November 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>November 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><FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> <B>No. 29. November, 2004</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> <B>1. COMING EVENTS</B><FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> a) 6.30 pm, Tuesday, 2 November David Smith (NSW Cancer Council): Prostate Cancer Research at the Cancer Council NSW. David spoke to our Group in March, 2003 and now returns to give us an update on work in progress. His talk will include the following topics:<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> * Two new studies starting in NSW to investigate the causes of Prostate Cancer.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> * A new study to look at attitudes, behaviours, decision-making and consequences of being tested for Prostate Cancer with the PSA test.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> * Progress and some very preliminary results from the Prostate Cancer Outcomes Study<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> * A new arm to the Prostate Cancer Outcomes Study looking at the trade-offs men make when deciding about which treatment to have.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> * A brief overview of the recent Prostate Cancer Call-in.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> b) 6.30 pm, Tuesday, 7 December Christmas Get-Together, a chance to get together for a relaxed evening with wives, partners, family and friends for a smorgasbord supper with first class eats, - and a few seasonal toddies. Bring along a mate who hasn't been to one of our meetings before. RSVP. (Meetings are held at 6.30 pm on the first Tuesday of each month in the Palliative Care Cottage, Mona Vale Hospital)<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> All friends, partners, carers, and family members are welcome. Refreshments will be served.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> <B>2. REPORT OF THE MEETING HELD ON:</B> Tuesday, 5 October.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> a. Apologies were received from Robin Casson, Jack and Merryl Godfrey, Paul and Helen Moore, Freda Treloar and Wallis West.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> We welcomed partners of two members attending for the first time: Mary Jones and Cathy Woodward.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> b. We were very pleased to welcome as our speaker Sr Jane Matthews. Sr Matthews has been working for 14 years as a registered nurse in private practice with Associate Professor Philip Stricker. A nurse involvement in the practice is relatively new. Previously, she had been second in charge in a urological ward. When Jane first started with Professor Stricker, the work was mainly general urology. It then shifted to sexual dysfunction, and then to Prostate Cancer. Patients usually make contact through a mobile phone to reach her directly or to reach Dr Stricker. Philip Stricker has probably the largest cohort of patients in NSW, - over 1 000.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> Jane has seen great changes over the years, especially in relation to Prostate Cancer. One particular area is screening, but there is still a long way to go, as Prostate Cancer is well behind Breast Cancer in this respect. There have also been developments in the direction of prevention; for example, the interest in selenium and lycopene. Biopsies are now taken under a light anaesthetic. Formerly, radiation therapy was largely by external beam radiation, with little or no brachytherapy. There have been great changes, too, in the surgical area, where Jane's main role occurs, - especially in relation to urological matters, - although she does see brachytherapy patients as well. Recent developments in surgery include laproscopy (keyhole surgery) and robotic surgery - the probable future direction for prostate surgery. Chemo-therapy did not have much place to start with, though there is now a need for this in relation to Advanced Prostate Cancer. More is being learned about the side effects of hormone therapy, especially concerning osteoporosis. Jane Matthews emphasised that she was speaking on all these matters from the point of view of the work being done by Philip Stricker and the St Vincent's team.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> Jane then spoke in some detail about her own work. She usually sees each radical prostatectomy patient before his surgery, spending about one hour with him. This is done preferably with the patient's partner present, which is more beneficial as the patient, after hearing the initial pronouncement, doesn't always hear what is being said. These interviews are normally not on the same day that the patient sees Dr Stricker, because this can lead to an information overload.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> So, what does Jane cover in the interviews? She will first talk a little about the anatomy surrounding the Prostate in case there are things that have been missed. Next she will say something about the time taken for the surgery (information also given to the partner) and the time frame in hospital, - usually about four to seven days. This is the normal time for the catheter to stay in place, after which the patient can go home without it. A catheter will also be used for brachytherapy patients, and will be in place for about 36 hours. There is usually no need for physiotherapy anymore, unless the patient has a chest problem. Nor is there a need, generally, for pelvic floor exercise. (This boils down to the technique of the surgeon.) Jane will explain the use of surgical stockings to prevent blood clots, and the shaving of pubic hair prior to the operation. The need for dieting has been stopped whereas, previously, this would take place for 12 months before surgery. She will explain that Philip Stricker will see the patient the night before the operation. He also makes a point of seeing the man's partner immediately afterwards. All this information is given to the patient and his partner to alleviate anxiety. The amount of information given varies to avoid confusing the patient, and varies also with the individual doctor. Finally, St Vincent's plans that, in future, for each patient, the urologist, radiation therapist and oncologist will all be brought together at the treatment planning stage.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> Jane will then cover what happens after the surgery. (St Vincent's also publishes a booklet telling the patient what to expect day by day.) She will describe the normal recovery period and the affect of the anaesthetics. Drips and drains will normally be out after 18 hours. There will be no stitches to be removed as these will dissolve. Sometimes air bags will be used on the legs, but the chance of blood clotting is low. St Vincent's has stopped the use of push-button pain killers from the start of this year. Morphine sometimes causes itching and nausea, and it was found that many men were not using the devices. She will advise no strenuous exercise for six weeks, and the continued use of the stockings for four weeks - and for up to three to six months if the patient plans any plane flights. She also recommends regular walks, and there should be a slow increase in activity after six weeks, but your body usually tells you what you can and can't do. If you are an office worker, you will need to take three to four weeks off, but if you do physical work, you will need about six weeks off. Generally there are few problems because the men have been well informed.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> Information is usually given to explain the process with catheters because there can be some anxiety about them. Before surgery, the patient is shown how they work. Continence is also a concern. The chance of incontinence after surgery is about 1.5%. A man is considered to be incontinent if he needs to wear one to two pads per day over a period lasting for a year. Some patients may discard pads after a week, some after several months, some after a year. If incontinence is still a bother after a year, then intervention will be necessary. One form of treatment is to inject collagen (as used for lips) to close over the urethra. Another method, which has been on trial over about the last 12 months, is an overnight procedure to insert a bladder on either side of the urethra. Also, some men may have leakage due to stress. For others, a problem may have been present before surgery. More aggressive cancers may also be a cause of incontinence. The condition is probably most common with older men, which is one reason why surgeons don't operate on men over 70 years of age. However, some younger patients in their 40s have had incontinence problems. These men usually had been bad bed wetters up until the age of 18 or 20; hence it took them a longer time to regain continence.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> Building up pelvic floor muscles should be done slowly. Some doctors don't start for six weeks after the catheter is out; this varies with the surgeon. Strong pelvic floor muscles are a help in controlling incontinence, although the muscles themselves are not touched during surgery.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> Jane doesn't have a lot of contact with brachytherapy patients, and certainly doesn't see many with incontinence problems. Some of these men may get urethral strictures (a slowing of the flow) after several years, caused by scarring. This is checked by a flow test, and can be fixed by a cut. Patients can also be taught to insert a catheter, and eventually the urethra will open up.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> Several things can lead to leakage, such as afternoon fatigue leakage five to six weeks after the operation, or standing up after sitting. Leakage can also be aggravated by tea, coffee, alcohol or coke. Breaking wind, coughing, sneezing or sudden exertion can often cause squirting. A feeling of urgency can be due to bladder instability.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> Tablets, or pelvic floor exercises can ease some of these problems. Panadol can help if you experience pain when urinating. Jane also gives information to patients on different types of pads available on the market for men. The practicalities are not so good, as there are not many pads suitable for pouches. If you need to wear a pad, jockey shorts are essential, not boxers.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> Sexual potency after surgery depends on nerve sparing. There is no 100% guarantee of success, and only a 50% chance of sexual function coming back normally. With a good surgeon the rate can be pushed up to 80-90%, but as well as preserving the nerves, success also depends on the man's age and what his erections were like before the operation. It may also depend on anatomy, - the closeness of the nerves to the prostate. Return of sexual function can take anywhere from six to 12 moths or up to two years. It is variable and gradual and erections may fluctuate. Injections, and drugs like Viagra, Cialis and Levitra are helpful, but they should be taken regularly, - once or twice a week, - as this helps open up the blood vessels in the penis. However, drugs are of no use if the nerves have not been spared. Other alternatives can then be used, like implants or vacuum pumps.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> For some men it may be that sexual function never comes back quite as it was before. It will become the number one issue at some time down the track. It is bigger for some men than for others. (No pun intended!) It may be a concern for the partner, but for her it may not be the top priority. She is just pleased her man has come through the treatment. There are counsellors available if there are relationship difficulties. This year, a number of men in their 40s have been treated and for them there is a better than 65-90% chance of getting back to what they were. Fatigue or stress after the operation may have an affect, and there can be a psychological effect influencing performance. With low dose (seed) brachytherapy there are much greater rates of potency problems, with long term results of a 50% chance of sexual difficulties.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> Jan concluded by talking about the Prostate Cancer Support Group at St Vincent's. It meets four times a year, and sees its main function as education. This appears to meet the demands of members. Only a small percentage of Professor Stricker's patients have been to a support group before they come to him. They may be referred to a recent patient for information, and so support is more through individuals than through the group. Professor Stricker Is about to set up a Prostate Cancer Centre and also a Sexual Dysfunction Centre at St Vincents. Money is now available to complete the plan for a public awareness campaign in the near future.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> <B>3. INFORMATION UPDATE</B><FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> a.) Publications received. The following Newsletters have been received from other Groups and Organisations and are available through our Lending Library:<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> * Prosupport, September & October, 2004. Newsletter of the Royal North Shore Prostate Cancer Support and Information Group<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> * Prostate News, Issue 19, September, 2004. Newsletter of the Prostate Cancer Foundation of Australia<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> * The Word Is Out, Volume 3, Issue 4, Spring, 2004. Cancer Support Centre - Jacaranda Lodge Newsletter, Sydney Adventist Hospital<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> * Prostate Cancer Support Group Newsletter, September, 2004. Cancer Support Centre, Jacaranda Lodge, Sydney Adventist Hospital<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> * Cancer Voices News, September, 2004. Newsletter of Cancer Voices NSW<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> b.) Research. The Northern Beaches Prostate Cancer Support Group has participated in two research projects during the past month:<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> * An evaluation of needs of cancer support group leaders in NSW undertaken by the Medical Psychology Research Unit, the University of Sydney<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> * Trade-offs men make when deciding about which treatment to have, a new arm to the Prostate Cancer Outcomes Study undertaken by the Cancer Council, NSW<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> c.) Our Website. www.nbprostatesupport.com.au<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> If you have any comments or suggestions, please contact us by e-mail or phone.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> d.) Newsletter by e-mail<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> If you would like to receive your regular copy of the Newsletter by e-mail (and so help cut the postage bill, currently covered by Hope Healthcare), please let me know by e-mail at: <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><FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> e.) Donation<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> At their Annual General Meeting on Thursday, 14 October, the Manly-Warringah Division of the Master Builders Association presented our Group Leader with a cheque for $18 000. This was the result of the Association's Golf Day in July. We are deeply grateful to the Association for its contribution to our cause, and are especially appreciative of the enormous efforts of our Member, John Reid, who did so much on our behalf to persuade the Master Builders to take on our Group as the object of its fund-raising for 2004.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> f. Bladder Management<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> For assistance with bladder management problems see your doctor, physiotherapist, continence nurse advisor, community health worker or a nurse.<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> You can also ring the National Continence Helpline on Freecall 1800 33 00 66 or visit <FONT SIZE="3" COLOR="#0000FF" FACE="Tahoma" ><A HREF="http://www.continence.health.gov.au" TARGET="_top" TITLE="http://www.continence.health.gov.au"><U><B><U>www.continence.health.gov.au</U></B></U></A></FONT> or <FONT SIZE="3" COLOR="#0000FF" FACE="Tahoma" ><A HREF="http://www.toiletmap.gov.au" TARGET="_top" TITLE="http://www.toiletmap.gov.au"><U><B><U>www.toiletmap.gov.au</U></B></U></A></FONT> (From the Department of Health and Ageing)<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> g. Complementary Therapies<FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> For members interested in complementary therapies, there is a free seminar on: Integrating Chinese Herbs into Western Practice by Naturopath and Medical Herbalist Paul Keogh. This will take place at 6.30pm on Wednesday, 17 November at the Crows Nest Centre, Ernest Place, Crows Nest, 2065. If you are interested and wish to register, phone: Toll free 1800 822 922 or e-mail <FONT SIZE="3" COLOR="#0000FF" FACE="Tahoma" ><A HREF="http://cust.serv@phytomedicine.com.au" TARGET="_top" TITLE="http://cust.serv@phytomedicine.com.au"><U><B><U>cust.serv@phytomedicine.com.au</U></B></U></A></FONT><FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> h. Telephone Counselling Cancer Council NSW/Cancer Connect is seeking men in their 50s and early 60s, who have been treated for prostate cancer, to train as phone counsellors for:newly diagnosed men seeking first hand information from those with experiences in the various treatments for PCa or men who have difficulty in managing their side effects from treatment including hormone treatment. Many men prefer to speak to men in their own age group so the continuing recruitment of recently treated patients / survivors is being sought. Training would take place in early 2005. Location & timing of the training will be to suit those still working. Contact Sally Carveth, Phone: 02 9334 1900 (CCNSW switch) E-mail: <FONT SIZE="3" COLOR="#0000FF" FACE="Tahoma" ><A HREF="mailto:sallyc@nswcc.org.au" TARGET="_top" TITLE="mailto:sallyc@nswcc.org.au"><U><U>sallyc@nswcc.org.au</U></U></A></FONT><FONT SIZE="3" COLOR="#000000" FACE="Arial" > </FONT></div> <bR> <div> Please note: During meetings, all discussion and comment about our individual circumstances and experiences is confidential and should not be repeated outside the Cottage walls!</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>