Cancer.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> c. This month, we were delighted to have David and Pam Sandoe as our guest speakers. David and Pam are the joint leaders of the Prostate Cancer Support Group at Jacaranda Lodge, Sydney Adventist Hospital (the San.), Wahroonga.They spend a lot of their time travelling to various centres recounting how David's experiences with Prostate Cancer have impacted on their relationship.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> David has been in the financial services industry for the past 34 years, 16 of which were with Zurich Financial Services. He is currently with a firm of actuaries. Seven years ago, while undergoing a routine check-up, he found that his PSA reading was 8.9. A Digital Rectal Examination (DRE) indicated an enlarged prostate. A subsequent biopsy recorded a Gleason score of 6, suggesting a mildly aggressive cancer. There had been no symptoms. Being an active man, and doing a lot of travelling, David opted for a radical prostatectomy.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> This was at the relatively young age of 51 years. It was at the time when the television personality, Roger Climpson, had his encounter with Prostate Cancer and was becoming a prominent advocate for awareness and action. David, whose surgeon was Dr Phillip Katalaris, recovered in the normal time of six weeks but was left with some erectile dysfunction. Having had an otherwise successful outcome, David decided he wanted to put something back. He and Pam became joint leaders of the San's Support Group, which holds monthly meetings on second Mondays in the afternoon and fourth Mondays in the evening, and also runs sessions to train facilitators. David is also a director of the Institute of Magnetic Resonance at Sydney University through his role as a consumer advocate.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> As well, David is on the board of the Prostate Cancer Foundation's Support and Advocacy Committee, which has branches across NSW, and these link up by teleconferences Country men are reluctant to talk about prostate issues and often they find out their condition too late. Currently there is a country awareness program and sometimes audiences can be as large as 200. David has now been asked, with Pam working from home, to run the NSW Chapter of Support Groups. There are also groups across Australia in Western Australia, Melbourne, Darwin and Queensland. Pam and David work as a duo: Pam answers the phone and refers calls to David, who works in the evenings and at weekends. He has talked to many men in a range of age groups. He gets calls from all over Australia, most often from men newly diagnosed who are considering the options open to them, next often from men with erectile dysfunction, and then men with incontinence problems. David works closely with urologists, radiation therapists and radiation oncologists. In order to understand better and get a greater insight into the urologist's work, David was invited to go into a theatre to see a three hour radical prostatectomy (which he survived!). He has also witnessed the Brachytherapy rods procedure.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> He believes it is essential to get the confidence of urologists concerning the value of support groups. At the San., they have an annual dinner, sponsored by a pharmaceutical company, for the urologists working at the Hospital. The urologists are now beginning to appreciate the work of support groups, but less so regarding carer groups. As a pair, David and Pam have pushed the carer's involvement. This is very much understated, and doctors need to be aware of this. Carers need to be fully informed; for example, of the normal side effects of hormone therapy for aggressive Prostate Cancer. Now that urologists are hearing this message, they realise there is business in it for them. It becomes a chain reaction.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> David says he gets good media coverage to spread the word. Together with Dr Philip Stricker, the Honorable Wayne Swan and Ita Butrose, they formed a panel at an awareness-raising luncheon at the Sheraton Hotel in September this year. Premier Bob Carr was there. Pam spoke of their role in the San.'s Support Group. They have found it more convenient for carers to be with the men for about 45 minutes during a session, then to break into groups so that the men and the women can talk together separately on more intimate matters. Till recently, they had the case manager of a urologist as helper, who would take the men through the treatment process and point out possible side effects. They would also talk with the men and their carers over issues to come. For example, they would demonstrate the artificial sphincta for men facing incontinence. </div> <bR> <div> The session then moved into questions and general discussion. David still has an annual PSA test. Normally, after a prostatectomy, the test is done three monthly, then six monthly and then annually. It is always best to have the test done by the same pathologist as there can be variance in methods and results. For David, incontinence is not an issue, though he is not as good as he was. This is fairly normal. For safety, he wears a dark suit and a panty liner. Men who have had an artificial sphincta fitted find it awkward and painful initially, but swear by it if incontinence is a bad problem. It is now possible to have both an artificial sphincta and an erectile prosthesis. With the latter, there can be a danger of priapism; that is an erection that can last more than four hours, and this can lead to serious damage.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> Erectile dysfunction. When men receive a diagnosis of Prostate Cancer, most want to consider the options carefully and to choose the right treatment. Once they have handled facing the treatment, they then have to handle impotence side effects. Men who undergo nerve sparing surgery may still have erections, but not ones worthy of penetration. They then start to talk about their options. Often finding the right solution is a mater of trial and error. The body;s reaction is critical Viagra is not found to work if the nerves have been damaged. But there are alternatives for men who think that sex is out. Many specialists will suggest using penile injections, which you can get used to after a while. Another option is the vacuum pump. This is a cylinder which you fit over the penis, and which draws blood into the penis using a pump action. A ring is then slipped off the cylinder onto the base of the penis, and this holds the erection for 20 to 30 minutes. The ring is then removed. Many couples prefer this option. While it is mechanical, it is natural, and no chemicals are involved. The downside is going through all the procedure before sex. It can be difficult for overweight men to see what they are doing. A pump will cost around $600 to $700, but it can last for several years. Cheap models can be had at porn shops. Also, it is now possible to buy battery operated versions to avoid pumping. An erectile prosthesis consists of rods inserted permanently into the penis. A pump is used to pump a saline solution from a reservoir into the penis, and this makes the penis erect. [One of our members, Ted Crabb, strongly recommended a device which stimulates an erection via a low electric current. It is called Dr Blakoes's Libido Ring and is available from Jane Peters Health and Educational Products, Airlie Beach, Queensland for around $300 to $400. Ted is happy to give details to anyone interested by phoning him on 9918 2523.]<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> Another member raised the issue of knowing whether or not there was Prostate Cancer in the family which could put you in the high risk bracket. It's not necessarily a thing that is discussed in the family, and a GP may not know other family members to refer to. Perhaps there is a need for an awareness program among GPs to gather this kind of background information.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> <B>3. NORTHERN BEACHES PROSTATE CANCER CARERS' GROUP</B><FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> The Carers' Group will join the Men's Group at this year's Christmas Party at 6.30 pm on Tuesday, 2 December in the Palliative Care Cottage. We look forward to a relaxing and enjoyable evening together.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> <B>4. THE HEALTHY MAN'S GUIDE TO PROSTATE PROBLEMS</B><FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> Hope Healthcare has offered to produce this as a glossy brochure. We are delighted by this very generous gesture. The brochure should enable us to spread information about the Support Group and about Prostate Cancer ever more widely around the Northern Beaches. We hope to run an awareness campaign at the beginning of 2004. Any input and assistance from members will be very much appreciated.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> <B>5. INFORMATION UPDATE</B><FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> a.) A meeting of 43 Northern Beaches GPs was held at the Mona Vale Conference Centre on Wednesday, 5 November, to hear a debate on the pros and cons of PSA testing. Professor Alan Coates took the negative position and Dr Philip Katalaris spoke in favour. It was an excellent opportunity for GPs to hear both sides of the argument.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> b.) There was an item on the ABC's AM program on Wednesday, 1 October, on research into the emotional scars associated with Prostate Cancer. You can log onto this at:<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> <A HREF="http://www.abc.net.au/am/content/2003/s957403.htm" TARGET="_top" TITLE="http://www.abc.net.au/am/content/2003/s9"><U><B><U>http://www.abc.net.au/am/content/2003/s957403.htm</U></B></U></A><FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> c.) The ABC's PM program broadcast an item concerning a study suggesting that green tea can prevent prostate cancer. You can log onto this at:<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> <A HREF="http://www.abc.net.au/pm/content/2003/s984060.htm" TARGET="_top" TITLE="http://www.abc.net.au/pm/content/2003/s9"><U><B><U>http://www.abc.net.au/pm/content/2003/s984060.htm</U></B></U></A><FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> d.) I have a copy of a short article by Dr Phillip Katalaris, entitled: Men's business should not be secret. This is available for anyone who might be interested to read Dr Katalaris's views on PSA testing.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> d.) Your guide to Prostate Cancer the disease, treatment options andoutcomes. This is a new book published by Dr Prem Rashid, a consultant urologist on the Central Coast. I shall obtain a copy for the Group's Library. An earlier book by Dr Rashid, Your Prostate, is available for borrowing from our Library.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> <B>7. REMINDERS: DATES OF NEXT MEETINGS: </B>(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.)<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> 2 December CHRISTMAS PARTY. Combined with the Carers' Group. Come for a relaxing and enjoyable evening and share some Christmas cheer! Some of the year's speakers have been invited. Light music on the piano provided by Richard Darmopil. Come and sing along!<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> <B>NO JANUARY MEETING</B><FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> 4 February First meeting for 2004.</div> <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>