No.4. August, 2002

1. REPORT OF THE MEETING HELD ON: Tuesday, 2 July

i) The meeting began with a 25 minute video, produced by the Prostate Cancer Foundation of Australia.

Video: Understanding the Prostate and Prostate Cancer.

This video provides important information about your condition and ways it can be treated. It is not intended to take the place of advice from your doctor. In addition to the running narration, medical detail is given by Dr Laurence Cleeve, Urologist, of the Peter MacCallum Cancer Institute, Royal Melbourne Hospital.

The first section is headed: The Prostate - providing the fluid of life. It explains the role of testosterone, and symptoms of prostate problems. Section two deals with: The Prostate - diagnosing prostate problems, and discusses the three main methods of diagnosis. The third section answers the question: What is prostate cancer? It identifies men who are at risk, and lists current ways of testing for size and spread of the cancer. The final section gives a very thorough overview of various treatments and possible side effects, under the heading: Which treatment should I choose?

This video is a very valuable source of information, whatever stage you are at in your encounter with prostate problems. It offers support and hope for you, the patient, for your family and your carers. It emphasises that you should be actively involved in your treatment and suggests the first steps you should take towards a longer future and a brighter day.

(If any member is interested, the video can be borrowed at any time free of charge. Just contact me. John Conroy.)

ii) Our speaker for the evening was Dr Richard Foster, Radiation Oncologist, from the Seventh Day Adventist Hospital, Wahroonga. 'Zapped by the Ray: Radiation Therapy'.

Dr Foster explained that he had not come to try to sell radiation therapy. Rather he wanted to put the facts before us, and to explain the issues related to treatment recommendations.

The first step when a man becomes concerned about his risk of contracting the disease or is showing symptoms, is to see his family doctor. Treatment might offer a cure if cancer is present, or it might suppress the cancer. Hence it is important to carry out screening tests. The incidence of prostate cancer varies between cultures. For example, it is particularly aggressive among Afro-American men who are known to contract the disease as early as 30 years of age. The youngest man Dr Foster has had to treat was 43.

If cancer is detected, it is necessary to try to determine its extent. This is known as staging. A PSA level of 20 or less would suggest that the cancer is localised. Only about 1% of men with this score would be likely to be found with a cancer that had already spread. So knowing the extent can indicate that the cancer is in an early stage (localised to the prostate gland itself); is locally advanced (has extended to the region immediately around the prostate); or is metastatic (has progressed beyond the confines of the prostate to other parts of the body, e.g., to the bones, liver or lungs). In the last case, the cancer is not curable; hence the treatment recommended by your doctor is intended to try to suppress the disease.

Generally speaking, prostate cancer is slow growing. It can take two to five years to develop after early detection. However, in some cases it can be aggressive. If the patient has a good chance of surviving beyond five years at the time of diagnosis, then he is better off with treatment. Men are naturally interested in knowing their chances of survival after alternative kinds of treatment, but it is difficult to get reliable statistics about how many have survived five, 10, 15 years after their particular form of treatment.

Treatments and Survival

The purpose of hormone therapy is to shrink the cancer, and 90% of patients who undergo it, respond to this treatment. However, the effects can wear off after about three years. The present indications for chemotherapy are that 1 in 20 respond well. Current research suggests that the greatest survival rate after 15 years is from surgery (radical prostatectomy). For locally advanced cancer, treatment may be by radiation therapy or hormone therapy, or a combination of both. (This last is reported in a recent study from the UK.) Radiation therapy is important in the treatment of extended prostate cancer, and in the case of bone cancer it can bring pain relief to 80 - 90% of cases.

Radiation Therapy

Common forms of radiation therapy include: External Beam Radiation Therapy (EBRT), Intensity Moderated Radiation Therapy (IMRT), and Brachytherapy (the use of radiation isotopes). It may also take the form of injected strontium.This may work well in about one third of cases, work a bit in another third, and work not at all in the remaining third. Its use is also limited by the fact that it can suppress bone marrow. There are certain problems associated with IMRT, especially in avoiding damage to the rectal wall.There are some queries, too, about urinary effects. A form of treatment that is still in the experimental stage is Tomotherapy which gives immediate feedback on where the treatment has hit. The wider use of this treatment may be some five years away. Radiation therapy, which administers a localised dose of radiation, is frequently used in the treatment of localised prostate cancer. However, for younger and fitter patients it would not be used. The justification for its use is to control the uncontrolled proliferation of cancer cells. Normal tissue repairs itself after exposure to radiation (depending on the size of the dose), whereas cancer tissue does not. At the start of treatment, a CAT scan is done to locate the target area, and a simulator film is used in order to target affected tissue and shield normal tissue, and to allow an overlap of radiation beams front and back and on both sides. As the prostate gland can move from treatment to treatment, due to the presence of material in the bladder or rectum, or because of the position of the patient, a margin for this movement has to be allowed. What surgeons might miss at the edge when doing a radical prostatectomy, the radiation oncologist might miss at the centre. However, more up-to-date treatment uses three dimensional planning via computer screens for greater accuracy.The patient¹s course of radiation therapy conventionally lasts from 30 to 35 days. It has the effect of an internal sunburn, and may have certain specific side effects after about three weeks from the start of treatment; e.g., nausea, or diarrhoea, but these usually disappear. It can also leave the patient feeling tired, so plenty of rest is needed. Specific problems associated with EBRT are: urinary (about 1% of cases, but treatable and recoverable), bowel (diarrhoea, bleeding, urgency, -about 2%, also treatable and recoverable), and sexual function (loss of erections, - about 30%, the same as for radical prostatectomy). So, well over 60% do not experience problems after treatment. The percentages of injury rise according to the strength of the dose.

Dr Foster concluded by pointing out that the system of care is an interaction between the social, the spiritual, the physical and the medical, with the patient as the focus. There is the suggestion that, in the future, health care may be in danger of moving away from the doctor-patient relationship to a relationship of technician and victim. The relationship should be one of mutual respect, with a recognition that the doctor can't do everything. His responsibility is to help you get on with your life but, on the other hand, the patient must work out his own solution. The sequence of steps after initial diagnosis are: treatment, rehabilitation, follow-up (but not too often), lack of evidence of the disease still being present, and (possibly) relapse, which means living with the disease but relieving symptoms and maintaining functions. Therefore, at every stage, it is important to establish a relationship with people you can trust.

2. GENERAL MATTERS

We now have a small committee looking after the interests of our Northern Beaches Group. John Reid, has taken on the role of Treasurer, and Richard Darmopil, is our Publicity man. Very many thanks to John and Richard for volunteering to take on these responsibilities. We have already discussed some future directions for the Group and we shall keep you informed about these a bit further down the track.

Sr Anne Owers has resigned from her position in the Palliative Care Unit. We thank her very warmly for for all her encouragement in helping get the Group established, and for all the untiring support she has given as we have got under way. Anne will be sorely missed, and we wish her well for the future. We look forward to a continuing robust relation with the Palliative Care Unit.

It was announced on Friday, 19 July, 2002 that Max Gardner, Chairman of the Support and Advocacy Committee of the Prostate Cancer Foundation of Australia, had been made an Honorary Member of Australia (AM) - General Division, for his work on behalf of men affected by prostate cancer. Max established the first prostate cancer support group at St Vincent's Hospital, Sydney and assisted in the establishment of the Association of Prostate Cancer Support Groups in 1998, out of which grew the PCFA. He also received the 2002 Cancer Council NSW Advocacy Award on 20 June for his exceptional work as an advocate, and for his role in increasing support for men with prostate cancer. And on 3 July, at the inaugural meeting of the Support and Advocacy Committee of the PCFA, Max was given a unanimous vote of thanks from the Committee members for his leadership and work on behalf of men with prostate cancer. Congratulations, Max, from all of us here at the Northern Beaches Support Group.

We are hoping to have Max with us at our Christmas function on Tuesday, 3 December, when we shall be able to offer him congratulations in person. Keep a note of the date and come along to meet Max.

4. MORE USEFUL WEB SITES

Cancer Voices NSW (CVN) is a new peak State advocacy organisation providing a unified voice for all people affected by cancer. It is an umbrella for advocacy and support groups. The Prostate Cancer Foundation of Australia, to which our Group is affiliated, and the NSW Cancer Council, are among CVN's member organsations. You can find out more about CVN on its website:

The website tells you what and who CVN is, where their voice is heard, who the member organisations are, and how you can contact them. It's worth having a look at the site to see the type of lobbying that CVN is doing on behalf of cancer sufferers. Become a member if you feel there are issues in which you are keenly interested and which you want to support. You can become a member on line or by mail. There is no membership fee, but a $10 donation is suggested.

5. REMINDERS: Dates of next meetings (in the Palliative Care Cottage, Mona Vale Hospital)

1. August meeting ( 6.30pm, Tues., 6 Aug.): Professor Miles Little and Ms Emma Sayers from the Centre for Values, Ethics and Law in Medicine, University of Sydney: Surviving Cancer.

2. September meeting (6.30pm, Tues., 3 Sept.): Dr Michael Lowy from the Australian Centre for Sexual Health: The Effects of Prostate Cancer on Sexual Function.

All friends, partners, carers, family are welcome at all our meetings.

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