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Queensland Prostate Cancer News The newsletter of the Queensland Chapter of the Prostate Cancer Foundation of Australia published monthly by The Cancer Council Queensland http://www.pcfa.org.au [email protected] May 2008 The Cancer Council Helpline: 13 11 20 Editor’s Notes Queensland, the SMART state? The slogan might not have had much impact on the state’s number-plates, but in the field of medical research and innovation, Queensland is SMART. It’s up there with the best, and in front of a lot more. Names of prominent research facilities that will be recognised by regular readers of Queensland Prostate Cancer News include The Institute of Health and Biomedical Innovation, the Queensland Institute of Medical Research (the largest medical research centre in the Southern hemisphere), The Queensland Cancer Council, the Mater Medical Research Institute, most of the universities and many other organisations involved the field of health and well-being. In this issue of QPCN we have reports from three local research centres (Mater Medical Research Institute, The Cancer Council Queensland and the University of Queensland), all aimed at improving the lives of those who have been diagnosed with prostate cancer. A common thread linking these establishments is the need for non-government funding to support their work. Your input, either by way of donation or participation in fund-raising activities, can help improve the outlook of current and future healthcare. Wishing you low PSA’s and good health, Editor: John Stead. CALENDAR 2008 Run for a Cure – Clip for Cancer – Dress Down Day – any time during the year Relay for Life is to be held in 41 locations across Queensland in 2008. Phone 1300 65 65 85 or visit www.cancerqld.org.au to register May 1 22 22-25 Jun – 1 8-14 9-15 Jul 4 19 Aug 1 22 27-31 31 Melbourne to London Overland (awareness events) Australia’s Biggest Morning Tea International Boat Show, Sanctuary Cove Call to Arms - men’s event Fulbright scholarship applications open Bowel Cancer Awareness Week International Men’s Health Week Sanofi-aventis grant applications close Inaugural Red, White & Sparkling Ball – Mater Medical Research Institute Jeans for Genes Day Daffodil Day UICC World Cancer Congress, Geneva Fulbright scholarship applications close Sep Prostate Cancer Awareness Month 1 7 14 Oct 3 3-5 14-19 24 27 Nov 5-7 15-17 16-21 19-21 Challenge for Cancer campaign concludes Fathers Day Cooloola 500 Sanofi-aventis grant applications close Challenge for Cancer – State Finals Long Ride for Prostate Weekend Touched by Cancer, Coomera Pink Ribbon Day Nurse of the Year – State Finals Inaugural PCFA National Conference “Supporting Quality of Life”, Gold Coast Aust Health & Medical Research Congress, Brisbane COSA Scientific Meeting, Sydney In this issue 2 3 5 Resources: Web Links, 11 Affiliated & Associated Groups Spotlight on FNQ (Cairns) Exercise & Hormone Therapy 6 7 9 10 12 Biopsy Analyses Dr Rebecca Prue – Cancer Vaccines Cancer Voices Qld ProsCan Update Shortcuts, Relaxation Centre 13 14 15 16 Footenotes PCFA Qld Report A Grand Poser Now Hair This, Brisbane Program, Privacy, Contact Us, Disclaimer The Queensland Chapter of the Prostate Cancer Foundation of Australia is grateful for the generous support of The Cancer Council Queensland, including the printing of this newsletter. The views expressed in this newsletter are not necessarily those of The Cancer Council Queensland. -2- Resources The Cancer Council Queensland Prostate Cancer Foundation of Australia www.prostate.org.au www.cancerqld.org.au A consumer’s view of the experience of diagnosis and treatment for prostate cancer. The Cancer Council Helpline Ph 13 11 20 8am-8pm Mon-Fri Research to beat cancer and comprehensive community support services. Queensland Chapter www.pcfa.org.au www.prostatehealth.org.au Information, patient support materials, and contacts for advice on living with prostate cancer in Queensland. The first stop for newly diagnosed men seeking information on the disease. APCC Bio-Resource Lions Australian Prostate Cancer www.apccbioresource.org.au Andrology Australia The national tissue resource underpinning continuing research into prostate cancer. www.andrologyaustralia.org Andrology Australia is the Australian Centre of Excellence in Male Reproductive Health. HealthInsite Mater Prostate Cancer Research Centre www.mmri.mater.org.au www.healthinsite.gov.au Comprehensive information for those affected by prostate cancer, including the latest research news. Your gateway to a range of reliable, up-to-date information on important health topics. Cochrane Library www.cochrane.org Australians now have free access to the best available evidence to aid decision-making. Prostate Cancer Support Groups in the Queensland Chapter There are 19 PCSGs in the Chapter with a total membership of approximately 3,100 men. Peer Support Group Contact Phone Brisbane Bundaberg Central Qld. (Rockhampton) Darwin Far North Qld. (Cairns) Gladstone Gold Coast Gympie & District Hervey Bay (Pialba) Ipswich Mackay Maryborough Northern Rivers (Alstonville) Oxenford-Coomera Sunshine Coast (Maroochydore) Toowoomba North Queensland (Townsville) Twin Towns & Tweed Coast Whitsunday (Proserpine) Peter Dornan Trevor Tuesley Bill Forday Peter Harvey Jim Hope Geoff Lester James Stanfield Norm Morris Brian Henderson Len Lamprecht Ted Oliver Leoll Barron Pat Coughlan Daryl Hyland Rob Tonge Len Walker Merv Albion Ross Davis Dave Roberts 07 3371 9155 07 4152 5524 07 4922 3745 08 8932 1923 07 4039 0335 07 4979 2725 07 5545 4235 07-5482 6196 07 4128 3328 07 3281 3656 07 4942 7916 07 4123 1190 02 6622 1545 07 5522 6482 07 5446 1318 07 4636 3739 07 4778 1137 07 5599 7576 07 4945 4886 The news-sheet for any group should have the meeting details for its neighbouring groups. Associated Support Groups Group Beaudesert Capricorn Coast (Yeppoon) Kingaroy Contact Carmel O’Neill, RN Jack Dallachy Robert Horn Phone 07 5541 9231 07 4933 6466 07 4162 5552 Sponsor Beaudesert Health/Gold Coast Rockhampton Toowoomba/Sunshine Coast -3- SPOTLIGHT ON Far North Queensland The Far North Queensland Prostate Cancer Support Group (Cairns) Our Objectives To support our fellow prostate cancer patients, their families & friends, improve community awareness of the incidence of prostate cancer, and encourage potential patients to seek early detection and treatment. Greetings to all from the Far North Queensland (Cairns) Support Group. Our group was formed in August 2001 by three survivors and two wives who could see that the support needed for men and their families was not available. From our humble beginning of just 20 names on our mailing list, and with the support of The Cancer Council Queensland, our mailing list grew to 165 in October 2006 and is currently 225. This is very encouraging to all concerned in the running of the group. Our newsletters go out to members in a very large area; 100km south to Mission Beach, Tully & Innisfail, then to the tableland centres of Ravenshoe, Malanda, Atherton and Mareeba, and north to Cooktown and Port Douglas. We certainly are spreading the news to a large community. We have an average attendance at our meetings of between 30 and 40, and there are always new attendees seeking support just after diagnoses and during treatment. Once they receive this support they feel more confident to travel the journey of their treatment option. Our “ Proscare” meeting in October always enjoys a large attendance. This meeting usually runs between 11.00am and 4.pm and has a number of guest speakers covering such subjects as “Understanding Prostate Cancer”, “Coping With a Diagnosis of Prostate Cancer”, “Managing Incontinence”, and “Sexual Function After Treatment”. This is a big day for the FNQ group and we always gain new members for our mailing list. As part of meetings this year we have men telling their own stories on the treatment option they have chosen and the outcomes, plus we include the wife or partner’s journey as well. It is very rewarding to have so many men willing to talk to others about the treatment option they have used, and we are lucky that we can cover all the options available. Back row: Jim Hope (Convener), Roy Hartman (Chair) & Bob Prickett (Treasurer). Front: Annette Letson (TCCQ) & Margaret Rolfe (Library & Mailing List). The highlight meeting of the year was our Commonwealth Bank awareness evening held at the Cairns base Hospital to a packed house of more than 130. We gained a lot of new names for our mailing list. -4Our keynote speaker was Dr Peter Swindle, Urologist from the Mater Hospital in Brisbane. Dr Darren Russell, Director of Sexual Function at the Cairns Base Hospital followed him, and then we heard from Ross Gomersall about his journey with prostate cancer. Graeme Higgs, Queensland Manager of the Prostate Cancer Foundation of Australia, did an excellent job of chairing the meeting and with the support of Daryl Hyland, ensured the evening was a great success. Let’s do it again this year. One of the disadvantages of living so far from the South is that we do not have a Urologist based at the Cairns Hospital to look after public patients, so they have to depend on a visiting Urologist conducting clinics when available. We have no radiation treatment in Cairns which means that those seeking this treatment have to travel to Brisbane or Townsville for their mapping and therapy. Those requiring surgery have to go to Brisbane or Sydney for this treatment, which is a real burden on the families of the newly diagnosed. There is some hope that radiation treatment is not too far away, but we will have to wait and see. It is very gratifying to see the number of women involved in our group. They are the main source of getting the men to attend meetings and usually ask the most questions of the guest speakers. Our planning committee consists of 13 people, six of which are women, so they have a large say in what is going on. Maybe it is time for the Q.C.C. to include some females at our Conveners’ Conference! We must thank T.C.C.Q. for all the support they give to our group. Our venue, the use of all the electronic equipment, the printing and posting of our newsletters, the wonderful support we receive from Mal Fraser and Annette Letson (they are part of the team), and the wonderful work that goes into the conveners workshop each year, hosted by T.C.C.Q. As a group we give T.C.C.Q. all the support we can; Relay for Life, Daffodil Day and Biggest Morning Tea. The growing number of new members we get in return is well worth the effort we put into these activities. As most of the regional groups would find, getting guest speakers is a problem and we need the support of the Queensland Chapter Council and P.C.F.A. to send copies of DVD’s of the guest speakers from their meetings, when possible. As FNQ Convener, I would like to thank my Committee for the support they have given me during my chemotherapy treatment and for taking on the extra workload to keep the group operating. I’m also indebted to them for the support given to my wife Val during her recent illness. 2008 has not started out brilliantly for us, but it can only get better. The FNQ Prostate Cancer Support Group (Cairns) meets on the 3rd Wednesday of the even months at 2.30 pm. Venue: T.C.C.Q. 169 Aumuller St (Cnr Scott St), Bungalow (Cairns). Contact: Jim Hope Convener (07) 4039 0335, Roy Hartman Chairman (07) 4055 5906. The Committee Back row: Roy Hartman, Denis McCarthy, John Goessling. Centre row: Phil Hope, Dawn Hartman, Kevin & Margaret Rolfe, Janet Goessling, Bob Prickett. Front row: Jim and Val Hope. All welcome. Bring your wife, partner, family or friend and enjoy the company of others travelling the same journey with prostate cancer. -5The following article was prepared by Dr. Dennis Taaffe from The School of Human Movement Studies at the University of Queensland. Dr. Taaffe will be giving a presentation to the Brisbane Support Group later in the year. Ed. Exercise, prostate cancer & androgen deprivation (hormone) therapy It is well known that exercise is beneficial for persons of all ages. However, evidence is accumulating that exercise may be especially beneficial for men undergoing androgen deprivation therapy (ADT) in the management of their prostate cancer. Although widely employed in treating this cancer, ADT is accompanied by a number of adverse effects. Apart from sideeffects such as a decrease in libido, fatigue, and a reduction in health-related quality of life, ADT treatment is also associated with reduced muscle mass and muscle strength, reduced bone mass and increased risk of fracture, and increased fat mass compromising physical function and potentially independence. However, recent work indicates that resistance exercise (also know as strength or weight training) may be useful in preventing or even reversing the adverse effects associated with androgen suppression. Above: Dr Dennis Taaffe For nearly two decades now, resistance exercise has been shown to be a safe and effective form of exercise in older men and women, including the very old, to improve muscle strength and size, and improve varying aspects of functional performance such as walking speed and stair climbing ability. Two recent studies undertaken in men being treated with ADT showed beneficial effects of this exercise mode. The first study from Canada, found improved symptoms of fatigue and health-related quality of life, as well as improvements in muscle strength of 30-40% following 12 weeks training. In Australia, a 20-week study by Daniel Galvão and colleagues at Edith Cowan University, found an enhancement of muscle strength (from 40-96%, depending on muscle group), muscle endurance, as well as improvements in a number of functional performance tasks ranging from 7-27%, while whole body lean mass was preserved with no change in fat mass. Importantly, both studies found that PSA levels remained unchanged, while the Australian study also found that testosterone was unaltered, indicating that resistance exercise does not appear to compromise testosterone suppression. The objective of the resistance exercise program is to progressively overload the muscles, which will result in an improvement in muscle strength and size, and also in physical performance. As in that used for young and middle-aged adults and the non-cancer population, the resistance exercise program should involve dynamic movements (not static) and target the major muscle groups of the lower and upper body. Strengthening the major muscle groups around the knee and hip joints will help reduce the risks of falls and subsequent fracture. Training should be undertaken at a moderate to high intensity, one to three times per week and resistance can be applied through the use of specialised weight training machines, as found in gymnasiums, or by the use of elastic bands, body weight or household items. Accredited Exercise Physiologists (AEPs), who are trained to provide individualised instruction for those with various conditions, should be consulted, as should your physician before you embark on the exercise program. Later this year, the University of Queensland and Edith Cowan University in Perth will be conducting a long-term study of various exercise modes, including resistance exercise, in men undertaking ADT for prostate cancer. The Inter-Professional Clinics at UQ SPORT offer a specialised exercise program for clients post cancer diagnosis. Programs run for eight weeks with classes offered three times a week. Classes are individually designed for each client, but include a range of cardiovascular exercises, strengthening, and flexibility training. The program offers the flexibility for changing exercises and intensity as dictated by day-to-day variations in fatigue and wellbeing. The knowledgeable and accredited Exercise Physiologists work closely with you to help achieve your personal goals. -6The Inter-Professional Clinics are a joint venture of the University of Queensland and UQ SPORT. They offer a range of services designed to facilitate participation in exercise by those at risk of developing chronic disease, and those diagnosed with a disease or problem that prevents participation in physical activity by traditional means. The Inter-Professional Clinics accept referrals from General Practitioners as well as selfreferring clients. Some services may attract Health Fund Rebates. For further information on the Cancer Program or any other services, please contact Helen Luery on 07 33463241, or visit our website, www.uqsport.uq.edu.au/clinics The percentage of positive cores is not a useful predictor in prostate cancer A multinational study of 3264 patients shows that, while a greater percentage of positive biopsy cores is associated with biochemical failure, it adds little to the value of conventional nomograms. The authors discussed the current predictive models in prostate cancer and the need to improve these, especially for men in the intermediate risk category. The percentage of positive biopsy cores (PPC) has been shown to be a significant prognostic factor in multivariate analysis. A total of 3264 men with clinically localised prostate cancer, and treated with external beam radiotherapy at the Peter McCallum Cancer Centre, Melbourne, Fox Chase Cancer Centre, Philadelphia, British Columbia Cancer Agency, Vancouver and William Beaumont Hospital, Royal Oak, Michigan were analysed retrospectively with respect to biochemical failure (bF). The Phoenix definition (≥ 2ng/ml above the nadir) was used, although similar results were also obtained with the older ASTRO definition (3 consecutive rises backdated to the midpoint between the nadir and the first rising value). Standard prognostic and treatment factors, the number of biopsy cores and the number positive for malignancy by transrectal ultrasound–guided biopsy were collected. The men were divided into three prognostic groups using the National Cancer Care Network criteria (21% low, 51% intermediate and 28% high-risk). Androgen deprivation was used in 30% of patients. They found that the median PPC was 50%, and at a median follow-up of 51 months this had an independent association with the risk of bF (p = 0.01). However the increased the concordance index of the overall model only increased from 0.72 to 0.73. Intermediaterisk patients were poorly discriminated with or without PPC (concordance index 0.65 for both models). The addition of PPC was most useful with radiation doses ≤ 66 Gy and in palpable tumours. The authors concluded that incorporating PPC into existing outcome models of biochemical failure in prostate cancer added little to those containing standard prognostic factors. They state that, in order to significantly improve an existing model, an additional factor needs to have a large effect (HR > 3).They felt that they may be reaching the limits of prediction using conventional factors and that new markers of tumour biology are needed for further progress. Reference Williams, S. Buyyounouski, M. Pickles, T. et al. 2008, ‘Percentage of biopsy cores positive for malignancy and biochemical failure following prostate cancer radiotherapy in 3,264 men: statistical significance without predictive performance,’ International Journal of Radiation Biology Physics, vol 70, pp. 1169-1175. -7- Dendritic cell immunotherapy for prostate cancer Almost 30 years ago, a Rhodes Scholar at Oxford University discovered some unusual looking cells in the tissues of the liver, heart and kidneys. The Rhodes Scholar was Dr. Derek Hart and the cells he described are now known as “dendritic cells”. They had been previously discovered by US immunologist, Ralph Steinman, but it was Dr. Hart’s work at Oxford University that opened up possibilities for their use in medical applications. Dendritic cells are a vital part of the body’s immune system. When an antigen that has not yet been detected by the immune system comes along, new T-cells or antibodies are produced to counter the “invasion”. Dendritic cells are able to activate T-cells to recognise and destroy antigens not previously encountered. Unfortunately, cancer cells are different. The immune system has poor capacity to evaluate tumour cells as “foreign” and this allows the cancer to spread unchecked throughout the body. Today, Derek Hart is heading up a team of scientists and investigators at the Mater Medical Research Institute in Brisbane, working on the development of a cancer vaccine using dendritic cells to activate the body’s own immune response system to combat and destroy cancer cells. The initial vaccine work is concentrating on prostate cancer for a number of reasons. The immune system has a poor response to prostate tumours, the cancer is wide-spread with one in every 10 or 11 men in Australia being diagnosed and the conventional treatments such as surgery, internal and external radiation and chemical (hormone) therapies all have the potential for significant side-effects. A vaccine would be virtually free from side-effects. This is not a vaccine in the traditional sense. It isn’t given with the aim of preventing the recipient from catching a disease such as a “triple antigen” vaccination that may be given to a child or a tetanus booster given at regular intervals. It uses prostate tumour cells, or tumourassociated antigens, combined with cells from the body’s own immune system to produce the dendritic cell vaccine which is then injected back into the body. This stimulates the immune system to attack and destroy the prostate cancer cells, causing the body to heal itself without invasive surgery or other therapy. When the developmental work on the vaccine had reached the stage where Phase 1 trials (testing the safety of the vaccines in humans) were beginning, Dr Rebecca Prue, one of the Associate Investigators working with Derek Hart, gave a presentation to the Brisbane Support Group covering the vaccine’s development and production. At the Brisbane Group’s March meeting, she returned, together with Sonia Hancock, the Clinical Trials Nurse and Trial Coordinator involved with this project, and gave an update on the vaccine manufacture and the progress of the trials. Above: Dr Rebecca Prue and Sonia Hancock. Dendritic cells get their name from their long-branching projections or “arms” (refer first slide on page eight). “Dendritic” derives from the Greek dendrites, meaning tree-like. These long “arms” allow the cells to combine with other immune system cells, however they also have specific markers on their surface so that they can be identified and isolated. Being able to isolate the dendritic cells from other cells in the patient’s blood is an essential part of the vaccine manufacture. This isolation or separation process involves selecting antibodies that recognise and bind to a marker on the surface of the dendritic cell. The antibody is linked to microscopic iron beads that allow the dendritic cells to be harvested from the blood with the aid of magnets. The cells coated with the iron beads are caught up in magnetised mesh within a column and the unwanted cells are washed away. -8- Prior to the separation process, dendritic cells make up around 1% of the blood sample. Following the harvesting process this figure is between 60 and 95%. The blood sample with the high concentration of dendritic cells is loaded with synthetic prostate cancer antigens to produce the vaccine. This is injected back into the patient to stimulate the T-cells to attack tumours that bear these antigens. Not all prostate cancer patients are eligible for involvement in the trials. Phase one trials are to test the safety of a new treatment rather than the efficacy. For this reason, the patients who participate are normally those who have reached the stage where conventional treatments are no longer of any use. Only patients with advanced hormone refractory prostate cancer (HRPC) and metastatic disease can be included. There are other criteria including blood type that could exclude up to 60% of men who may qualify in other areas. Eligibility and inclusion criteria are summarised in the boxes below. The vaccination schedule requires three vaccinations, each one a month apart. The first occurs after the dendritic cell harvesting and production of the vaccine. Only part of the vaccine is used at this time, and the balance is cryopreserved (frozen) for the further two injections. Medical checks are regularly carried out during the vaccination period and during the three months following the last injection. This phase one trial will include 12 patients. To date, eight have participated in the program and no adverse side-effects have been noted. MMRI are in recruitment mode looking for a further four participants. Once this prostate cancer vaccine has proved to be a success, there’s a good chance it can be adapted for treatment of other cancers including breast and leukaemia, and might also lead to the production of vaccines to combat such diseases as Hepatitis C and HIV. It is cutting edge science and shows enormous promise for future disease treatment. -9The trial cost is approaching $5 million. Funding has come from government, industry, philanthropic organisations and individuals, including a recent $1 million donation from Gold Coast businessman, Mr Vince Rehbein. The Cancer Council Queensland and the Prostate Cancer Foundation of Australia are amongst those assisting with funding for this research. If the phase one trial is successful, the U.S. Department of Defence will fund the next stage. The U.S. Defence Department bears the entire healthcare costs of its workforce and feels that development of a cancer vaccine will offer tremendous future benefits in both human and monetary terms. In spite of only needing a further four participants for the current trial, its important to understand the need to evaluate many more blood (dendritic cell) samples so that, if there are problems, it’s possible to look at dendritic cells from sources other than the trial participants to see how the immune system interacts with the tumour. Years of work have got the phase one trial to where it is today, but that work used blood samples from men not involved in this trial. It’s important that this evaluation process is ongoing and for that to happen, new blood samples are needed. The Mater Medical Research Institute would like to enlist the help of any men who have had, or have been diagnosed with prostate cancer and who still have a prostate gland or have metastatic cancer (the cancer has spread beyond the prostate, even though the prostate may have been surgically removed) to donate a blood sample for the research. This excludes men who have had a prostatectomy and their PSA level indicates that the cancer has been eradicated. These blood samples are vital for ongoing research. The sampling process is similar to donating blood to the Red Cross Blood Bank and takes around half an hour. Donors need to be able to get to the Mater at South Brisbane. The Trial Coordinator at Mater Prostate Cancer Research, Sonia Hancock, would love to hear from any men who are interested in assisting with this cutting edge technology, either as a blood donor or as a possible participant in the phase 1 trial if you think that you’d meet the qualifying criteria. This work could have a beneficial impact for current prostate cancer patients and offer enormous benefits for future generations. Sonia can be contacted by phoning (07) 3163 3484, or via e-mail [email protected] and will supply further details if necessary. Invitations to join Cancer Voices Qld (CVQ) were sent to all former members of the earlier working parties and steering committee. This completed the transition from the initial ad hoc association to CVQ as an incorporated body. Information received on forthcoming events has been forwarded to member organisations with related interests. Requests to support the listing of specific drugs under the Pharmaceutical Benefits Scheme has led to a review of policy which will involve Cancer Voices Australia. You are invited to join us. Please visit our website www.cancervoicesqld.org.au for current information on CVQ, including our newsletters. We always welcome information on relevant issues and are constantly looking for interesting articles to be included in our newsletter. CVQ has continued to engage the community with a fourth Forum at the Gold Coast. The Hon Jann Stuckey MP, Shadow Minister for Child Safety and Minister for Women, spoke as a nurse on the problems facing people affected by cancer. Her address confirmed her reputation as a strong community advocate on a range of important issues at both local and State levels. The issues raised by the participants confirm the findings of the previous Forums and show that their impact is Statewide. CVQ has applied for voting membership of the Consumer Health Forum (CHF), since our aims and objectives represent consumers’ views and interests. Voting members have access to high quality research material based on consumers’ views, current information on CHF activities and advocacy, access to CHF's extensive networks, and opportunity to nominate consumer representatives able to contribute to the consumer policy debate. The Cancer Council Queensland’s Prostate Cancer Research Program The Cancer Council Queensland (TCCQ) has for some years now been developing a high quality research program focusing on prostate cancer. At the heart of this program is the Prostate Cancer Supportive Care and Patient Outcomes Project (ProsCan) which began in 2005. Conducted in collaboration with the Northern Section of the Urological Society of Australia and New Zealand and Queensland University of Technology, this project aims to recruit men as close as possible to diagnosis, and follow their progress through to three years after the start of each man’s treatment. In addition, within the ProsCan project, we have been trialling a support program designed to assist men in making their treatment decision, and helping men to adjust to treatment outcomes. The support program is telephone-based and is designed to be delivered by specially trained Prostate Care Nurses. The men taking part in the study are assessed at a number of set intervals during the three year period following their treatment, and the information gathered will provide a clearer and more detailed understanding of the impact prostate cancer has had on men’s lives. It will also allow us to evaluate the effectiveness of the support program and the specialist nurse role. In addition, we are collecting information about the financial cost in relation to medical, pharmaceutical, work-related, accommodation and travel expenses as men move through diagnosis and treatment. Analysis of this information will enable us to describe the financial burden of prostate cancer and to provide men in the future with information that will help them when planning their financial and work commitments throughout their diagnosis and treatment journey. In September of last year, the recruitment phase of ProsCan was completed and we now have over 1000 men enrolled in the study. At present, we are continuing to work with the men participating in ProsCan to complete their follow-up assessments and questionnaires. The information they give will allow us to understand more fully their longer term experiences and outcomes following diagnosis and treatment. Feedback from men participating in the study has been very positive and the early results clearly indicate the value and effectiveness of the specialist Prostate Care Nurse in the support of men with prostate cancer. Genetics and Prostate Cancer As part of the ProsCan project, The Cancer Council Queensland is collaborating with medical researchers at the Queensland University of Technology (QUT), to investigate genes and gene products that may be involved in prostate cancer risk and progression. We hope to find new genetic biomarkers for the disease using fingerprints of genes, which can be assessed via simple blood sampling, to identify genetic patterns that may be related to prostate cancer. More than 885 men taking part in ProsCan have provided us with a blood sample and we are currently analysing the DNA (the genetic material) from the samples. By comparing the gene patterns in men with prostate cancer to the gene patterns in men without prostate cancer, we will be able to understand which gene patterns are likely to be important in the development and progression of prostate cancer. We will also be able to understand which gene patterns are associated with better outcomes after treatment. Above: The TCCQ ProsCan Team. - 11 - One new approach we have taken is to look at the possible role of genetics in determining the quality of life (QoL) of men with prostate cancer. We know that a number of biological markers are altered in people with cancer and these may be associated with QoL. We hope to find out if there are certain genetic markers that are associated with quality of life in men with prostate cancer. Some of our early findings suggest that bodily pain is associated with a genetic variant in one of the genes we are looking at - on average, men with a particular gene pattern described more severe pain than men with the alternative gene pattern. Research into these genetic markers could lead to the development of a DNA test that can predict QoL outcomes, enabling clinicians to give an individualised approach to maintain or improve quality of life throughout and beyond cancer treatment. ProsCan: New Directions The ProsCan project is a body of research that continues to grow and develop. Men participating in our research have spoken openly about their needs and concerns, and it has been gratifying for us to know that we are able to plan and develop further research projects to investigate these issues and trial new targeted support initiatives. Following is an outline of the new prostate cancer projects that we will be undertaking this year. The Sun Exposure, Vitamin D and Outcome of Prostate Cancer Study: Some evidence suggests that Vitamin D may protect against certain cancers, but this relationship is still unknown for prostate cancer. This study will investigate the relationship between sun exposure, Vitamin D and recurrence or progression of prostate cancer. The project will be conducted in collaboration with The Cancer Council NSW and the University of Sydney. All men taking part in ProsCan will be invited to participate in this new study. ProsCan for Couples: A significant proportion of men experience erectile problems after treatment for prostate cancer. This study aims to investigate the effectiveness of a new support intervention, assisting couples to adjust to changes in sexual function resulting from radical prostatectomy. The telephone-based intervention is designed to be delivered to men and their partners, as soon as possible following a man’s decision to have a radical prostatectomy. An audio-visual DVD resource is also being developed to enhance the education components of the program. The Partners Study: In addition to supporting patients with cancer, TCCQ also has a strong commitment to support their carers and family members. Men in Prostate Cancer Support Groups, as well as those participating in ProsCan, have expressed concern about the lack of information and support for their wives and partners. This study will investigate the long-term experiences, distress and quality of life of partners. Results from this study, which is a collaborative study with Griffith University in Brisbane and Temple University in Philadelphia, will help us to understand how we can better support partners and couples through the prostate cancer experience. The First Degree Relatives Study: Men diagnosed with prostate cancer often ask what their diagnosis might mean for their close male relatives. This study is designed to investigate how brothers and sons of men with prostate cancer make decisions about testing for the early detection of prostate cancer. At present, there is no information on the health and screening behaviours of men who may be at higher risk of developing prostate cancer because of a family history of the disease. Results from this study will lead to the development of education programs and resources for this group of men. Education Programs for Prostate Cancer Nurses Professional interest in our work with men with prostate cancer continues to grow, and we have already been approached to train staff from interstate Cancer Councils in the delivery of the ProsCan Supportive Care Intervention. It is rewarding to see that the benefits of TCCQ research projects may be available to men in other Australian states in the future. For more information on TCCQ’s prostate cancer research projects please contact the program manager, Megan Ferguson on 07 3258 2356 or visit the Prostate Cancer Queensland website which was launched in March 2007. Visit www.prostatecancerqld.org.au Megan Ferguson. - 12 - SHORT CUTS Protein in Soy Traps Prostate Cancer WebMD Medical News March 14, 2008 _ Dietary levels of genistein, a soy protein, stopped the spread of prostate cancer in mouse studies, Northwestern University researchers report. Men who live in countries with high soy consumption are less likely to die of prostate cancer than are men in the U.S. and Europe. Genistein, a protein from soybeans, keeps prostate cancer cells from spreading in test-tube studies. Now a study led by Raymond C. Bergen, MD, director of experimental therapeutics for the Robert H. Lurie Comprehensive Cancer Centre at Northwestern University, has reported its findings in the March 15 issue of Cancer Research. Study details effects of prostate cancer ATLANTA – One of the first large quality-of-life studies on today’s prostate cancer treatments suggests that for some men, it’s a matter of picking your poison and facing potential sexual, urinary or other problems. Of the choices studied – surgery, standard radiation, hormone therapy or radioactive seeds – the seeds seemed to carry a lower risk of several of these side-effects. The research was published in Thursday’s (13 March 2008) New England Journal of Medicine. Wife’s mental state key to cancer-survivor couples 2008-03-31 NEW YORK (Reuters Health) – Whether a man is recovering from cancer or helping his spouse to deal with cancer, how his wife is coping emotionally will play a key role in his physical health, a new American Cancer Society (ACS)-funded study shows. “Regardless of your status as a caregiver or a cancer patient, gender matters”, the study’s first author, Dr. Youngmee Kim of the ACS’s Behavioral Research Centre in Atlanta, told Reuters Health. Annals of Behavioral Medicine, April 2008. Above information sourced from Cancer Daily News The Relaxation Centre of Queensland Lionel Fifield is well known to many Queenslanders, and his name is synonymous with The Relaxation Centre of Queensland. He has spoken at Prostate Support Group meetings and has assisted many cancer patients on their journey through diagnosis, treatment and recovery. 33-years ago, as a stressed-out accountant, Lionel opened The Relaxation Centre in Brisbane’s Fortitude Valley where it has become something of a landmark. The centre is devoted to helping people build their self-esteem and find better ways of dealing with stress, worry, anxiety and conflict and finding greater peace within themselves. The not-for-profit organisation operates with some permanent staff and the assistance of more than 100 volunteers. On 1 April the doors closed at Fortitude Valley and The Relaxation Centre moved to new premises at Alderley, a near Northern suburb of Brisbane. The new centre offers the same services as before and includes a shop with a large range of books, CD’s and DVD’s. Above: Lionel Fifield Details of courses and program times are available from the centre, however every Tuesday morning from 11:00am to 12:30pm the Relaxation Centre hosts a cancer support session entitled “Participate in Your Own Healing”. Cost per session is $10, or $16 for a couple. The new location is at 15 South Pine Road, Alderley, QLD 4051 and the centre is open from 9:00am to 7:30pm on weekdays, and 9:00am to 5:00pm on Saturdays. The new phone number is (07) 3856 3733, fax (07) 3856 3722 or e-mail [email protected] - 13 - FOOTENOTES A few days ago I had an operation on my hand, so I have prepared this article with the use of only one hand. I am told I can’t drive the car for about three to four weeks, so I guess I am going to drive my wife crazy instead. I thought it might be appropriate to change the title of this article from Footenotes to Handnotes! This has reminded me just how important the different limbs and organs of our body are, and no doubt we are all mindful of how prostate cancer has affected us, and perhaps how we now struggle with its outcomes. Our organisation is a bit like that too. There are things to do, but without all the physical and financial resources, we often find it difficult to accomplish what we would like. I have always admired those who have undertaken the role of a Convenor or a Facilitator of a Support Group, or the leader or helper of a task group within the group. Many of these people are themselves dealing with their own disease, yet they unselfishly give of their time to assist others. Everybody who has a support role is susceptible to burnout, and it can be disabling if not identified and addressed. Running a support group can be a big responsibility and takes a lot of time and energy. It is harder if the work falls on the same small group of people constantly. No single person should be left to do it on their own, regardless of their level of commitment. Being a support person can be draining, so it's important to have support systems in place. Those suffering from burnout also find it hard to support others while dealing with issues in their own life, particularly feelings about cancer, so it's vital that we look after each other and share the load. To those who already assist in the activities of their local support group or elsewhere, may I, on behalf of all of the members of the chapter, say a very big thank you. Your efforts are very much appreciated. To any who may be at a stage with their journey where they might be thinking how they can “make a positive difference in men’s lives”, then may I encourage you to think seriously about becoming involved within your own group, or maybe the wider activities of the Queensland Chapter Council. In the last issue of QPCN I mentioned that I would keep you informed of the activities within the Chapter. Our Chapter Council meeting can be very intense and our meeting on 2 April was no exception. We made some important decisions regarding how we operate and do things, and identified areas where we see a need for involvement. Some of our plans include: (a) Identifying outreach areas not covered directly by support groups and initiating two to three new support groups; (b) Provide training to all support group co-coordinators and their assistants, in conjunction with The Cancer Council Queensland; (c) Visit at least six regional support group meetings and render any support necessary; (d) In conjunction with local support groups and PCFA, visit outreach areas to provide information and support for people with prostate cancer, their families and friends; (e) Many support groups do not have access to professional speakers, hence four professional presentations are to be filmed this year for distribution as DVD's or videotapes to each support group. There were other matters, but these were the ones of most interest to the groups. And of course, we need to seek funding so that we may achieve all of our objectives. As I mentioned previously, the year ahead is very challenging, but together, I believe we can make our objectives a reality. So until next issue, may I wish you all good health. Lionel Foote. Chair, Queensland Chapter Council. Prostate Cancer Foundation of Australia. - 14 - Prostate Cancer Foundation of Australia Queensland. Report from Graeme Higgs, Queensland Manager. As we restarted after the Easter break, the team in PCFA’s Queensland office reflected that February, March and April have been filled with some very busy days! In short order we have: • Appeared before the Queensland Health Minster’s parliamentary secretary to speak to a brief (written from facts researched by the always accurate and well-informed, Don Baumber) seeking funds for local initiatives and the annual conference; • Aided the Toowoomba ANZ in their fundraising events (so far over $1.8K raised), as well as supporting Phil Sutherland’s “Mates on the Road” on-going fundraiser that’s already garnered several thousand dollars (check out the PCFA website – he’s on the front page); • Staffed exhibitors’ awareness booths with volunteers from the Brisbane and Gold Coast PCSGs, at the Kedron Wavell RSL Aging Expo, as well as the Australian Professional Pharmacist conference (many thanks to Lionel, Daryl, Fred, Ian, Ross, Don, Colin and all the others who helped out); • Participated in the Formula One initiative (well, Alison did, the rest of us had to stay home and do the boring office stuff!); • Planned our presence at both the Sanctuary Cove International Boat Show and the “Rumble to the Rock” (which has already raised nearly $8K); • Presented to the electrical division of Downer EDI (who raised $10K for us); • Received $820.00 donation from the fly boys at Amberley who organised a “run-what-youbrung” drag race for our benefit; and • Tried to find a permanent home. Yes, the move has been further postponed, so three people continue to cram together in a one-person office space (it’s a good thing we all get along!) We’re still looking to move closer to the CBD (eg Kelvin Grove, etc.), but it’s a challenge to find the right place at a good rate! Something that’s not a challenge – and that’s a good thing – is the recognition now being given to prostate cancer and those struggling with its impact. Late in February, the Queensland office received an invitation to join the Queensland Health consultative panel, providing feedback from and input into the ever-evolving state-wide cancer treatment plan. After discussing the matter with PCFA SAC chair Bill McHugh, Ian Smith was approached to fill this role. Ian, as many of you know, is heavily involved in the fight to increase travel subsidies for those requiring treatment away from their regional or rural homes. I think everyone can be very confident that Ian will use his position on the panel for the good of the cause. Under the chairmanship of well-known Queensland identity Terry Jackman, Ian has also joined the inaugural Queensland PCFA Board, which met for the first time in March. His fellow Board members are Don Baumber, Bob Brown and Jim Hughes. Ian, Don and Bob have, among a great number of other tasks, been very active in the development of the PCFA annual conference, through their participation in the conference working committee. Formal announcement of the conference will be made in the near future, however please mark your dairies for November because it is going to be big! – Graeme Higgs - 15 - A grand poser from the Grand Prix The Prostate Cancer Foundation of Australia was the official charity for the 2008 Australian ING Formula 1 Grand Prix held in Melbourne in March. The demographic for the Grand Prix is similar to that of Movember. It contains a large number of men in the 20-40 age group - ideal for prostate awareness education. PCFA organised volunteers to sell Grand Prix memorabilia and along with a community partner, Foundation 49, arranged for free health checks, including a cholesterol check, BMI and computerised health assessment. Over 400 men took advantage of the service. Jo Fairbairn, PCFA’s National Community Partnerships & Health Promotions Officer, obviously not a fan of F1 cars pursuing each other around a race-track, decided on a trivial pursuit of a different kind to while away the laps. She noted the country of origin of all 25 of the Formula 1 drivers and checked out the annual incidence of prostate cancer diagnoses per 100,000 men in each of the countries. The result is the thought-provoking chart below. The variations give plenty of food for speculation, in which case they could be related to diet! Or perhaps ethnicity, or atmospheric pollutants, or physical activity, or climate, or something in the water, or BMI, or vitamin deficiency, or cholesterol levels, or a lack of certain trace elements, or a combination of all of these, or…???? Prostate cancer incidence in each of the Formula 1 drivers’ country of origin Number Name Country Age-standardised rate, per 100,000 1 Kimi Räikkönen FINLAND 84.4 2 Lewis Hamilton GREAT BRITAIN 52.2 3 Fernando Alonso SPAIN 35.9 4 Felipe Massa BRAZIL 53.2 5 Nick Heidfeld GERMANY 60.5 6 Robert Kubica POLAND 24.1 7 Heikki Kovalainen FINLAND 84.4 8 Giancarlo Fisichella ITALY 40.5 9 Nico Rosberg GERMANY 60.5 10 David Coulthard GREAT BRITAIN 52.2 11 Alex Wurz AUSTRIA 71.4 12 Mark Webber AUSTRALIA 76.0 13 Jarno Trulli ITALY 40.5 14 Sebastian Vettel GERMANY 60.5 15 Jenson Button GREAT BRITAIN 52.2 16 Ralf Schumacher GERMANY 60.5 17 Takuma Sato JAPAN 12.6 18 Vitantonio Liuzzi ITALY 40.5 19 Adrian Sutil GERMANY 60.5 20 Rubens Barrichello BRAZIL 53.2 21 Scott Speed USA 22 Kazuki Nakajima JAPAN 12.6 23 Anthony Davidson GREAT BRITAIN 52.2 24 Sakon Yamamoto JAPAN 12.6 25 Christijan Albers THE NETHERLANDS 56.7 Source: Globocan 2002 IARC. Rates are Age-standardised to the World Population 124.8 - 16 - Does my head look big in this? Far North Queensland (Cairns) Convener, Jim Hope, began his cancer journey in 1997 when he was diagnosed with prostate cancer. Late last year he started on a second cancer journey when he was diagnosed with non-hodgkin lymphoma. Any more journeys and he can become a travel agent! Jim, with two other prostate cancer survivors and two partners, began the Far North Queensland Support Group in 2001 (see story on page 3 of this issue of QPCN) and has been a powerhouse in raising awareness of prostate cancer in the local community and raising funds for research. Currently undergoing chemotherapy to combat the non-hodgkin lymphoma, Jim is dabbling with the idea of a wig to compensate for the hair loss caused by the chemo. If the wig in the photo is Now hair this! his final choice, QPCN suggests that he could put a couple of pairs of rolled socks down the front of his shirt and audition for LES GIRLS. Brisbane PCSG – 2008 meeting program The Cancer Council Queensland, 553 Gregory Tce, Fortitude Valley Mornings at 9:30am (odd months) Evenings at 7:00pm (even months) 14-May Erectile Dysfunction. Dr Richard Clarke, Central City Men’s Clinic 11-Jun Incontinence. Katrina Dalziell - Physiotherapist 9-Jul TBA 6-Aug Management of Advanced Prostate Cancer. Dr David Grimes, Oncologist. 10-Sep Prostate Cancer Research. Professor Colleen Nelson 8-Oct Prostate Cancer Awareness Evening 12-Nov Exercise & Fitness for Prostate Cancer. Dr Dennis Taaffe & Helen Luery. 10-Dec Cameo & Christmas Party Important privacy information You have received this newsletter because you have provided your contact details to The Cancer Council Queensland or to a Prostate Cancer Support Group (PCSG). The primary purpose of collecting your contact details was to enable support, resources and information to be offered to you as a person affected by or interested in prostate cancer. Your contact details are held in the local office of The Cancer Council Queensland. The Cancer Council Queensland ensures compliance with the Privacy Act, and does not use or disclose your details except as you might reasonably expect. You may access your details and you may request that we correct or amend (ie. update) or delete your details. If you are a member of an affiliated PCSG you will initially receive by post your local group’s news-sheet, the monthly Queensland Prostate Cancer News (QPCN), and the national quarterly Prostate News. You may also receive other communications from time to time such as advice on upcoming symposia, news or surveys from research establishments, details of open clinical trials, and guidelines being reviewed. You may ‘opt-out’ of any of these services at any time, ie. you will no longer receive any material of that type, by letting us know your wishes. QPCN is available online at http://www.prostatesupportqld.org.au/prostate. Should you receive multiple copies, please let us know which address(es) to remove from which mailing list(s). Contact Details for both the QLD CHAPTER OF PCFA and Qld Prostate Cancer News Mail: c/- The Cancer Council Queensland, PO Box 201, Spring Hill Qld 4004 Email: [email protected] Phone: via The Cancer Council Helpline 13 11 20 DISCLAIMER Council (ie. the Council of the Queensland Chapter) accepts no responsibility for information contained in this newsletter. Whilst the information is presented in good faith, it may contain information beyond the knowledge of Council and therefore cannot be taken to be the opinion of Council. The information in this Newsletter is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read here. LAST WORD (the wisdom of zen, and zen some) Don’t be irreplaceable. If you can’t be replaced, you can’t be promoted. If at first you don’t succeed, then skydiving’s not for you. A closed mouth gathers no foot. Experience is something you acquire just after you need it.