June 2005

<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>June2005</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></div> <bR> <div> No.35.  June, 2005</div> <bR> <div> Editor: John Conroy</div> <bR> <div> <B>1. </B>  <B>COMING  EVENTS</B></div> <bR> <div> a)    6.30 pm,  Tuesday, 7 June Prostate Cancer  -  Treatment and Access. Rural Health Education Foundation Video Panel Presentation:</div> <bR> <div> Panel of Presenters:</div> <div> Dr Norman Swan         Chair;  ABC Health Report</div> <div> Dr Suzanne Steginga    Psychiatrist;  Queensland Cancer Foundation</div> <div> Dr Glen Wood        Urologist;  Brisbane Urological Clinic</div> <div> Dr Matt Byrne        General Practitioner and Consumer;</div> <bR> <div> Wangaratta, Victoria</div> <div> Dr Sandra Turner        Radiation Oncologist;  Westmead Hospital</div> <div> Mr David Sandoe        Consumer;  Prostate Cancer Foundation of Australia</div> <bR> <div> Here is a panel of experts broadcasting to rural GPs across Australia. Each speaker explains how he/she makes a diagnosis, what treatment options are offered to whom and why. They explain the procedures they use and the outcomes they expect from each one. It is a fascinating insight into the up-to-date information given by the specialists to GPs, using diagrams and point lists, and a minimum of technical jargon. Doctors themselves are able to send in questions during the presentation either by phone or e-mail. Particularly interesting are the comments of the GP who is himself a victim of Prostate Cancer.</div> <bR> <div> b)    6.30 pm,  Tuesday, 5 July Dr Philip Katelaris:    Prostate Cancer:  Recent Developments</div> <bR> <div> Meetings are held in the Palliative Care Cottage, Mona Vale Hospital.  All welcome.</div> <bR> <div> Please note:  During meetings, all discussion and comment about members' individual circumstances and experiences are confidential and should not be repeated outside the Cottage walls!</div> <bR> <div> <B>1.    REPORT OF THE MEETING HELD ON TUESDAY, 5 APRIL, 2005</B></div> <bR> <div> There was one new member welcomed into the Group by all in attendance: Mark Tweeddale from St Ives.</div> <bR> <div> On time and with a welcoming smile was our guest speaker, Dr Ken Vaux. He discussed the concerns of men facing the problem of incontinence after surgery or other treatments for Prostate Cancer.</div> <bR> <div> Dr Vaux commenced by saying that there are three basic reasons for incontinence:</div> <div> i]    overflow, i.e., the bladder is full, and over-exertion will lead to leakage;</div> <bR> <div> ii]    urgent need for bladder relief; - if you need to go, - then go!</div> <bR> <div> iii]    stress:  this is a real problem with incontinence.</div> <bR> <div> Note that the bladder will hold about 'two litres plus' of liquid.</div> <bR> <div> Drugs are a method of control, though they may cause side effects, namely:</div> <div> i]    dryness of mouth [water is the best relief, but this will expand the bladder];</div> <bR> <div> ii]    cardiac side effects [consult your doctor];</div> <bR> <div> iii]    reflux problems.</div> <bR> <div> After Prostate surgery, stress builds up and even by exercising you could have a blockage of the urethra.  In this case, a 'rebore' [TURP] or the insertion of an artificial sphincter may be necessary.  A TURP may also be carried out where the nerves cause the problem;  it may be necessary to tie them off to narrow the flow from the bladder.</div> <bR> <div> Stress-related incontinence is a problem for many Prostate patients worrying about what might happen. The use of a pad or catheter are alternatives and there are many good ones on the market.  There have been many improvements in pads over the last 10 years, some absorbing up to half a litre of fluid.</div> <bR> <div> 'Pelvic floor' exercises under the guidance of a continence nurse or physiotherapist will help lead to better control. Good bladder habits come with personal training.</div> <bR> <div> Getting used to holding more is another way of personal training. The bladder will expand to hold more if necessary, or if there is a need to restrain.</div> <bR> <div> If all of the above do not work, then what is left?  One solution is the injection of Teflon around the bladder.  Another is the use of a Sphincter pump.  Since the '80s these have been used by about 1% of cases.  By a squeeze method, the device allows the bladder to flow when required. The pump cannot be used when there is an infection or obstruction. The cost is approximately $1800.00.</div> <bR> <div>     Dr Vaux concluded by saying that your Urologist is the best person to</div> <div> decide initially which method is likely to be suitable for you.</div> <bR> <div> John Reid</div> <bR> <bR> <div> #.</div> <bR> <div> 2.    LOOK GOOD FEEL BETTER WORKSHOP: 11 April, 2005</div> <bR> <div>     It was a happy drive home from Mona Vale. The passengers, strangers whom</div> <div> I had collected earlier that morning, were now bonded by a light-hearted</div> <div> high.  The two men with cancer and one of their wives were laughing,</div> <div> carrying goodie bags of gifts and one declared it to be the best time he'd</div> <div> had in ages.  They had just experienced a 'Look Good Feel Better' workshop</div> <div> at Northern Beaches Palliative Care Cottage.</div> <bR> <div>     'Look Good Feel Better' is a free community service program that assists</div> <div> people undergoing treatment for cancer.  The purpose of the program is to</div> <div> help people manage the appearance-related side effects of chemotherapy and</div> <div> radiotherapy, thereby helping to restore appearance and self image.  The</div> <div> program is an initiative of member companies of the Cosmetic, Toiletry and</div> <div> Fragrance Association of Australia who provide, gratis, the quality products</div> <div> that participants use and then take home. Volunteers from the beauty</div> <div> industry donate their skills and time to conduct the workshops.  Since its</div> <div> establishment in 1990 the program has helped over 32,000 women living with</div> <div> cancer in Australia and for much of that time, The Cottage has hosted</div> <div> sessions.</div> <bR> <div>     Does it all sound like "girlie stuff"?  My happy passenger, a weathered</div> <div> product of years on the land, would endorse the fact that it's good for</div> <div> blokes too.  Only recently 'Look Good Feel Better' has extended to men and</div> <div> our memorable morning was the first for them at our Cottage.  The program</div> <div> helps men deal with the side-effects of cancer treatment including skin</div> <div> changes, hair loss, etc.  It stresses sun protection and offers grooming and</div> <div> skin care advice.  And the hats look rather swish.  With all  the pampering</div> <div> attention to the outside, homemade morning tea adds a "feel good" factor to</div> <div> the inside too.</div> <bR> <div>     For further details or if you are interested in attending a workshop,</div> <div> call the program's co-ordinator at The Cottage, Sister Marian Cunneen:</div> <div>                     9998 0801.</div> <bR> <div> Jo-Ann Steeves</div> <bR> <bR> <div> 3.    Sydney Metropolitan Area PCSG Joint Meeting:   3 May, 2005</div> <bR> <div>     To celebrate our third birthday, the Northern Beaches Prostate Cancer</div> <div> Support Group invited members of the organising committees of support groups</div> <div> in the Sydney Metropolitan Area to a ³Get to Know You² meeting at Mona Vale</div> <div> Hospital.  The purpose of the evening was to share experiences in the</div> <div> general running and organisation of groups, and to exchange ideas about the</div> <div> nature and purpose of group activities.</div> <bR> <div>     Twenty three participants, representing the Northern Beaches, Royal</div> <div> North Shore and the San [Sydney Adventist Hospital] Groups, met in the</div> <div> Palliative Care Cottage at the Hospital.  Apologies were received from</div> <div> Groups at Concord and St Vincent¹s Hospitals, and from Con Casey from the</div> <div> Royal North Shore Group, and from Richard Darmopil and Paul and Helen Moore</div> <div> of the Northern Beaches.</div> <bR> <div>     Prostate Cancer Support Groups have been running for at least 10 years</div> <div> in the Sydney Metropolitan area, and in that time they have developed</div> <div> considerably, especially as information about Prostate Cancer has increased</div> <div> and become more</div> <div> [See over]</div> <div> #.</div> <bR> <div>  readily available, both in print and via the Internet.  Even so, all the</div> <div> Groups represented are holding regular educational meetings which are well</div> <div> attended.  At Royal North Shore and the San, medical specialists are readily</div> <div> available on site as speakers.  The Northern Beaches draws its speakers from</div> <div> across the city, Mona Vale being a much smaller Hospital.  Formerly, the San</div> <div> Group drew up a list of topics and speakers each year whom it felt would be</div> <div> of interest to members, but recently it has canvassed members via their</div> <div> newsletter to select topics from a list.  The year¹s program is then</div> <div> organised from the responses.  Increasingly over the years doctors have</div> <div> become aware of and recognised the value of support groups as a</div> <div> supplementary source of information and care for men affected by Prostate</div> <div> Cancer, and all groups have been greatly motivated by the encouragement they</div> <div> receive from the medical profession.</div> <bR> <div>     Northern Beaches and the San Groups both publish information-giving</div> <div> newsletters.  Northern Beaches publishes summaries of monthly talks together</div> <div> with other information which might be of use to members.  This information</div> <div> also appears on the Group¹s website.  The San does the same thing, together</div> <div> with material provided by various medical personnel.  Royal North Shore has</div> <div> ceased publishing an information newsletter because of the amount of</div> <div> material available elsewhere.  However, each month they provide details of</div> <div> their forthcoming activities through CanSupport, - an umbrella support group</div> <div> for all cancer patients.</div> <bR> <div>     It was reported that the Penrith Group has a system of colour-coded name</div> <div> tags for its members.  Each colour represents a particular treatment which</div> <div> the member has received  (for example, red for men who have had a radical</div> <div> prostatectomy!).  Thus it is easy, for new members particularly, to identify</div> <div> those individuals they might want to talk to.</div> <bR> <div>     Meeting times vary from group to group.  At the San, meetings are held</div> <div> monthly both in the afternoon and early evening to cater for both working</div> <div> and retired men..  Meeting times have changed recently at the Royal North</div> <div> Shore from early evening to late afternoon each month.  On the Northern</div> <div> Beaches, monthly meetings are held in the early evening.  At both the Royal</div> <div> North Shore and the San, the Prostate Cancer Groups are part of a larger</div> <div> Cancer Support System, - CanSupport and Jacaranda Lodge respectively.  Both</div> <div> organisations incorporate the Prostate Cancer Support Groups into their</div> <div> general operations and provide a range of financial, clerical and technical</div> <div> support.  For example, at the San, all meetings are video-recorded and tapes</div> <div> are then held in the Jacaranda Lodge Library.  In this way they become</div> <div> available for Sydney and country borrowing.  CanSupport provides counsellor</div> <div> training for Group members who are interested in this role.  These trained</div> <div> men then become the core of a ³buddy system² to whom new members may be</div> <div> referred if they are looking for information on a one-to-one basis.  These</div> <div> courses should be available to other groups on application to CanSupport.</div> <div> Northern Beaches has help from Hope Healthcare through the printing of its</div> <div> newsletter and address labels, provision of postage on the newsletter</div> <div> mail-out, and some financial assistance with catering.</div> <bR> <div>     One Northern Beaches participant reported on a contact he had made with</div> <div> a Support Group located in Devon, England.  Its main purposes were an</div> <div> educational program held every three months, and fundraising to purchase</div> <div> equipment for the hospital to which it was attached.  The Group Leader was</div> <div> the radiation oncologist at the hospital.  As each new Prostate Cancer</div> <div> patient came in on referral, his name was immediately added to the Group¹s</div> <div> mailing list and he was issued with an information package called a ³Tool</div> <div> Kit².  The emphasis on fund raising varied among Sydney Groups.  It was</div> <div> suggested that any fund raising campaign should be directed through the PCFA</div> <div> [Prostate Cancer Foundation of Australia] so that donors could gain a tax</div> <div> [See over]</div> <div> #.</div> <bR> <div> exemption for donations of $2.00 or more.  Money received by the Foundation</div> <div> would be earmarked for the particular group.  It was also pointed out that</div> <div> groups could apply to the Foundation for grants to assist with their</div> <div> administrative expenses.</div> <bR> <div>     Accommodation available for groups varies somewhat.  Northern Beaches</div> <div> holds its meetings in an L-shaped room in the Palliative Care Cottage of</div> <div> Mona Vale Hospital.   Group members appreciate the welcoming and friendly</div> <div> environment.  The San Group meets in the comfortable surroundings of</div> <div> Jacaranda Lodge, which is a hostel for any cancer patients attending the</div> <div> hospital for treatment, and for their immediate family.  The Royal North</div> <div> Shore Group has recently moved from Rotary House to the Radiation Oncology</div> <div> Conference Room, which is rather difficult to find in the Hospital labyrinth</div> <div> of buildings and is less satisfactory.</div> <bR> <div>      Carer support also varies from group to group.  Carers attend meetings</div> <div> with their partners at all three groups represented.  At the San, carers</div> <div> will usually separate from the men after the first part of the meetings to</div> <div> hold a session on their own for about half an hour, then returning for the</div> <div> close of the meeting.  It was felt that partners gained a great deal by</div> <div> having time on their own to ask questions, discuss issues and release</div> <div> feelings that they were unable to do in the mixed group.  The Northern</div> <div> Beaches Group had run special meetings for carers every two months but,</div> <div> because of poor attendance, this was abandoned after about 12 months.</div> <div> Partners continue to attend the monthly meetings.  There is no special</div> <div> program for carers at the Royal North Shore.</div> <bR> <div>     The way in which groups organised themselves in terms of committees, and</div> <div> the role of group leaders, was not discussed in any great detail.  This</div> <div> might be considered on a further occasion.</div> <bR> <div>     The meeting concluded at 8.30pm and participants stayed talking over</div> <div> light refreshments for another 45 minutes.  It was agreed that the evening</div> <div> had been a valuable exchange of ideas and experiences, and that it might be</div> <div> repeated on some future occasion.</div> <bR> <bR> <div> 4.        INFORMATION  UPDATE</div> <bR> <bR> <div> a.    Andrology Australia [The Australian Centre of Excellence in Male</div> <div> Reproductive Health] has released its Annual Report, 2004.  This is</div> <div> available for borrowing from the Group¹s Library.</div> <bR> <div>     Issue 14 [Autumn 2005] of The Healthy Male is now in the Library.  This</div> <div> issue focuses on men¹s sexual difficulties.</div> <bR> <div>     Andrology Australia is also a major participant in International Men¹s</div> <div> Health Week, running from 13-19 June.  Watch for details in the media.</div> <bR> <bR> <div> b.    Publications Received</div> <div>     Prostate News, Issue 21, March 2005.  Prostate Cancer Foundation of</div> <div> Australia.</div> <div>     Prostate Cancer Support Group, May/June 2005.  Cancer Support Centre,</div> <div> Sydney Adventist Hospital.</div> <div>     Queensland Prostate Cancer News, May. 2005.</div> <bR> <div> All contain interesting up-to-date material, and all are available from our</div> <div> Lending Library.</div> <bR> <div> #.</div> <bR> <div> c.    Fundraising Dinner        The Roseville RSL is holding a fundraising</div> <div> dinner at its premises at 7.00pm on Saturday, 18 June.  It hopes to raise</div> <div> $15 000.00 for the Prostate Cancer Foundation.  The cost is $60.00 per head,</div> <div> and there will be entertainment, a raffle and auction.  It would be great if</div> <div> our Group could make up a table.  Please let me know ASAP if you are able to</div> <div> attend.</div> <bR> <div> d.    Treatment Issues</div> <div>     i]    ABC News on Line [20 May] released information about hormone</div> <div> therapy using the drug goserelin for six months, followed by radio-therapy.</div> <div> It is claimed that the treatment reduces the chance of Prostate Cancer</div> <div> recurrence by 60%.  A small capsule is inserted painlessly in the abdomen.</div> <div> Its function is to block the production of testosterone and another male</div> <div> hormone androgen.  The treatment does not cure the cancer but slows its</div> <div> growth, and reduces by as much as one third the chance of spread around the</div> <div> body.</div> <bR> <div>     ii]    Taxotere [not yet listed on the PBS] is currently being</div> <div> recommended as an alternative to Mitozantrone in the treatment of advanced</div> <div> prostate cancer, especially for those men no longer responding to hormone</div> <div> therapy.  Most health funds will pay for Taxotere, though it is not yet</div> <div> subsidised.</div> <bR> <div>     iii]    The Cancer Institute NSW has announced that it will provide</div> <div> $3.75 million to fund research to help develop new Prostate Cancer screening</div> <div> tests and treatment drugs, to examine the key gene defects linked to</div> <div> Prostate Cancer so as to assess the risk of developing and dying from the</div> <div> disease, and to set up a Prostate Cancer Taskforce to review clinical</div> <div> practices.</div> <div>     ³Prostate Cancer will be the most common cancer in NSW by 2011,</div> <div> affecting 1 in 3 men and accounting for 16 % of all cancers diagnosed².  The</div> <div> incidence is expected to increase by 69%;  that is, by 2011, 6800 men will</div> <div> be diagnosed, compared with 4000 in 2002.</div> <bR> <div> e.    ŒSurviving Cancer¹ Course</div> <div>     The course explores some of the issues that arise after people finish</div> <div> treatment and are currently cancer free, - and for those who care for them.</div> <div> It treats issues sensitively through presentations, voluntary interaction</div> <div> and discussion over four sessions, 6.30 - 8.30pm, from 23 June to 14 July.</div> <div> Venue:  Sydney University.  Cost, $195.00.  See accompanying flyer.</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>