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Did You Know - June 2016

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Did You Know June 2016 Newsletter

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Did You Know - June 2016

  1. 1. EUROPA UOMO / Did You Know? N°2/2016 1 Europa Uomo’s new board as off the General Assembly, June 20-21, 2015: Contents p.1 Editorial p.3 The Chairman’s Letter p.4 PSA Testing misunderstood Awards p.5 Prostate cancer deaths ‘could rise by a third’, Charity warns p.6 PSA Consensus p.7 EAU Patient Information p.8 News Flashes p.10 Communications: Tackling the Issue p.11 Prostate cancer survivors and mental health p.13 Radiotherapy for metastatic prostate cancer p.14 Prostate Cancer Units Network p.15 Member events in 2015 and proposals for 2016 (part II) p.16 Overview Articles 2015 Website Europa Uomo Editorial by Malcolm G. Duncan, the Newsletter Editor Our chairman, Ken Mastris, opens this number of the Newsletter speaking of the ambitious Strategic Plan which will be presented to the forthcoming annual assembly in Hoorn (The Netherlands) for approval. Much of the discussion in this number of the Newsletter will be dedicated to varying opinions on the value and reliability of PSA screening tests and its possible forthcoming substitution. For the second time running the United States of America is toying with the idea. On the contrary, Tackle’s chairman, Roger Wotton, expresses the strong belief that it is still valid and at present is the currently approved initial test for prostate cancer detection, at least in Europe. Tackle has produced 13 consensus statements about PSA testing in men without any prostate cancer symptoms (see pages 6 & 7). One of the common problems is the limited sensibility of Did You Know? – N°2 – June 2016 The voice of prostate cancer patients across Europe
  2. 2. EUROPA UOMO / Did You Know? N°2/2016 2 many GPs and Tackle is in fact working on a 10 year project, backed by Professor Robert Wiston, which will install information directly on the GPs’ computers in order to increase their awareness once their patients reach 45/50 years of age. In fact it is estimated that no more than 8% of British men in this age category are advised to undergo this test, which probably accounts for the rather high prostate cancer annual deaths of around 10,900, probably mainly caused by late detection. His detailed article was motivated by a misleading article which recently appeared in the British press and which, surprisingly, was written by a GP. One of the News Flashes touches on the ordeal of Italian men and women diagnosed with some form of cancer. Reports of similar ordeals in other European countries are most welcome in order to sensitize medical and political authorities on such predicaments and encourage the most appropriate timely actions to make amends. Nevertheless the Newsletter reports of ongoing and so far very promising research being conducted by the San Raphaele hospital in Milan, reported by the Daily Mirror and by the monthly Hot Sheet produced by US TOO. We may shortly have a more reliable screening test which will also give the important added advantage as to whether the prostate cancer is of a dormant or aggressive nature. Currently such additional advantage requires a biopsy of a tissue sample which is called a Gleason score. Is PSA screening on the way out ? Source: The Daily Mirror & Hot Sheet US TOO A new blood test invented and still subject to final tests by Italian doctors is proclaimed to be vastly superior and more reliable than the current PSA screening test. Besides noting the existence of a cancer in the prostate, it is able to diagnose whether it is aggressive or not, depending on the low level of testosterone in the blood. A low level indicates an aggressive cancer which requires urgent surgery, otherwise Active Surveillance is probably more appropriate, at least for the moment. Currently prostate cancer aggressiveness can only be measured by examining a prostate tissue sample via a biopsy which is known as the Gleason score. This same research also promises the possibility of preventing prostate cancer in the future. Dr Thorsten Bach, chairman of EAU’s Patient Information Projekt emphasizes the need to improve informing patients about the disease and its treatment which is often sadly lacking due to the work load of the medical staff, and has therefore created an appropriate informative website www.patient.uroweb.org which contains EAU guidelines and unbiased information. The column named “News Flashes” contains several other interesting novelties such as Pharmacovigilance and the PRAC strategy which assures the safety of drugs and medicines; ASCO’s (American Society of Clinical Oncology) final recommendation of Active Surveillance to avoid over-treatment; Vanderbilt’s examination of risk factors of Cardiovascular disease in prostate cancer survivors; and the Guardian reports of diagnostical errors made by a leading Australian urologist which affected at least 40 patients, which led to the sacking of a South Australian health executive; The American Journal of Clinical Oncology warns against an overuse of radiation; researchers reported that using non-coding RNAs as biomarkers will lead to more reliable and accurate tests for prostate cancer than the current PSA test; US TOO’s Hot sheet in May warns against possible complications related to prostate biopsies disclosed by Mayo Clinic researchers; the frequent ordeal of Italian cancer patients of both sexes; and finally but most important ESO (European School of Oncology) has produced an appropriate website where prostate cancer patients may shortly find the nearest specialised hospital in treating this disease www.prostatecancerunits.org. This website will also cover other European countries. Here they will meet a team of specialists of all kinds, urologists, oncologists, radiologists, psychologists etc. and be personally involved in the search for the most appropriate treatment, which may be simply Active Surveillance, depending on the nature of the prostate cancer: dormant or aggressive. Roger Wotton, Tackle’s chairman, speaks of the importance of communications and their success both with the press and with various governmental bodies such as the NHS and NICE, as well as their constant efforts to keep all their 80+ centres, distributed throughout the country, promptly informed on all matters. I have included a most interesting article produced by Marie-Anne van Stam of the Netherlands Cancer Institute Utrecht (NL) which warns of higher levels of anxiety, depression and even suicide of prostate cancer patients in comparison with the general population, and ways and means of counteracting and resolving this dilemma. They observed in their research 6 common risk factors: being a widower,
  3. 3. EUROPA UOMO / Did You Know? N°2/2016 3 having a low socioeconomic status, poor general health, bodily pain and urinary bother. The article offered by a patient is of a completely different character. It speaks of dilemmas which were not limited to prostate cancer, and talks about some important home truths regarding the reaction of many men, especially of Latin countries, and compliments most women for their practical attitude in facing diseases. He also shows no lack of a sense of humour which, according to doctors and psychologist in particular, is an important ally in such circumstances. I hope to receive other letters from patients which may help other prostate cancer sufferers to face life and their disease in a more realistic manner. 3 national associations provided news on their recent activities. Austria spoke of their efforts to favour the further development of eastern European associations; the Czech Republic informed us of their many informative and educational publications; and FEFOC, Spain, celebrated its 20th anniversary. The Chairman’s Letter by Ken Mastris, Chairman Europa Uomo Dear friends, As I write this Letter my thoughts are dominated by the knowledge of our forthcoming General Assembly in the Netherlands where we will discuss our future strategy and changes to our Statutes. Our current Statutes do not permit the Board to make any changes. The choice will be decided by the voting members at the GA. I would like to take this opportunity to thank all patient advocates who are the backbone of our advocacy group and who are the voice of prostate cancer patients throughout Europe. I have heard that the word advocate is not liked by some of our members and their associations. If so please let the editor know of any plausible alternative. I would like to take advantage of this occasion to thank all our supporters EAU and ESO for their continuous support together with our pharma backers. All relevant details are on our website. I am pleased to inform you that the Board has decided to honour Louis Denis as our second patient ex-office member of the Board. His expertise and fame have proved invaluable to the Board and to the association. I was delighted to hear that some members have offered their services as Liaison Officers (LOCs), but we still need others to enable us to be present and represented at all relevant meetings and events. In fact the Board has been very busy attending guideline committees and working with our medical friends in the setting up of highly specialized prostate cancer centres. Although much has been achieved, the majority of the male sex is still little aware of the importance of the prostate and the relevance of any diseases including cancer. Our main goal is therefore to promote education and awareness in all our member states and ensure that all patients get the same standard of treatment and care. Prostate cancer is suffered by one man out of every six and can prove mortal, especially when detection is late. This problem is tackled in our Strategy Document which requires GA approval. I invite an open dialogue on the above document and would greatly appreciate any suggestions also conveyed to the editor. We still have to improve our communications with all our associations and members as well as with the outside world including the medical and political authorities. I am looking forward to the coming year and count on your continued invaluable co-operation and advice. Best regards, Ken Mastris
  4. 4. EUROPA UOMO / Did You Know? N°2/2016 4 PSA Testing misunderstood Roger Wotton, Tackle Prostate Cancer, 16 March 2016 The article below appeared in a women’s magazine published in the UK in March 2016, written by a doctor. The following response is offered on behalf of Tackle Prostate Cancer. PSA testing DOES save lives. The EU Randomised Screening Study for prostate cancer showed a 22% reduction in prostate cancer deaths in those screened, compared to unscreened. Some might argue that as the most common cancer in men, it deserves to be on the UK National Screening Programme list alongside bowel, breast, cervical and others. It isn’t. In a perfect world we would have a single, accurate and universal test for prostate cancer. It’s not a perfect world. The PSA test is the only currently approved initial test for prostate cancer, so we have to work with what we have. There is no point burying our head in the sand and letting things take their natural course. The problem with the test is that it is often misunderstood, used incorrectly and is generally dependent on a GP willing to offer the test on request. This doesn’t always happen. What is certainly needed is an informed approach to PSA testing. Offering a PSA test to asymptomatic men from the age of 45 is something now emerging as accepted practice. Even now, every man over the age of 50 is entitled to a PSA test in the UK in consultation with his GP. The problem is, we know that only around 8% of men in this category are tested. Looking at the test itself, there is nothing wrong with a man knowing his PSA score. A man with a score >100 has prostate cancer. A man with a score >10 is 50% likely to have prostate cancer and a man with a score in the range 5 to 10 is 25% likely to have prostate cancer. The problem lies with the approach followed by some in the medical profession whereby a man with a score over the threshold, say a 4 or a 5, is sent straight for a biopsy. Such relatively borderline scores should be subjected to a risk assessment looking at factors such as family history, the “free to total” ratio (a further dimension of PSA testing), MRI Scanning and even biomarkers in the blood before biopsy. This would cut out much of the risk of over treatment. There is clear evidence that 1 in 3 of new cases are now only put on active surveillance, which in itself is hardly representative of over treatment. The fact remains the UK has the highest incidence of advanced prostate cancer at diagnosis and the lowest rate of ongoing testing in Europe. If you look at the data collected by the Graham Fulford Charitable Trust, a body which carries out free PSA testing throughout the country with the support of Tackle, , they have found 953 cancers in the first 48,000 tests followed up. A find rate of around 1 in 50 tests. Nobody wants to see over treatment....the tools already exist to prevent it if they're in the right hands...but equally importantly nobody should want to see unnecessary early and frequently agonising deaths. Awards In due recognition of their status as founding members of Europa Uomo Europe and their precious involvement and co-operation since the foundation of this European prostate cancer advocacy association, which now includes associations in 23 European countries, Dr Alberto Costa, Prof. Dr Louis Denis and Tom Hudson have been awarded an Honorary Membership of Europa Uomo.
  5. 5. EUROPA UOMO / Did You Know? N°2/2016 5 In view of his special and continual commitment to Europa Uomo, first as General Secretary, then as Special Advisor, Prof. Dr Louis Denis has also been appointed as an ex-officio member of the European Board. We thank all of them for their invaluable contribution to the growth and success of Europa Uomo across the European continent. Prostate cancer deaths 'could rise by a third',Charitywarns Prostate cancer will kill more than 14,500 men a year by 2026 unless action is taken, Charity has said. BT.com, 26.02.2016 Prostate cancer will kill more than 14,500 men a year by 2026 unless action is taken, a charity has said. Deaths from the cancer in the UK could rise by a third, from the 10,900 men it kills every year at the moment, due to an ageing population, Prostate Cancer UK said. It has launched a 10-year plan, backed by Professor Robert Winston, to cut cancer deaths and improve diagnosis, treatment and prevention. A new tool for GPs should be available within the next five years to pick up more cancer cases and prevent too many men undergoing biopsies that may not be needed. It will use the current PSA (prostate specific antigen) test, which is a blood test that can detect the early signs of an enlarged prostate. Charity's director of research, Dr Iain Frame, said the new tool would be built into existing GP computer systems. "It will let them input information like a man's age, ethnicity, family history and PSA level, and give back an indication of his individual risk of having aggressive prostate cancer," he said. "More than that, it will then give both the man and his doctor a clear idea of what they should do next - whether that's go straight to a urologist, not to worry about another test for years, or something in between - a bit like a red/amber/green traffic light system." The charity's plan will also look at prevention, including investigating whether there are any events that trigger prostate cancer growth. Further, it will look at whether diet, exercise or environmental factors impact on prostate cancer, and further research into preventing prostate cancer from returning. Overall, Prostate Cancer UK wants to halve prostate cancer deaths within a decade. Professor Winston said: "When you get to my age, prostate cancer is one those things that becomes a real threat. "So this plan is game-changing. "If prostate cancer can be brought to a standstill within my lifetime and reduced to something that my sons and my grandsons need not fear, that's big news. "But Prostate Cancer UK needs our support to get there. "We have a historic opportunity which we'd be crazy to miss." Prostate Cancer UK's chief executive Angela Culhane said: "The urgent objective is to shift the science and change prostate cancer from a killer into something a man can live with. "This is the endgame. "We're on the brink of the scientific breakthroughs necessary to stop this disease in its tracks so that by 2026 it won't pose the threat it does today. "Right now, prostate cancer kills a man every hour in the UK and that figure is set to rise. "One in three men diagnosed with the disease currently dies from it, putting survival rates for our men behind most of Europe. "It's scandalous and we can't let it continue." A Department of Health spokesman said: "The number of people surviving cancer is at a record high and continues to improve. But we want to be even better and save more lives. "We are continuing to increase awareness of symptoms, training more staff to do tests and have committed up to £300 million a year by 2020 on increasing testing to improve early diagnosis."
  6. 6. EUROPA UOMO / Did You Know? N°2/2016 6 PSA Consensus Roger Wotton Working with key parties from across the UK, including ourselves, Prostate Cancer UK have led the development of a set of 13 consensus statements about PSA testing in men without symptoms. You can read the statements below or on Prostate Cancer UK’s webpage here Commenting on the statements, Dr Jon Rees - a GP and member of our Clinical Advisory Board - said "The controversy that surrounds PSA testing for asymptomatic men means that most GPs face constant uncertainty on how to offer a sensible, evidence-based approach to this problem. This approach, however, also needs to be based on pragmatism – men are understandably concerned about prostate cancer, and a ‘no-testing’ policy is utterly unrealistic in real life primary care". We have also issued a response to the statements which you can read here. Statement 1 In the future, health professionals should look at a man’s PSA level alongside other known risk factors as part of a risk assessment tool, when one becomes available. Prostate Cancer UK are currently working to develop a simple and reliable risk assessment tool, which will show whether a man is at risk of getting prostate cancer. This will help health professionals to support men at risk and talk to them about possible further tests. Statement 2 GPs and practice nurses should know what may increase a man’s risk of getting prostate cancer. Statement 3 GPs and practice nurses should be prepared to start conversations about the pros and cons of the PSA test with men who have a higher risk of getting prostate cancer. Statement 4 The government and health organisations, with help from health professionals and charities, should make sure men know about their risk of prostate cancer, and about general prostate health. Statement 5 All men should be able to have a PSA test if they’re over 50. Men who have a higher risk of prostate cancer should be able to have a PSA test if they’re over 45. The Prostate Cancer Risk Management Programme guidance, from Public Health England, states that "the PSA test is available free to any man aged 50 or over who requests it, after careful consideration of the implications". Statement 6 If a man is thinking about having a PSA test, his GP or practice nurse should talk to him about the pros and cons. This should help the man decide whether or not to have a PSA test. Statement 7 If a man has no symptoms of a prostate problem and is clearly likely to live for less than 10 more years, his GP or practice nurse should advise him not to have a PSA test. This is because a man in this situation is unlikely to benefit from having the test. Early prostate cancer doesn’t usually cause any symptoms. It often grows slowly and has a low risk of spreading. So it may never cause any problems in a man’s lifetime or affect how long they live. Statement 8 If a man decides to have a PSA test, his GP should offer him a digital rectal examination (DRE) as well, even if he has no symptoms of a prostate problem. Statement 9 Even if a man has no symptoms of a prostate problem, he should be referred to a specialist at the hospital for more tests if:  he has a higher risk of prostate cancer, and  he is aged between 45 and 49 years, and  his PSA level is higher than 2.5 ng/ml. Statement 10 When deciding whether to refer a man to a specialist at the hospital, GPs and practice nurses should look at the man’s previous PSA test results. They should look at any rise in the man’s PSA level, even if their PSA level is still ‘normal’ for their age. A ‘normal’ PSA level is less than 3ng/ml for men aged 50-69. Statement 11 Men with a ‘normal’ PSA level should be able to have another PSA test in the future, even if they still have no symptoms of a prostate problem. This is known as repeat testing. Men should discuss how often to have a PSA test with their GP or practice nurse. This will depend on that man’s risk of getting prostate cancer. Statement 12 Men over the age of 40 who have no symptoms of a prostate problem should think about having a PSA
  7. 7. EUROPA UOMO / Did You Know? N°2/2016 7 test to help work out their risk of getting prostate cancer later in life. This is known as a ‘baseline’ PSA test. If a man aged between 40 and 49 years has a PSA level higher than 0.7ng/ml, this may mean he has a higher risk of getting prostate cancer. He and his GP or practice nurse should talk about having regular PSA tests in the future. This might be a good way to spot any changes in the man’s PSA level that might suggest prostate cancer. Statement 13 The PSA test (with or without a digital rectal examination) should not be used in a national screening programme for men in the UK. Source: Prostate Cancer UK. Consensus statements on PSA testing in asymptomatic men in the UK - Information for patients and the public. 2016. Available from: www.prostatecanceruk.org/PSAconsensus EAU Patient Information Prof. Dr. med. Thorsten Bach (FEBU), Chairman EAU Patient Information Projekt Informing patients about their disease, the treatment course and follow-up is an essential part of treatment success. During the daily working routine unfortunately it is almost impossible to fulfil this demanding process by healthcare providers due to the regular work load. Furthermore, a lot of our patients seek information about disease and treatment options on their own, naturally ending up with an internet search, which is often where problems begin. Commercial interests and bias lead to a lot of unhelpful and in some cases even dangerous information and it is hard, if not impossible, for our patients and their relatives to distinguish between medical and commercially driven information. To overcome this problem, EAU founded the Patient Information Project (www. patient.uroweb.org), to provide EAU guidelines-based, reliable, unbiased information on urological disease for patients, relatives and healthcare providers. It is a collaborative effort between urologists, national societies and patient groups such as Europa Uomo and the European Cancer Patient Coalition (ECPC). The goal is, to lift the understanding of our patients about their disease, to a new level. A Patient Information Working Group has been established to ensure further development of the project. Under the chairmanship of Prof. Thorsten Bach from Hamburg, young urologists from the Young Urologists Office (YUO/YAU), the European Society of Residents in Urology (ESRU) and nurses (EAUN) will be responsible for developing new patient information, updating existing topics and exploring new ways to further expand the Patient Information initiative, with novel products such as animated videos and 3D images. The re-structured and restyled website of the EAU Patient Information (http://patients.uroweb.org) offers all topics in a new, clearly arranged format, including patient summaries of recent research, news items and other resources such as an ever expanding database of patient support groups throughout Europe - all to create a comprehensive platform that is used by patients and medical practitioners alike.
  8. 8. EUROPA UOMO / Did You Know? N°2/2016 8 Note Europa Uomo: We, as patient organisation, recommend to read the EAU Patient Information: http://patients.uroweb.org/i-am-a-urology- patient/prostate-cancer/ where you can find EAU information on prostate cancer in several languages. NEWS FLASHES Better to be safe than sorry! Summary of information provided by EMA The safety of the drugs and medicines produced by the pharmaceutical industry is the responsibility of a body appropriately named Pharmacovigilance and the PRAC strategy adopted for the measurement of the above medical innovations. Its activities, organized in co-operation with the regulators and pharmaceutical companies, strive to improve the functioning of medical products, prevent or minimize adverse events and restrict access to medicines when the benefit-risk profile is no longer positive for a certain patient population. National competent authorities and EMA (European Medicines Agency) have a legal obligation to monitor outcomes of risk management controls and suspected ADRs(Adverse Reaction Reports), and so prevent or minimize eventual adverse events. It is of utmost importance to measure the impact of pharmacovigilance activities in order to favour the development of an EU proactive pharmacovigilance system, so as to review the effective benefits and eventual risks of individual medicines in use in Europe. The guiding principles of the PRAC strategy are as follows: health-focused, science based, embedded in the work of the network of national competent authorities, co-operation with academia, patient associations, healthcare professional associations and industry, as well as targeting key pharmacovigilance activities where improvements are most likely to benefit patients. ASCO Endorses Active Surveillance for Prostate Cancer Extract from US TOO Hot Sheet April 2016 While other American organisations have recommended AS for some time led by NCCN in 2010 for the treatment of low risk prostate cancer, the American Society of Clinical Oncology (ASCO) has only recently recommended AS instead of immediate treatment for most men with low risk prostate cancer. “There is growing awareness that AS is an important approach to spare many prostate cancer patients from treatment that they don’t need and that can cause lasting quality-of-life effects.” Lead author of the endorsement is Ronald C. Chen, MD, MPH, from the University of North Carolina Lineberger Comprehensive Cancer Center in Chapel Hill. Vanderbilt Examines Risk Factors for Cardiovascular Disease in Prostate Cancer Survivors Extract from US TOO Hot Sheet April 2016 The estimated three million prostate cancer survivors in the US are likely to die from something other than cancer, thanks to early detection, effective treatment and the disease’s slow progression. What survivors
  9. 9. EUROPA UOMO / Did You Know? N°2/2016 9 need to be more concerned with is heart disease, the most common non-cancer cause of death for men with prostate cancer, according to a paper published in the journal Circulation, authored by Vanderbilt physicians. Figure: Conceptual approach for impact measurement of pharmacovigilance (EMA, PRAC strategy on measuring the impact of Pharmacovigilance activities, 11 January 2016) Though currently there are no broadly accepted criteria in order to evaluate pharmacoviligance activities and therefore improve support for PRAC strategies, much depends on spontaneous reporting of suspected adverse reactions. As part of the ongoing strategy, an ad hoc workshop will be organized during the course of 2016 to spread news on current activities and progress, and thus create synergy between the various national and international initiatives. Prostate Cancer Detection from Urine RNA Steps Closer Testing for non-coding RNA molecules in urine may offer a way to detect prostate cancer that is more accurate and reliable than current methods using biomarkers such as PSA and PCA3. The researchers believe using non-coding RNAs as biomarkers will lead to more reliable and accurate tests for prostate cancer than the current PSA test. This was the conclusion of a German study presented on March 11-15, 2016, at the European Association of Urology Congress (EAU16) in Munich, Germany by Friedemann Horn, a professor in the University of Leipzig and the Fraunhofer Institute for Cell Therapy and Immunology IZI, and Manfred Wirth, a professor in the University of Dresden. Both researchers led the work. Extract from Hot Sheet 5/16 of US TOO SA orders review after 100 men were given false positive prostate cancer results The errors were uncovered by a leading urologist, Dr Peter Sunderland, who ordered new tests which gave negative results. At least 40 of his patients were affected by this mistake. The health minister, Jack Snelling, has ordered an independent report by an interstate expert to find out what went wrong and the errors led to the immediate sacking of a South Australian health executive. The opposition spokesman, Stephen Wade, has however called for a wider ranging inquiry and asks when were the patients duly informed of this terrible error. From The Guardian, UK For Prostate Cancer, More Radiation May not Improve Survival New technology has enabled doctors to administer higher doses of radiotherapy (RT) to prostate cancer patients with fewer side effects. However, a new study shows that escalating the dose may not actually help in the long term, at least not men with localized prostate cancer. The results were published online in the American Journal of Clinical Oncology. Extract from Hot Sheet 5/16 of US TOO PSA Screening Publications Influence Biopsy Rates and Associated Complications While absolute rates of biopsy and post-biopsy complications have decreased following several benchmark PSA screening publications, the relative risk for each patient continues to increase, according to a new study by Mayo Clinic researchers. The study is the largest to exam the impact of PSA screening and revised PSA screening guidelines on rates of prostate biopsy and the first to examine their impact on post-biopsy complications. The results, which appeared in European Urology suggest a need to reduce the harm associated with biopsy. Extract from Hot Sheet 5/16 US TOO
  10. 10. EUROPA UOMO / Did You Know? N°2/2016 10 The Prostate Cancer Units Network Diagnosed with Prostate Cancer consult the following website www.prostatecancerunits.org to find the nearest specialized hospital for prostate cancer patients. There you will meet a team of experts in urology, oncology, radiology and psychology who, together with you, will advise what is the most appropriate treatment depending on the nature, dormant or aggressive, of the prostate cancer and thus avoid unnecessary drastic treatment options when unneeded and thus save the quality of life of the patients. This website is being created by the European School of Oncology (ESO), Milan. By Malcolm Duncan The Ordeal of Italian Cancer Patients During the course of 2015, 366,000 men and women were diagnosed as suffering from some form of cancer and the total number of patients is estimated at about 5% of the population. In the same period of time some 175,000 patients died. Two important Italian cancer associations (FAVO and AIOM) together with the CENSIS Foundation have publicly proclaimed the predicament of many Italian cancer patients due to the average time needed for the adoption of new cures, mainly of a bureaucracy origin, stressing waiting times for treatment and the need to close about 700 oncological centres due to a lack of the most modern equipment and specialists. ESO (European School of Oncology- Italy) has created an appropriate website (www.prostatecancerunits.org) in order to direct patients to the best equipped centres for prostate cancer patients. Source: Il Giornale 13/5/16 Communications : Tackling the Issue Roger Wotton, Chairman, Tackle Prostate Cancer, 4th May 2016 Tackle Prostate Cancer (Tackle) is the voice of prostate cancer patients and their families in the UK. As a National Federation, we only exist by virtue of our 80+ support groups across the country, representing some 15,000 members. Effective communications is a challenge, not just in dealings with the media, but also in making sure our organisation stays in touch with its grass roots - –the patients! So, how do we approach this challenge? Our overall strategy has three themes – Supporting Patients, Raising Awareness and Campaigning on Issues. Tying all three of these together is a communications strategy represented by the picture below: One key goal is to make sure we represent the best interests of our members. We have a unique regional structure whereby an individual from a support group in each region of the country steps up to be a spokesperson for support groups in that part of the country. This way we can stay in touch through regular teleconferences and workshops. We call this Regional Sensing. We also communicate directly with our support groups through regular email Support Group Briefings on particular topics of interest, or to gauge opinions on topics or developments. In addition we stay in touch with individual members through our quarterly “Prostate Matters Newsletter”. When it comes to working with the media, we often work in conjunction with Prostate Cancer UK, another charity which has significantly more resources available than Tackle does, and we leverage their media capabilities where we share a common viewpoint. We do, however, have our own Media Relations Support where we validate our external communications from a professional perspective and to achieve maximum impact. During the past year we have had increasing success in having articles published in various national newspapers including The Times, The Independent and The Guardian. We have also had an article published in a professional urology periodical. See http://trendsinmenshealth.com/article/the-gold- standard-prostate-cancer-journey-from-the-patients- perspective/. Our influence has also been felt with
  11. 11. EUROPA UOMO / Did You Know? N°2/2016 11 various UK Governmental bodies such as NHS England and the National Institute for Health and Care Excellence (NICE) where we are increasingly invited to offer submissions and views on various clinical and drug developments. It is very often the case that our media stories are derived from Patient Stories and Campaigns, where we can use our members’ personal experiences and local campaigns for national benefit. This includes making videos to help spread the word. See examples at https://vimeo.com/152961653 and https://www.youtube.com/watch?v=HxZP_ZXf5j8&fe ature=youtu.be. Working as a Federation it is important we send a consistent message out and have some uniformity across our 80+ support groups. To this end we provide a Group Website Template to help groups establish a consistent web presence. We also make sure all of our achievements and our progress reporting appear as WebNews Updates. Where we need to produce additional information, for example for partners of patients, or on topics such as travel insurance or maintaining good health we produce Awareness Leaflets which enjoy a wide circulation. Added to this we also offer Branded Merchandise, such as banners, flags, phone chargers, and branded give-aways such as pens, travel wallets and wristbands. Finally, we believe it is important for any national organisation to always remember the population it serves and so we have a policy of trustees visiting support groups to maintain this connection. We call these Trustees In Touch Sessions. Overall, we have developed this integrated communications approach to ensure we maintain an effective two-way exchange internally and to follow a professional approach externally, always remembering Tackle is the voice of prostate cancer patients and their families. Prostate cancer survivors and mental health Assessment and interventions on mental health of survivors are crucial to prevent depression "The following very explicit article appeared in the magazine EUT Congress News on the occasion of EAU's Congress in Munich 11-15th March 2016" Marie-Anne van Stam, Dept. of urology, UMC Utrecht Cancer Center, The Netherlands Cancer Institute Utrecht (NL) Co-Authors: J.L.H.R. Bosch, H.G. van der Poel, S. Horenblas, N.K. Aaronson Prostate cancer is the most prevalent diagnosed cancer in men (American Cancer Society, 2015). About one in seven men will be diagnosed with prostate cancer during his life. Fortunately, the average life expectancy of patients newly diagnosed with prostate cancer is a decade or longer (Ferlay et al., 2010). According to the American Cancer Society a ‘long-term survivor’ is a person who is alive five years after being diagnosed with cancer. Therefore, the majority of patients with prostate cancer will become long-term survivors. Men diagnosed with prostate cancer have higher levels of anxiety, depression and suicide compared to an age- and gender comparable cohort from the general population (Bennett & Badger, 2005; Mehnert, Lehmann, Graefen, Huland, & Koch, 2010). Ongoing assessment, identification, and psychological interventions have been found successful in relieving distress for prostate cancer patients and survivors (Skolarus et al., 2014). Unfortunately, they are inconsistently available in prostate cancer survivorship care. These interventions are especially important for prostate cancer patients and survivors who are at high risk for mental health problems (the target population). Therefore, in our study (collaboration between UMC Utrecht Cancer Center and The Netherlands Cancer Institute), we aimed to describe this target population and we further unravelled the long-term relation between prostate cancer and mental health. These general aims were divided in three research questions: 1. Are prostate cancer survivors more at risk for mental health problems than an age and sex
  12. 12. EUROPA UOMO / Did You Know? N°2/2016 12 matched reference group without prostate cancer?; 2.What are risk factors for mental health problems in prostate cancer survivors?; and 3. Do these risk factors differ from risk factors in the reference group? To answer these three questions we composed two groups. The first group, ‘The prostate cancer survivors’, consisted of 644 prostate cancer survivors. The second group, ‘Reference group’, consisted of 644 men from the general population with a comparable age but without a history of prostate cancer (Figure 1). ‘Mental Health’ is not something you can easily see. We used a standardized questionnaire, the Short Form (36) Health Survey to measure the quality of life of the men in the study. This respondent-reported survey contains a mental health scale (MHI-5). One can score between 0 and 100. A score of 52 points or less suggests severe depressive symptomatology (Ware, Snow, Kosinski, & Gandek, 1993). The next step was to perform analyses to answer the three research questions. First, we compared the mental health scores of ‘Prostate cancer survivors’ with the ‘Reference group’ (Question 1, Figure 1). We observed that our ‘Reference group’ had significantly better mental health scores compared to the ‘Prostate Cancer survivors’ (difference of -6.52, p < 0.01). This means that in the ‘Prostate cancer survivors group’ 14% of the men were suspected of having depressive symptomatology. This was only 6% in the ‘Reference group’ (OR 0.41, 95% confidence interval 0.28-0.60). Secondly, we identified prostate cancer survivors who were particularly at risk for mental health problems (Question 2, Figure 2). We observed six important risk factors: 1. Being a widower; 2. A low socioeconomic status; 3. Poor general health; 4. Bodily pain; 5. Urinary bother; and 6 - less sexual satisfaction. Health professionals should pay extra attention to survivors with these characteristics or health problems. These men are at risk to develop mental health problems. Lastly, we analyzed whether these risk factors in the ‘Prostate Cancer Survivors’ group differed from the risk factors in the ‘Reference group’ (Question 3). Two differences between the groups were observed. 1. In the ‘Reference group’ a higher age was a risk factor for mental health problems. No Association between mental health and age was found in the prostate cancer group. 2. A poor general health was a stronger risk factor in the prostate cancer group. In summary, prostate cancer survivors are more at risk for mental health problems. Therefore, this study stresses the importance of ongoing assessment and interventions focusing on the mental health of prostate cancer survivors especially for men who have to cope with additional physical, economic and emotional disturbances. Mental health problems are not only a problem for prostate cancer patients. Many other patients experience depressive symptoms possibly associated with the effects of a disease. However, possibilities to help these patients (e.g. by referring to a mental health professional) are often not well known by health professionals. Thinking about the answer to the following question might be the first step: What can you do in your professional setting when you suspect a patient of having mental health problems? Saturday, 12 March, Thematic Session 3, 17th International EAUN Meeting, Perspectives in prostate cancer care.
  13. 13. EUROPA UOMO / Did You Know? N°2/2016 13 Radiotherapy for metastatic prostate cancer T. Kiljunen, PhD, Adj. Prof, Medical Physicist T. Joensuu, PhD, Adj. Prof, Medical Oncologist Docrates Cancer Center, Helsinki, Finland For patients with metastatic prostate cancer (PCa) the median survival has conventionally been around 30 months when treated with hormonal therapy. The increasingly potential new systemic therapy options for metastatic PCa are now prolonging survival not by months, but by years. However, use of radiation therapy (RT) in the metastatic setting has been preserved almost exclusively for palliation of pain. Obstructiv e uropathy is the key urological complicati on of progressiv e PCa and associated with poor prognosis. RT is known to improve obstructive symptoms in up to 80% of patients. We started to use the radiation therapy already at 1995 in order to relieve the urinary retention with those men whose prostate cancer was locally progressed due to the fading efficacy of hormonal castration. With radical doses to the prostate tumors we got complete responses. So we started to think that it would be clinically more beneficial to give radical radiotherapy to the prostate in advance to prevent the retention later on during probable progression at the time of castration resistance. This experimental strategy has lately been demonstrated to dramatically reduce long-term mortality on locally advanced disease and to prolong survival of PCa patients with lymph node metastases. Besides the many achievements in systemic therapies also RT techniques have improved by the introduction of intensity modulated radiation therapy (IMRT) and most recently volumetric modulated arc therapy (VMAT). VMAT has been shown to improve RT of PCa by facilitating delivery of more conformal doses to planning target volume (PTV) and by reducing the dose of organs at risk. Moreover, VMAT has been proven to be an efficient tool when treating multiple metastases and complex disease, and even superior to Cyberknife in hypofractionated PCa treatments.
  14. 14. EUROPA UOMO / Did You Know? N°2/2016 14 When the treatment optimization and image guidance possibilities enabled by the present VMAT techniques are professionally used, it is possible to irradiate distant metastases simultaneously with the primary locoregional PCa. Our preliminary experiences suggest that choline-PET is a clinically useful tool when the aim is to delineate active prostate cancer targets most precisely. Giving a radical dose to the prostate will most probably give the best palliation, if urinary obstruction can be prevented while the total cancer burden is simultaneously minimized as the treatment is targeted to active disease. The recommended healthy tissue tolerances (Quantec) have not been exceeded even though our treatment volume is much larger than traditionally accepted. Also, our patients have reported no side effects due to the additional treatment targets. We conclude that the VMAT offers a good optimization tool for adding extra PTVs to the radiotherapy plan. Radiotherapy of bone metastases concomitantly with irradiation of the primary prostate tumor is a safe and well-tolerated approach and deserves to be studied in a randomized setting. Contact the authors for more details and check the related publication: Kiljunen et al. VMAT technique enables concomitant radiotherapy of prostate cancer and pelvic bone metastases. Acta Oncologica 2014, Oct 13:1-7. Figure 1. The axial (a, c, e) and coronal (b, d, f) dose distributions of 63 year old prostate cancer patient with CT + MR detected metastases in left ilium and acetabulum, and in right parailiac lymph nodes. Pre- treatment PSA was 250 μg/l and Gleason score 9. 1.5 years after the radiation therapy, the PSA was <0.1 μg/l, the bone metastases were sclerotic, and the lymph node metastasis shrinked. Image courtesy of Acta Oncologica. SECRETARIAT Europa Uomo Lange Gasthuisstraat 35-37 2000 Antwerpen - Belgium Tel: +32 3 338 91 51 Fax: +32 3 338 91 52 europauomo@skynet.be www.europa-uomo.org
  15. 15. EUROPA UOMO / Did You Know? N°2/2016 15 Members events in 2015 and proposals for 2016 (part II) AUSTRIA by Ekke Büchler Selbsthilfe Prostatakrebs Austria is active both nationally and internationally, above all to favour the further development of eastern European prostate cancer associations. We organize monthly lectures for our members on topics like: “Cancer – and what does the brain say?”; “Incontinence – a burden for PC patients”; and on the latest therapies such as “ Castration resistant PC patients”. Last December Prof. Michael Marberger was nominated Honorary President of our association in recognition of his contribution to solving the problem of prostate cancer and to the development of our national prostate cancer association. In the same month we launched our new website www.prostatakrebe.at. In March 2016 we participated at the celebration of the tenth anniversary of Europa Uomo Slovakia. We shortly expect to get rehabilitation authorization according to the German Guidelines S3. The Medical University of Vienna has proved of great help in achieving this objective. CZECH REPUBLIC By Dalibor Pacik Europa Uomo CZ activities in 2015:  Auspices of project EUCZ by Mayor of Brno  Re-edition of brochure Prostate for men and women who love them (internet version and sent upon request free of charge also as hard copy)  Educational webcast Advance prostate cancer – lectures update bone care, quality of life, urinary incontinence  Support of Facebook EUCZ pages  Calendar 2016 with prostate diseases educational text (approx. 50,000 distributed across pharmacies in CZ)  Educational brochure about BPH (approx. 50,000 distributed across waiting rooms of GPs and 50,000 by means of pharmacies) SPAIN FEFOC by Tania Estape The Spanish Europa Uomo supporting entity, FEFOC, private not for profit non-governmental foundation, devoted to cancer, was set up in April 1996. So, we have reached 20 years of non-stop activities and we are very happy communicating it to all of you. In those 20 years FEFOC's main goals have been prostate and breast cancers. Programs for older patients, supporting relatives and minorities' specific oncology problems are also attended to. FEFOC runs five online pages, produces and diffuses educational material and gives any kind of support. Our main values are independent judgment and evidence based activities. And we are very proud to represent Europa Uomo in Spain. We are most grateful to the precious contribution of our loved friend and colleague, Dr Elias Valverde now replaced by Dr Tania Estapé. We are planning for a most positive future for Europa Uomo Spain and a very bad one for prostate cancer, as in another 20 years this disease will hopefully be no more than a past nightmare just to tell our grandsons and granddaughters: “...Do you know that years ago...”
  16. 16. EUROPA UOMO / Did You Know? N°2/2016 16 Overview Articles 2015 N°1 – March 2015 Depression and Anxiety: two sides of the same coin; Depression (1) (T. Estapé) The Humanisation of Cancer Care (M. Duncan) Union of International Associations (UIA) Round Table, Europe – Dublin, November 2014 (F. Brennan & J. Dowling) PCa Europe 2014 Conference (B. Dourcy-Belle-Rose) The Hippocratic Corner (L. Denis) N°2 – June 2015 Depression and Anxiety: two sides of the same coin; Anxiety (T. Estapé) Common Shortcomings in Prostate Cancer Care (M. Duncan) After Twenty Years is There a Future? (J. Dowling) Clinical Trials Registration & Reporting The Austrian Charter Demands to the Austrian Health Care relative to Prostate Cancer (E. Büchler) Every Moment Matters, an advanced prostate cancer disease awareness programme, and Every Voice Matters survey results (M. Duncan) Cancer Care and Support Services in Ireland (J. Dowling) East Surrey Hospital Apology over cancer patients’ care (BBC News) Prostate Cancer sufferer: “It’s either buy the drugs, or die” (The Telegraph Online) The Hippocratic Corner: “On Prostates and Hormones” (L. Denis) Special issue EPAD 2015 How Does a Patient Organisation Survive? (J. Dowling) N°3 – September 2015 The Strategic Plan in brief (M. Duncan) A plea to the European Parliament (M. Duncan) United Against Prostate Cancer (M. Duncan) Prostate Cancer Units (PCUs) (M. Duncan) Prostate Cancer Units (R. Valdagni) “We have to work as a team”; Per-Anders Abrahamsson former Sec-Gen of the EAU retires (CancerWorld) All Trials (J. Dowling) About Prostate and Hormones II: Anti-Androgens (L. Denis) N°4 – December 2015 Raising the Cancer Patients’ Voice (G. Feick) Back to nature (H. Tavio) Patients’ values and preferences incorporated into treatment decisions (K. Tikkinen) C61. One diagnosis – many diseases. Prostate Cancer has many faces (P. Hervonen) Denial (T. Estapé) One Island – Two experiences of Prostate Cancer (J. Dowling) EUPATI – training programmes for patient advocates (J. Dowling) About Prostate and Hormones III: A new direction? (L. Denis) www.europa-uomo.org Content: * About Manifesto Statutes and Bye-laws Board news Code of Conduct Funding and Sponsors * Our members * Newsletters * News *Events *Contact “The views expressed in this newsletter are not necessarily the views of Europa Uomo” “Did You Know?” European Newsletter contacts and email addresses Austria: Ekkehard Büchler, efb@gmx.com; Belgium: Henk Van daele, henk.vandaele@telenet.be; Bulgaria: Alexander Marinov, alpemarinov@abv.bg; Cyprus: Andreas Moyseos, andreas.moyseos@cytanet.com.cy; Czech Republic: Dalibor Pacík, dpacik@fnbrno.cz; Denmark: Thorkild Rydahl, tr@trlaw.dk; Finland: Hannu Tavio, hannu.tavio@gmail.com; France: Roland Muntz, info@anamacap.fr; Germany: Günter Feick, g- feick@gmx.de; Hungary: Imre Gaál, gaal@rakliga.hu; Ireland: John Dowling, euomosecjd@gmail.com; Italy: Malcolm Galloway Duncan, mqi@hotmail.co.uk - europauomo.italy@virgilio.it; Lithuania: Paulius Rakštys, paulius@hubertus.lt; Norway: Nils Petter Sjøholt, nils@prostatakreft.no; Poland: Tadeusz Rudzinski, stowarzyszenie.gladiator@poctza.fm; Portugal: Joaquim da Cruz Domingos, cruzdomingos@outlook.pt; Romania: Toma Catalin Marinescu, rokapros@yahoo.com; Slovak Republic: Josef Blazek, josef.blazek@vsbm.sk – uomosk.3@gmail.com; Spain: Jordi Estapé, jestape@fefoc.org; Sweden: Calle Waller, calle.waller@partnershipforeurope.se; Switzerland: Max Lippuner, info@europa-uomo.ch; The Netherlands: Kees van den Berg, voorzitter@prostaatkankerstichting.nl; United Kingdom: Ken Mastris, ken.mastris@btinternet.com.

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