No.2. June, 2002

1. REPORT OF THE FIRST MEETING: Tuesday, 7 May

Sixteen men, mostly from the Northern Beaches, and most of whom were prostate cancer patients, gathered at the Palliative Care Cottage, Mona Vale Hospital on Tuesday, 7 May to hear three speakers address the first meeting of the Northern Beaches Prostate Cancer Support Group.

2. PALLIATIVE CARE: Dr Michael Barbato

Dr Michael Barbato of the Hospital's Palliative Care Unit outlined the nature of palliative care and some misconceptions surrounding it. The Unit was established by Dr John Doran, a Northern Beaches practitioner, in 1989. It consists of a team of doctors, nurses, counsellors and social workers working with other medical specialists (for example, surgeons, oncologists, radiation therapists), to help patients get the best out of life through the management of pain and control of disease. Morphine is the best and safest drug for use in pain control, but some patients are sometimes afraid of being given it for fear of becoming addicted. This would be highly unlikely unless the drug were given intravenously. A more usual consequence would be constipation. Palliative care is not just disease focused; it extends to all dimensions of the patient's being, psychological as well as physical, and includes the welfare of their families also.

3. PROSTATE CANCER FOUNDATION OF AUSTRALIA: Mr Con Casey

Mr Con Casey from the Australian Prostate Cancer Foundation recalled how the Foundation resulted from a merger in 1999 of the Association of Prostate Cancer Support Groups (set up in 1998) and the Prostate Cancer Research Foundation which had been established under the driving force of the television presenter, Roger Climpson, in 1996. The present Foundation has two arms: an Advocacy Committee, which is a lobby group to the government to encourage informed decision making about treatment of prostate cancer and holds an Australia-wide teleconference every second month; and a group to raise funds to enable research and to set up discussion groups across the nation. The first national conference for delegates from support groups in all states and territories was held in mid-2001. In January, 2002, the foundation awarded an inaugural post doctoral fellowship to Dr Susan Henshall of the Garvan Institute of Medical Research to fund a three-year study into prostate cancer diagnosis. The Foundation works closely with Cancer Councils across the nation, as well as with other groups, such as the Lions Club.

4. FACTS ABOUT PROSTATE CANCER: Dr Ken Vaux

Dr Ken Vaux, urologist, who has consulting rooms in Mona Vale, spoke about the diagnosis and treatment of prostate cancer. Some 12 500 men are diagnosed annually with the disease, and there are about 2 500 deaths each year attributable to prostate cancer. The cancer appears in two forms: localised, which may be curable, and advanced, for which control is sought. It may be identified via a Prostate Specific Antigen (PSA) blood test, by rectal examination, by biopsy, or by its spread to other parts of the body. Localised prostate cancer is that confined to the prostate capsule itself, or affecting the seminal vesicles via the ejaculatory duct or affecting adjacent organs. A distant cancer would be one that had spread to the bones or lymph nodes. The form of treatment will depend on the stage and grade of the disease, the age of the patient, the patient's own preference, and the presence of any other illnesses. Staging is determined by PSA testing, digital rectal examination, CT scan, MRI examination, or by bone scan. Treatment for cancer localised to the prostate, may be by observation with regular review, by surgery, or by some form of radiation therapy. Increase in the PSA score can be caused by enlargement of the prostate gland, by prostatitis or by a cancer. Grading is determined by the Gleason score, which is a guide as to how the cancer will behave. Treatment for localised prostate cancer may include observation only with regular review, radical prostatectomy which may have side effects of impotence or incontinence, radiation therapy which maybe by radiation therapy, or Brachytherapy Advanced cancer of the prostate is usually treated by palliation only, which may include surgery or some form of chemotherapy. Some current issues raised included arguments concerning early versus late treatment, the value of PSA screening, external radiation therapy versus Brachytherapy, and new chemotherapies. Most of these are the subject of ongoing research. Questions from the audience related to treatment for enlargement of the prostate gland, and on the relation between the early treatment of prostate cancer and survival rates.

At the end of the meeting, those present elected that the Group should affiliate with the Prostate Cancer Foundation of Australia (PCFA).This has since been done. See the report below.

6. MEMBERS' SURVEY

At our first meeting, we conducted a brief survey about members' interests and preferences. Here is what you told us:

In the section headed Education, 86% of those responding said they would like meetings to provide information on treatment options and their side effects, and the same proportion would like information about diet and nutrition. 71% said they would like to hear about the place of complementary therapies and their benefits.

Under the heading Mutual support, all those who completed the survey said they would like the Group to be a place where they can learn from each other's experiences - both practical tips and coping strategies. In addition, 71% said they hoped the members of the Group would provide encouragement for each other. A further 57% hoped the Group would be a safe environment where they could tell their stories.

7. AFFILIATION WITH PCFA

Our Group is now affiliated with the Prostate Cancer Foundation of Australia (PCFA). This means that we will receive regular information and publications from the Foundation, participate in its activities, and be able to send delegates to its gatherings. I will keep you in touch, via the Newsletter, with all the news that comes my way.

You may have seen Channel 9's program: The Cutting Edge on Sunday evening, 12 May, which looked at some of the debates about diagnosing and treating prostate cancer. Whether you did or whether you didn't, if you would like a copy of the transcript of the program, please get in touch with John Conroy.

During the past month our Group has been approached to participate in two research studies. The first is a survey of Prostate Cancer Support Groups being conducted by the PCFA in conjunction with the University of Queensland to establish the effectiveness of services currently provided by support groups.

The second is a joint effort of the University of Sydney, the University of Western Sydney, and Westmead Hospital. It is a more general survey of the role and effectiveness of support groups for people with cancer. Our group may be invited to participate further in the second stage of this study. Some members of the Group may be invited to be interviewed about the Group's activities. I will keep you informed of progress.

10. USEFUL WEB SITES

If any member has some suggestions about web sites they have found particularly useful, please let us have their addresses and we will publish them here.

11. NEWSLETTER PUBLICATION

We would like our Newsletter to be a real eye-catcher! Is there a computer buff among our members who has desktop publishing skills and a little free time once a month to exercise them? If so, please get in touch with John Conroy on the number below.

12. REMINDER: Date of the next meeting

The Group's next meeting is set for Tuesday, 4 June at 6.30 pm in the Palliative Care Cottage, Mona Vale Hospital. Dr Harvey Alexander, urologist, from the Royal North Shore Hospital, will talk on: Coming to Terms with Prostate Cancer - Treatments and Decision-making. Please be sure to come along and bring your friends, partners, carers, family. The more people who know about us and the more who know about the nature and incidence of prostate cancer the better. And the more we have at the meetings, the merrier it will be!

Unfortunately, Dr Rosie King will not be able to speak on the subject of Sexuality and Intimacy at the meeting to be held on Tuesday, 2 July, at 6.30 pm. The alternative speaker and topic will be announced at the June meeting and in the next Newsletter.... We are hoping to have Dr King talk to us later in the year when she returns from overseas.

13. YOUR COMMITTEE

At the May meeting, two members volunteered their services to form a small working group to plan the development of the Group. We shall get together during June, so watch out for bigger and better things in the future!

14. Members' phone numbers

In our survey, members were asked if they would be prepared to have their phone numbers published in the Newsletter so that others in the Group could contact them. The following members agreed to this. If others would be happy with this arrangement, please let John Conroy know.

Also, please let us know if there are any wrong numbers!

Name	Phone number	Name	Phone number
BUGGLE, Albert	9400 9651	McLEAN, Bill	9997 5639
DARMOPIL, Richard	9999 3434	OWEN, David	9918 9426
HALLIDAY, Lex	9999 3070	REID, John	9913 8836
HUGHES, Tony	9974 5079

YOUR CONTACT NUMBERS

Program Co-ordinator Dr Peter Moore Northern Beaches Palliative Care 9997 3555	Group Leader John Conroy 9918 9358 conroyjs@bigpond.com
NSW Cancer Council Cancer Support Helpline 13 11 20	Prostate Cancer Foundation of Australia 1800 220 099