NEWSLETTER
No.48 August, 2006
Editor: John Conroy
1. COMING EVENTS
(Meetings are normally held (unless otherwise advertised) at 6.30 pm on the first Tuesday of each month in the Palliative Care Cottage, Mona Vale Hospital)
Tuesday, I August (The Horses' Birthday)
Ms Joanna Harnett (Northern Beaches Care Centre) Healthy Eating? - Healthy Living!
At the March meeting, Dr Stephen Ginsborg spoke to us about complementary therapies and emphasised the importance of a healthy lifestyle. The May Issue of the PCFA Prostate News also published Part I of a series on The Role of Diet and Dietary Supplements. This month we are picking up on this vital issue of healthy living. Joanna Harnett has spoken to us on two previous occasions. Each time she has given us some very sound, very useful and very practical information and ideas. We are pleased to welcome her back again to talk about the importance of maintaining our health through what we eat and how we live.
Tuesday, 5 September
Sr Diana van der Saag (Nurse Co-ordinator - Prostate Cancer, Cansupport, Royal North Shore Hospital) The Role of the Prostate Cancer Nurse Co-ordinator and Dr E. M. Lazzaro (Urologist): Chemotherapy and Prostate Cancer
2. Report of the Meeting held on Tuesday, 4 July
We welcomed Don Jenson as a new member to the Group. Apologies were received from: Paul Collins, Una Conroy, Geoff Emanuel, Mary Jones, Ernie and Freda Treloar, Peter van Wensveen and Barry West.
This month's program was a Members¹ Open Forum when Members had the opportunity to spend the evening sharing information and experiences among themselves. This is the second year we have run a session of this kind.
Members broke into three groups based on the kind of treatment they had received (radiation therapy, radical prostatectomy, hormone therapy) plus a fourth, carers group. Hormone therapy was the most numerous group, followed by the carers. The three treatment groups were given a set of questions as a rough guide to start their discussions:
How helpful was the information given to you before your treatment began?
What have you found was helpful during treatment?
What did you find was helpful after treatment?
How satisfied were you with your treatment?
How satisfied were you with your medical care?
What side effects did you have?
What information were you given about side effects?
What advice and medical help were you given about handling side effects?
What other problems, questions, or issues are important to you?
Each group could start where it liked and was free to ignore the questions altogether if it wished.
The radiation therapy group (of two) were equally divided on the value of information given prior to treatment. One, who had his treatment ten years ago in the UK, had found it not a lot of use; the other, treated more recently here in Sydney, thought it was good and very helpful. Support during treatment came from family and friends and from the local G.P. Both were very satisfied with their treatment and found the follow-up PSA tests useful. Follow-up medical care was less satisfactory. Both were given lots of information about possible side effects of treatment, and while one suffered subsequent incontinence, neither was given any medical advice or help about handling side effects. Current concerns are about ongoing PSA tests and rising PSA.
The radical prostatectomy group spent their time discussing complementary therapies and various herbal remedies. Their concerns were in watching PSA levels.
Amongst the group who were undergoing hormone therapy, the consensus seemed to be that very little helpful information had been given before treatment was begun, and little medical help during treatment. However, on the whole, they were satisfied with the treatment and found it effective. On the other hand, they were not satisfied with the narrowness of the medical professionals' interest. A range of side effects had been experienced: hot flushes, osteoporosis, weight gain and effect on muscle mass. The amount of information that had been given about side effects was variable. Not a lot of advice and medical help had been given about handling side effects.
The carers group also looked at the nine questions. They reported that the information given them before their partners' treatment began was confusing. What was most helpful to them during treatment was being able to go to a support group and share with others. Apart from feeling relief, the group was not sure what they found helpful after treatment. Satisfaction with treatment varied from doubtful to reasonable, while for some it was ongoing. on the other hand, satisfaction with subsequent medical care varied from excellent to terrible and anywhere in between. The carers then went on to consider some other aspects of their circumstances. These included the varying ways in which men and women approach and handle different situations, their different coping skills and their differing attitudes towards a range of outcomes of Prostate Cancer and its treatment side effects. As a group they needed privacy and total frankness - and time to chat.
All four groups found the session valuable and would like to have the exercise included at least twice in the year's program. The carers would certainly like to see the Carers Group restored.
3. DRINKING POMEGRANATE JUICE OCAN SLOW PROSTATE CANCER. (BBC News item, July, 2006.)
According to this news item, researchers at the University of California, Los Angeles reported in the Journal of Clinical Cancer Research a study which showed that "drinking a daily eight ounce glass of pomegranate juice can significantly slow the progress of prostate cancer". Apparently, pomegranates contain a cocktail of chemicals which minimise cell damage, and potentially kill off cancer cells.
A study had been made of 50 men who had undergone either radical prostatectomy or radiation therapy but who showed signs that their disease was returning rapidly. Patients who drank pomegranate juice had their PSA doubling time increased from the average of about 15 months to an average of 54 months. Some men who drank the juice but received no other treatment, continued to show suppressed PSA levels after more than three years.
Pomegranate juice has anti-inflammatory effects and contains high levels of anti-oxidants which are believed to protect the body from damage by ... free radicals. It also contains isoflavones which are believed to play a role in cancer cell death. The leading researcher in the study, Dr Allan Pantuck said: "We don't know if it's one magic bullet or the combination of everything we know is in this juice". He went on to say: "In older men 65 to 70 who have been treated for prostate cancer, we can give them pomegranate juice and it may be possible for them to outlive their risk of dying from their cancer. We are hoping we may be able to prevent or delay the need for other therapies used in this population such as hormone treatment or chemotherapy, both of which bring with them harmful side effects". This view was supported by Dr Laura-Jane Armstrong of the charity Cancer Research UK.
Chris Hiley, of the (UK) Prostate Cancer Charity said: "It might also help as a reassuring low-key intervention for men whose cancer is being monitored rather than treated".
Health food and other stores on the Peninsula don't seem to supply pomegranate juice. Has anybody out there managed to track it down? Please let us know. A Google search by one of our members came up with one internet supplier: ClubNatural in California. You can order both pomegranate capsules (retail price: $19.99; sale price: $9.99) and pomegranate juice from this supplier.
4. NORTHERN BEACHES SUPPORT GROUP ORGANISATION REPORT
At a meeting held on Monday, 10 July, to consider the future structure of the Group, it was recommended that a committee should be set up to help in running the Group. The proposed composition and interim office bearers were:
Convener/Group Leader John Conroy
Newsletter Editor Mark Tweeddale
Treasurer John Reid
Length of tenure and timing of elections are yet to be discussed. Other positions needing to be filled are:
Auditor
Publicity Co-ordinator
Librarian
Carers Co-ordinator
Anyone who is willing to take on one of these positions for the time being, please contact John Conroy on 9918 9358.
The annual program will be arranged by the organising committee in September/October of each year. Individual members of the Committee will contact and invite selected speakers, introduce them to the meeting, and write the usual thank you letters.
Individual members will be invited to set up the Cottage on a rotation basis for meetings and to put away and tidy up afterwards. Because of the need for the security of the Palliative Care records and equipment, it is necessary for one or a few persons to be responsible for the security of the building at the end of meetings.
The Committee will meet again on Monday, 11 September.
5. PCFA
i) Inaugural PCFA Men¹s Health Promotion Conference:
Saturday, 12 August, Victoria University Conference Centre, Level 12, 300 Flinders Street, Melbourne, Vic. Cost: $50 for delegates with a chronic medical condition, and for carers and family members.
Further Information: Phone: 03 9419 6222
ii) Recent Changes
The Foundation has moved offices to Level 3, 51-53 Chandos Street, St Leonards, 2065. The mailing address remains the same at PO Box 1332, Lane Cove, 1595, as does the Freecall number: 1800 22 00 99.
Two new staff members have been appointed: Sue McGrath, assisting full time with co-ordination of projects, and Wendy Farrow assisting part time with co-ordination and management of the NSW Board. Sue Clifford has also recently been appointed as Marketing Assistant in the Melbourne Office.
The full organisational structure of the Foundation is as follows:
National Board CEO
Finance, Audit & Public Awareness & Support & State Governance 'tee Education' tee Advocacy 'tee Boards' State Chapters The Foundation's Staff structure comprises:
CEO
Executive Administration Telemarketing Treasurer Marketing
......
Assistant Assistants (2) Assistant Assistant
National Partnerships Support & Development Officer Advocacy Officer Officer
iii) Fathers Day 5
All the fun of the fair!
The Foundation is organising a Fathers Day 5 kilometer Fun Run at Sydney Olympic Park on Sunday, 3 September from 10.00 am to 1.00 pm. Fun for the whole family - runners, walkers, observers. Prizes for a wide range of categories.
iv) NSW Support and Advocacy Teleconference
Minutes of the teleconference of NSW Support Groups held on Thursday, 19 July and reports from other NSW Support Groups are available for perusal by members. Contact John Conroy: 9918 9358.
v) Websites
The PCFA is redeveloping its website. If you are aware of any good websites on Prostate Cancer or related issues, either in Australia or internationally, please send the addresses to Andrew Giles at: agiles@prostate.org.au who will review them and, if appropriate, link them to the Foundation's website.
6. CANCER COUNCIL NSW
One function we can fulfil as cancer 'consumers' is to become advocates for matters that are of real concern to us in the public arena. The Cancer Council will be repeating its Consumer Advocacy Training (CAT) Course on two occasions in the second half of this year. The Course provides participants with knowledge and skills useful in advocacy work in relation to cancer, and also for wider application.
The dates and location are:
13 - 14 October Parramatta
17 - 18 November Gosford
The Council may provide financial assistance for those wishing to attend.
For further information, contact:
Kelly Williams
Advocacy Development and Networks Officer
The Cancer Council NSW
153 Dowling Street
Wooloomooloo NSW 2011
Phone: 9334 1748 Mobile: 0402 203 277 Fax: 9326 9328
7. RESEARCH
The June 2006 issue of ASSERT (NSW), Newsletter of the Australian Society of Sex Educators, Research and Sex Therapists, has an article on research being undertaken at Sydney University by Maria Caetano. Maria is currently recruiting couples who have been together for 15 years or more who would like to participate. Please contact ASSERT NSW on 9280 0151 if you are interested in participating.
8. INFORMATION UPDATE
Publications Received Copies of all of the following are available for borrowing from our Lending Library.
(i) 2005 at a glance. Andrology Australia, Report.
A brief summary of the organisation's work during 2005.
(ii) Volunteer Voice. The Cancer Council, NSW. Winter Edition June, 2006
(iii) Local News. The Cancer Council, NSW. Winter Edition June, 2006
(iv) cancer voices nsw. Newsletter 23. Cancer Voices NSW June, 2006.
(v) Healthy Eating. Fact Sheet. Garvan Institute.
(vi) Prostate Cancer. Fact Sheet. Garvan Institute.
(vii) breakthrough. Garvan Newsletter, Issue 01. Garvan Institute. March, 2006
(viii) Prostate Cancer Support Group. Cancer Support Centre, Sydney Adventist Hospital. July, 2006.
Other Publications
Past copies of Queensland Prostate Cancer News, the monthlty newsletter of the Queensland Chapter of the PCFA, can be accessed at:
The July edition contains a report of a presentation by Peter Dornan, AM on: Incontinence: An Agressive Approach to Treatment.
YOUR CONTACT NUMBERS
Program Co-ordinator
Dr Peter Moore
Northern Beaches Palliative Care
9997 3555
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Group Leader
John Conroy
9918 9358
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NSW Cancer Council Cancer Support Helpline
13 11 20
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Prostate Cancer Foundation of Australia
1800 220 099
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