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Did You Know - March 2016

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Newsletter Europa Uomo

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Did You Know - March 2016

  1. 1. EUROPA UOMO / Did You Know? N°1/2016 1 Europa Uomo’s new board as off the General Assembly, June 20-21, 2015: At the occasion of the annual EAU congress in Munich last March 11-15, 2016, the board of Europa Uomo had a successful meeting. We thank the EAU for their hospitality and support. Contents p.1 Editorial p.2 Chairman’s Letter p.3 Sweden’s Astonishing Membership Success p.5 Improving partnership to improve health outcomes p.6 European Alliance for Personalised Medicine Prof. M. Marberger: A Lifelong dedication to Urology p.7 News Flashes p.8 The UK ranks almost last in Europe for cancer survival rates p.9 Standardizing Patient Outcomes Measurement p.10 Active Surveillance for los risk prostate cancer Blood test to avoid needless prostate surgery p.11 Self-esteem in prostate cancer: empty nest syndrome p.12 Members events in 2015 and proposals for 2016 p.15 Initial report of the activities carried out by the new LOCs between November 2015 and March 2016 Editorial by Malcolm G. Duncan, the Newsletter Editor I wish to start the Editorial Note on a positive note informing our member associations of the astonishing success of the Swedish association (PCF) in achieving new membership which, in spite of a fairly small population (less than 10 million) is now composed of nearly 10.000 direct members and another 11.000 indirect members or followers through the co-operation of two Facebook groups, and growth continues at an average annual rate of 5- 10%. On the contrary in several other countries there is an ongoing fight for new members, notwithstanding the dimensions of the problem and future growth prospects. One of the main initiatives planned by Europa Uomo Italy to increase membership and establish other centres throughout Italy is the organization of a national tour of a specially equipped van (see the picture under the column “Member Events”. Did You Know? – N°1 – March 2016 The voice of prostate cancer patients across Europe
  2. 2. EUROPA UOMO / Did You Know? N°1/2016 2 The Swedish success is partly due to the existence of 26 local groups spread across the country, good relations with the political and health authorities, and probably to a fundamental cultural difference between north and south Europe. It seems that Scandinavian men are more inclined to open up and speak about prostate cancer, at times encouraged by their wives or partners. Whereas screening is taken for granted by most women, it is something which men have to struggle with before coming to a decision. Nevertheless mortality is still high in Sweden mainly due to late diagnosis where the cancer has already metastasized. In fact 2,000 of the average 2,400 annual deaths are mainly due to late discovery. Not surprisingly early detection/screening is one of their principal priorities. Another success story is surely that of Tackle in the UK which has established an ongoing contact with the British TV, radio and press. This has surely led to ever more frequent contacts with government agencies on the development of standards and the availability of drugs, especially for advanced prostate cancer. Other news came from Belgium, Portugal, which expressed its gratitude to both Bayer and Janssen for their co-operation, Slovakia and Spain. Besides the normal helpline service of each national association they organize and finance yearly one week cures in Slovak SpA to encourage better social and health conditions. Spain communicated the publication and distribution of its Prostate Cancer Code to public health care centres and the publication of its Prostate Cancer booklet We then have two articles of a psychological nature, one written by the well known Italian psychologist, Lara Bellardita, together with her assistant Julia Menichetti, on the importance of also creating a close relation with a psychologist in order to deal with the stress which the word cancer tends to cause and so become partners in navigating the illness journey. Dr Bellaridta ends her article emphasizing the important role of the media by increasing public awareness. Tania Estape who contributes to all issues stresses the importance of self-esteem and ways and means to achieve this goal. In the column named “News Flashes”, we mention initiatives to favour the internationalization of medical research; a new test which could save thousands of lives; an initiative by EMA to assure the safety of drugs and medicines produced by the pharmaceutical industry; a new two-drug combination which should boost survival in patients suffering from metastatic prostate cancer; and, last but not least, the decision of the USA to shelf, at least for the moment, the idea of abolishing PSA screening. In a separate article The Times reports of a new simple blood test , discovered and led by the University of Copenhagen, which can identify low and high risk prostate cancers and thus save patients from unnecessary and risky surgery. A brief mention was made of the third conference organised by ESO in Milan of the role of Active Surveillance. Two reports, one by the OECD and the other by the European Journal of Cancer, strongly criticize the level of prostate cancer medical services in the UK and of its very poor survival rates at European level. Another article entitled “Standardizing Patient Outcomes Measurement”, produced by the New England Journal of Medicine, stresses the importance of establishing internationally agreed standards which will surely speed up measurement, share and compare outcomes more efficiently and which will accelerate international care improvements. ICHOM has already convened several meetings on the subject together with risk factors. The Newsletter ends with the many activities and conferences where Europa Uomo was represented by the new Liaison Officers Club (LOCs), recently set up and led by André Deschamps, one of our Deputy Chairmen. In this manner Europa Uomo is able to participate in far more initiatives dedicated to Prostate Cancer than was possible with a small 7 man Board. Our compliments go to the enthusiasm already clearly discernible from the activities already carried out by this new team. The Chairman’s Letter by Ken Mastris Dear Colleagues and Friends, As I write this short introductory letter addressed to “Did You Know” readers, the first signs of approaching spring can be discerned with pleasure, to begin with the lengthening of daylight hours. March is also Prostate Awareness celebration month in the United Kingdom and the social media are busy promoting this Important annual event. First and foremost, I must thank all our members spread all over Europe for their constant support and appraisal of
  3. 3. EUROPA UOMO / Did You Know? N°1/2016 3 Europa Uomo and I look forward to our annual assembly in Hoorn (The Netherlands) next June to meet representatives from all member associations. We are in the midst of a difficult social and economic period in which funding risks linger in the background and we, like other voluntary patient groups, are making every effort to assure our continual financial support by our sponsors like EAU and ESO and others. Our vision and mission are clear to us and much effort has been put into finalizing our strategic priorities for the next few difficult but promising years. Thanks to the Editorial team manned by Malcolm Duncan and our website coordinated by Nancy Verbrugghe, thanks to which our members and the outside world are well aware of our commitment to improve patient care in the whole of Europe, and thus overcome inequalities of treatment and our final and most ambitious objective: “A world in which no man suffers or dies from prostate cancer”. This has made us reflect seriously on the need to achieve closer relations with other patient organisations intent on improving health care in other common prostate diseases. My most sincere appreciation goes to our Board as well as to our newly appointed Liaison Officers’ Club directed by André Deschamps, our deputy chairman. The Board can no longer deal with all the efforts which improvements in prostate cancer care demand. My personal thanks also goes to Louis, Brigitte and Anja who have greatly contributed to the success already achieved by Europa Uomo since its inauguration in 2003. Sincere best wishes to you all. Sweden’s Astonishing Membership Success Calle Waller, vice chairman, PCF & Stig Lindahl, resp. international affairs In Sweden we recently passed a dream-line goal regarding the number of registered members in the Prostate Cancer Alliance (PCF). We are now a bit more than 10.000. This must also be seen in an international perspective, as our country has slightly fewer than 10 million inhabitants and the average dimensions of prostate cancer is around 95.000 patients. Another comparison is that the number of patient members is now only slightly fewer than in the corresponding organisation for breast cancer. On the contrary in many other countries there is a fight for members by many similar associations. Our Newsletter editor therefore thought it might be interesting to try to find an explanation of the Swedish success story. PCF was formally founded 10 years ago by a number of local patient associations, some of which have now celebrated their 20th anniversary. Today the country is covered by 26 local associations of different sizes. PCF is – similar to Europa Uomo - an umbrella organisation with a yearly assembly, an elected Board and an office with a staff of three persons. Furthermore a quarterly journal is distributed to all members, urologists and others and information/communications is offered by internet, www.prostatacancerforbundet.se with 120.000 visits last year and www.facebook.com/Prostatacancerförbundet- 225788517474143/timeline/?ref=hl with 11.000 followers. The local associations are funded mainly by membership fees and local subsidies. The national level association is mainly financed by governmental subsidies, collections from private persons, companies and lotteries etc. This is utilized for our operations and research fund. Some of our activities are also co-funded by the pharmaceutical companies. Originally our local associations were initiated following discussions between doctors and patients, feeling the need for peer-supporting activities for those who recently just got the diagnosis and those who had started their treatment. This is also still the primary task for our local activities, i.e. to offer personal support, information, and fellowship to make it easier for the patient, his relatives and others close to him to cope with the disease and its consequences. In order to fully understand this development you have to go into a deeper analysis. First of all there is probably a fundamental cultural difference between north and south Europe, i.e. that is for some reason it seems a bit easier for men in Scandinavia to open up and talk about this disease. Certainly also Swedish men experience the feeling that problems beneath the belt are shameful, but the tendency leads to more openness and social acceptance. This leads men to dare to look for others with the same problems and even to join and become active in an association. Without any doubt when more men dare to be open-
  4. 4. EUROPA UOMO / Did You Know? N°1/2016 4 -minded, the easier it becomes to join prostate cancer movements. Another important factor is the involvement of those close to the patients: in fact wives, girlfriends and partners play an important role in allowing the men to be open and “frank“ about prostate cancer. We have seen a number of times, how the ladies push their husband/partner to get more information about the cancer and do not take no as an answer. Screening, that women take for granted, is for the men something they have to struggle with. The waiting time for prostate cancer is 3 times longer than the average waiting time for cancer in general, and is a worrysome period where the support of a partner is very important. Another cultural condition is that Scandinavians are used to making decisions based on dialogue and general consensus rather than obeying orders from above. The role of the doctors is to help us to cope with our health problems rather than to give orders on how to do it. One important and long-term tendency is that the health care system increasingly asks for patient participation in discussions on how the care shall be conducted and evaluated. After being rather exceptional it is now more and more common that our associations are involved in delivering patient reported problems, shortcomings, imperfections and suggestions of improvements in health care. This happens both at national level as well as in the activities of local clinics. But the role as Patient Advocate gives us quite new priorities. It is no longer enough to base ourselves on one’s own personal experience of the disease and the health care systems. Now we have to widen our perspective and learn more about the situation from other patients, about the disease all over the world and about the different health care systems. For that reason PCF has a new role in supporting the local associations with strategies and training activities to raise the competence among patient advocates on issues relating to all stages of the disease, as well as about the health care structure and governance etc. In return we perceive a greater respect from the professionals, a closer cooperation and a more positive attitude to the patient movement – which in turn is attuned to new patients. A new tool is being developed, which is a knowledgeable package with information about the disease and health care systems, tips on coping strategies, contact information to the association etc. It is referred to more and more by the local associations. Thanks to a rising patient competence we are becoming stronger in negotiations with decision makers and politicians. A great challenge is that people in common with politicians and officials have a limited knowledge about prostate cancer. One of the consequences of this situation is that mortality is high in Sweden with an annual average of about 2,400, almost 2 000 are due to late detection, i.e. when the cancer has already metastasized. In spite of this many people regard the disease as fairly mild, compared to other cancers. One goal of high priority for PCF is therefore to work for an ever better dissemination of facts about the disease to the public at large. It is a basic task during the whole year but is intensified in a limited period, usually up to September, the international prostate cancer month, with the blue ribbon as its symbol. A new approach is to switch over to November-December, the Moustache-battle, with widespread media activities, with well known men as models, and a lot of local events. We perceive a greater and more positive reaction to this, above all in the younger generation. The moustache pin is also more popular and generosity to charity is greater a bit closer to Christmas. The growing number of members is steady at national level, between 5-10% yearly, from about 6 000 in year 2010 to more or less 10 000 today. However, at local levels we find great variations from one association which has declined by 25% to others that have grown by more than 200%. Maybe, we can learn something from this. There is an obvious correlation to growth where the associations have focused more on going public, offering informal encounters and conferences for members and others, as well as participated in different public meetings where we have a very proactive approach to politicians and officials in the caregiving organisations. To summarise, the development in Sweden is explained partially by a favourable cultural climate, partially by a high and rising level of local and dedicated work targeted to a more intimate cooperation with the different health care actors. At national level the political work is actually dominated by issues such as early detection/screening, the health care organisations, quality parameters in treatment, waiting times and access to the new medicines. 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
  5. 5. EUROPA UOMO / Did You Know? N°1/2016 5 Improving partnership to improve health outcomes Lara Bellardita, Julia Menichetti Project “For a shared understanding: men and prostate cancer” 1 Prostate Cancer Program, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan lara.bellardita@istitutotumori.mi.it Prostate cancer: disease vs illness The word prostate cancer (PCa) can evoke very different meanings and scenarios in the actors that are involved in the clinical consultation. For the doctor, the word can refer to abnormalities of the structure and function of body organs and systems that he is called to restore. For the patient, the same word can mean a strange feeling of powerlessness and anxiety or something to fight. During the clinical visit, the attention – both of patients and doctors – is on the ill part of the body. The main expected work of the doctor is to define the optimal treatment, and the main one of the patient is to adhere to this optimal treatment. However, this medical vision does not reflect entirely what really happens during the clinical consultation. Scholars and clinicians are more and more recognizing that curing the disease is not always only a medical matter. Indeed, what patients feel and experience concerning their disease and the relationship they establish with the disease can make the difference in the disease course and substantially change the clinical pathway. Patients might consequently choose not to adhere to treatments, or conversely can be highly engaged in health- promoting behaviours and reduce the burden of the disease. The question now is how can patients and doctors become partners in navigating the illness journey. Navigating the PCa journey: coping with a shared responsibility Playing an active role in the healthcare journey starts from day one for PCa patients and involves a number of challenges and emotions, which highly request a patient-centred attention. As mentioned before, hearing the term cancer can lead to a state of crisis for an individual and his family because most people 1 Acknoledgements to Foundation I. Monzino are not immediately equipped to understand their diagnosis or to identify options for moving forward. Surely, few words rival cancer for pure emotional impact: a cancer diagnosis is stressful because of the substantial associated threats (e.g. survival, happiness, well-being of family members). Distress, anxiety and depression are common in men recently diagnosed with PCa, and the psychological impact of the diagnosis of PCa has been widely explored in literature. Thus, first of all, patients need to cope with the fact that they are ill. Most research has been addressing how patients cope with cancer diagnoses and the progression of the disease. The challenge, however, does not end here. In fact, contained within that generally stressful situation there may be several emotion-laden decisions to be made, most notably decisions regarding potential treatment options (e.g., surgery vs. radiation, getting adjuvant therapy or not, receiving treatment at a university vs. a community hospital, even whether to start treatment on a loved one’s birthday). Patients need to come to terms with the fact that there are several therapeutic options, and that they are being asked to take an active role in decision-making, weighing risks and benefits of different treatment approaches in order to make that decision. Those risks and benefits have to be weighed from their own perspective and for the potential outcomes that are relevant for them. Patients’ preferences, needs and values are relevant. That means for patients that they need to cope not only with the diagnosis and the illness, but also with the request of sharing responsibility for choices that concern their personal future. This can be highly demanding for patients and can easily lead to decisions based on trying to avoid the emotions that are implied in the cancer adjustment and decision making process itself rather than based on their real priorities and preferences. Indeed, decisions regarding cancer control are likely to be among the most threatening decisions that many individuals will ever make, and, as when receiving a cancer diagnosis the normal ability to make decisions and thinking clearly could be at least initially impaired, some patients might need to take the road with less emotional distress and ask for advice. For example, a patient may avoid the stress associated with confronting difficult trade-offs by focusing on decision criteria such as a doctor’s recommendation or the status of a particular treatment as the “best established” or “most technologically advanced”. Avoidance of thinking about the diagnosis, the treatment choices to be made and their consequences can however heighten a negative psychological adjustment and lower mood
  6. 6. EUROPA UOMO / Did You Know? N°1/2016 6 and physical health. For patients to express their own needs, fears, expectations, and preferences is important in terms of health outcomes. Active approaches to coping with PCa (e.g., problem- focused, and emotion-focused coping) can help patients to be healthier both psychologically and physically, and can facilitate a return to pre-cancer activities. Navigating the treatment choices and the healthcare pathway can be difficult for patients and can require patients to have an equipment of skills, knowledge and internal and external resources that can be difficult to have immediately after the shock of the diagnosis. Evidence shows that these skills can be learned and trained, even among patients who are initially less willing, less capable or less literate. Surely, reaching a shared responsibility over threatening health choices and enabling patients to play an active role in their care is not so easy and requires patients, families and healthcare professionals to contribute to a shared pathway of discussion and dialogue that does not end once the shock of the initial diagnosis wears off. Being equipped to get on board Ideally, patients are active and autonomous actors of the care process, ask questions and give feedbacks, are able to properly communicate with healthcare professionals, and express their worries, preferences, and opinions to clinicians. The advantages for patients to have an active role in their care and to be autonomous actors of health and well-being trajectories can be huge, not only in terms of improved satisfaction and better health outcomes, but also in terms of reduced burden and costs for healthcare systems. Nevertheless, “patients’ lack of experience with the health care delivery system and illness can impede their active participation”. In order to properly manage and navigate the PCa journey, patients need to actively cope both with cancer diagnosis and decision-making trade-offs and need to be properly equipped. This equipment can include several tools. First of all, literature shows how patients – and their families - need comprehensive and understandable information available to them. This facilitates cognitive processing of information, which may lessen patient distress over time. So, patients have to become PCa literate. Surely the doctor is in the first line for giving this information, but newspapers, television and web are also important channels of information that patients use to understand their health situation and all this media should be aware of the responsibility they have in educating patients. Men also need someone to walk them through the decision process and the care pathway, someone supportive and receptive to their own needs. Healthcare professionals have a unique challenge in this sense, but also friends, family and peers are important. To resume, becoming engaged in one’s care path is a pivotal challenge needing collaborative efforts of all care actors across the continuum of care. Both physicians and patients have a key role, and communication between them is crucial for an effective partnership. European Alliance for Personalised Medicine Extract from the EAPM Bulletin, Issue 11, January 2016 Details of the new General Data Protection Regulation, which will ensure that valuable medical data can be collected, stored and shared, were made public late last year and Alliance made an important contribution together with representatives of patient associations, researchers, scientists and healthcare professionals such as ESMO, EORTC, EPF, EHA, EAU, Science Europe and Wellcome Trust. This led to around 4,000 amendments to the original draft. This was followed by numerous meetings with MEPs on critical points. A conference entitled “Making Access to Personalised Medicine a Reality for Patients” addressed obstacles to the integration of personalized medicine in EU Health-Care Systems, identified best practices and their added value, and outlined the potential benefits of personalized medicine for public health and its impact on policy-making in the EU. The Americans are moving quickly and have come to some obvious conclusions including that health equals wealth. That investment in research and innovation, alongside laws and rules that are fit for the purpose, reflect the swiftly changing world of medicine, and are therefore vital. Prof. M. Marberger: A Lifelong dedication to Urology Selbsthilfe Prostatakrebs is most happy to see that our honorary member, Prof. Michael Marberger is now well again after a CVA in April 2014 while he was attending EAU's annual congress in Stockholm. At the event recently organised in his honour by the Medical University, we were happy to avail ourselves of this occasion presenting him with
  7. 7. EUROPA UOMO / Did You Know? N°1/2016 7 an honorary membership certificate of Selbsthilfe Prostatakrebs Austria. NEWS FLASHES A Great Step Forward in the Internationalization of Medical Research By Malcolm Duncan A great new initiative devised by ASCO DIRECT LINE and supported by Janssen will be inaugurated at the 2016 Genitourinary Cancer Symposium which will shortly be held in San Francisco, USA. It will enable European clinicians in six different countries (Austria, Belgium, Germany, the Netherlands, Switzerland and the United Arab Emirates) to assist directly at the American symposium, thanks to video-broadcasts of data, presentations and real time connections with experts onsite. That is without the need to travel to the American symposium. This important communications innovation aims to stimulate greater learning and co-operation amongst international clinicians. We trust this will ultimately lead to improved medical results and the quality of life for genitourinary cancer patients across EMEA (European Agency for the Evaluation of Medical Products). Expensive new drugs may be offered to NHS patients during trial periods The Guardian reports that the NHS (the British National Health Service) has recently decided that new cancer drugs which show promise, but are considered as too expensive for NHS coverage, may be made available for patients for two years to gain data on their effective value. The proposal is an attempt to solve a thorny ethical and political issue which has provoked damaging headlines for the British government for many years. NICE (the National Institute for Health and Care Excellence) wants to be able to assess that the new drugs are sufficiently cost-effective for NHS use. In fact many new drugs are launched with price tags that exceed Nice ceilings £30/50,000 in the case of end-of-life drugs. In 2011 a Cancer Drug Fund was launched by David Cameron amounting to £200m a year to finance drugs rejected by NICE on cost grounds. However this sum has been notably exceeded each year up to as much as £340m, so in future it will come under the auspices of NICE which will evaluate the true value and cost of each drug This is a first step in the need for Health reform but a lot still remains in order to catch up on the rest of Western Europe in the field of cancer care. The Test that could save thousands from aggressive Prostate Cancer The Telegraph reports that researchers at Nottingham Trent University have recently discovered that proteins PMI and CRM-1 play a crucial role in allowing the disease to grow rapidly and in Britain alone lead to as many as 10,000 deaths per year. Consequently, scientists can now discover who is likely to suffer from aggressive cancer and so achieve earlier treatment and care. They hope that thanks to this forewarning they can find a way of preventing the two proteins from triggering the lethal spread. This discovery may reassure most of the average 42,000 British men who annually are diagnosed as having Prostate Cancer which is the most common cancer for English men and kills one in four. It is however urgent to identify new diagnostic and prognostic biomarkers for the prompt identification and treatment of such patients. However, fortunately, many prostate cancers denote very slow growth and are best left alone. PSA TESTS SURVIVE IN THE UNITED STATES OF AMERICA The American medical and political authorities appear to have had second thoughts on the idea of abolishing PSA screening tests at least for the immediate future. A new two-drug combination boosts survival in metastatic prostate cancer CancerConnect News has given new hope to patients suffering from newly diagnosed metastatic hormone- sensitive prostate cancer. According to the New England Journal of Medicine and a report by Dr Christopher J. Sweeney of the Dana-Farber’s Center (USA), the new treatment, which had first been tested on 790 patients, was perceived as most successful. A combination of two drugs dramatically notably increased survival benefits. Patients who underwent 6 cycles of the chemotherapy drug docetaxel along with a hormone-blocker survived for a medium of 57.6 months, more than a year longer than patients who were treated simply with the hormone-blocker. A treatment which previously had been applied for decades.
  8. 8. EUROPA UOMO / Did You Know? N°1/2016 8 Medicine Smuggling A leading Italian daily “Il Giornale” reported in January of this year that the enormous difference between medicine prices in Italy and France, sometimes as much as 50%, has led to a very lucrative smuggling of medicines between Nice and Milan. For example, a packet of Aspirins costs 16 Euros in Italy and only 8 Euros in France. The automatic question is what is the motive for such a price difference which renders the Italian health system more expensive than probably necessary. According to an OECD report the UK ranks poorly in medical services Report Summary by Malcolm Duncan Notwithstanding the opinion recently expressed by a Department of Health spokesman who said that they are making every effort to make the NMS the safest Health Care system in the world and have recently invested £10 billion for that purpose, the OECD report, while admitting that in some areas British health care is the envy of the world, all in all, while access is generally good, it continues to have what is considered the worst health care system in the developed world. The study covered 34 countries and the explanation given was limited investment. It is estimated that they need about 75,000 additional doctors and nurses. Hospitals are so short staffed and under-equipped that people are dying needlessly. While the OECD average number of nurses and doctors is respectively 9.1 and 3.1 per 1,000 population, the figures for the UK are respectively 8.2 and 2.8. The UK also does not excel at delivering high-quality acute care either and staff are too rushed to improve levels of care. Mark Pearson, OECD Deputy Director for Employment, Labour and Social Affairs confirmed this opinion. While heart attack survivals are improving, the UK is ranked 20th out of 32 countries on heart attack deaths. It is still lagging behind the top performers on survival rates following the diagnosis of different types of cancer: 21st out of 23 countries on cervical cancer survival, 20th out of 23 on breast and bowel survival and 19th out of 31 countries on stroke survival. Mark Pearson admitted that the UK was doing very poorly in preventing ill health by tacking issues like obesity. The OECD called for urgent attention to combat high levels of smoking and also the high level of drinking alcoholics. Nigel Edwards, Chief Executive of the Nuttfield Trust think tank complimented the junior doctors for their efforts as, he said, they are the backbone of hospital workforces, in an attempt to dissuade them from taking trade union action following a recently agreed 11% pay rise and a curb on unsociable working hours. However the OECD report complimented the UK health system regarding waiting times for hip and knee replacements and for vaccinations. On the contrary it is bottom of the list for survival from colorectal, breast and cervical cancers, though some improvement had been fortunately noted. The UK ranks almost last in Europe for cancer survival rates Summary prepared by Malcolm Duncan According to a recent report published by the European Journal of Cancer, which covered 29 European countries and over 20 million cancer patients, the UK has the worst survival rates for cancer in western Europe.(see tables below), and while all other countries had shown improvement since the previous study in 2007, possibly favoured by two new drugs to fight liver cancer and cabozantinib which blocks enzymes which drive tumour growth and slowed disease progression twice as long as standard treatment. Unfortunately this was not the case for the UK which showed little or no change. Survival rates in Sweden were almost a third higher than in the UK. Only patients in Eastern Europe and the Balkan states fared worse. One of the major UK problems is the poor rates of early diagnosis with an average of one out of 5 cancers not being discovered until the patient arrives at Accident & Emergency hospital departments. In other countries testing was offered much earlier. This opinion was shared by a leading researcher Dr. Milena Sant who also said that this naturally reflected on survival rates.
  9. 9. EUROPA UOMO / Did You Know? N°1/2016 9 Powered by Factmint The reasons for this regrettable situation is the limited awareness of people of the signs and symptoms so that cancer can be diagnosed earlier by GPs and therefore treated more effectively. Recently the British Health Secretary announced that as from 2020 patients suspected to have a cancer will be given a diagnosis or an all-clear reassurance within a month. Powered by Factmint A detailed examination of the above report shows that average 5 year survival rates in the UK were calculated at 50.2% compared to 64.7% in Sweden. In fact France, Italy and Germany all did far better whereas the UK was on par with the Czech Republic. In the case of prostate cancer the five year survival rates of England, Scotland and Wales were respectively 80.3%, 78.8% and 78%, compared to 90.2% in Austria, 90% in Finland and a European average of 83.4%. Standardizing Patient Outcomes Measurement An extract from the New England Journal of Medicine 2016 (374: 504-506) Dear Ladies, Gentlemen and Colleagues, I have asked our editor to include an extract of the above report in the next number of our international Newsletter, and advise you to then read the full version. Prostate Cancer is one of those 12 diseases for which standard sets have already been developed. Gunter Feick, BPS Chairman From the arc of history it is increasingly clear that evaluating health care is slowly shifting its focus from the volume of services to the value created for patients. Experience in other fields suggests that systematic outcomes measurement is the sine qua non of value improvement. In fact the lack of outcomes measurement has often slowed down reimbursement reform and led to hesitancy among health providers to embrace accountability for results. This therefore requires a means to set standards, both nationally and globally to enable the measurement and comparison of health outcomes. Efforts on outcome measurements are overwhelming concentrated on the clinical status (e.g. survival and objective outcomes which are easily identified by laboratory tests) but require long follow-up periods for meaningful evaluation of treatment results. Though Patient-reported outcomes are beginning to be measured, they are not yet routinely captured for most conditions. Consequently each organization that sets out to measure outcomes has an arduous task in agreeing what to measure and how. The time has come to change this trajectory. Providers, payers, patient advocacy groups and regulators must co-operate in order to create a minimum set of outcomes for each important
  10. 10. EUROPA UOMO / Did You Know? N°1/2016 10 medical condition. Agreed standards will surely speed up measurement, share and compare outcomes more efficiently. This will accelerate care improvements. The International Consortium for Health Outcomes Measurement (ICHOM) has already convened meetings of experts together with patient representatives to outline minimum standard outcomes and risk factors. ICHOM has already established or is in the final stages of approving more than 21 sets covering about 45% of the disease burden of the United States of America and of other high-income countries. As the adoption of these sets has proved rapid, the indispensable tools and methods are being implemented including high technology software in order to automate outcomes data collection and aggregation. Though universal measurements and reporting of outcomes will not happen overnight, they believe that implementing standard sets of outcomes is a decisive step in the right direction. www.europa-uomo.org Active Surveillance for low risk Prostate Cancer ESO (European School of Oncology) organized its 3rd conference on the above subject in the IRCCS Istituto Nazionale dei Tumori of Milan on 12th and 13th February. The meeting was co-sponsored by EAU and the Europa Uomo patient group. In another article in the present issue we have discussed the need for urgent intervention for high risk prostate cancer whereas, in the case of low risk PC, it is a question of wait and see, as there is otherwise a danger of over- treatment and over-diagnoses. PSA or MRI monitoring was advised by speakers whereas repeated and unnecessary biopsies were strongly cautioned, as they can cause harm, pain and even infection. In fact patients suffering from low risk prostate cancer frequently eventually die for other causes. There is now a much reduced number of deaths from prostate cancer, estimated at about 2.5%, and this notable improvement in the care of prostate cancer has so far proved detrimental to Europa Uomo’s request for public financing in spite of two encounters with MEPs (Members of the European Parliament). See Movember GAP database for further PC details. Faculty: C. Bangma (NL), L. Bellardita (IT), L. Bokhorst (NL), A. Briganti (IT), S.M. Bruinsma (NL), S. Carlsson (SE), P.R. Carroll (US), L.J. Denis (BE), J. Humblet (BE), J. Hugosson (SE), G. Jenster (NL), L.H. Klotz (CA), I. Korfage (NL), A. Lane (UK), C. Moore (UK), A. Ouzzane (FR), T. Pickles (CA), A. Ranniko (FI), M.J. Roobol (NL), I. Schoots (NL), A. Semjonow (DE), E. Steyerberg (NL), K. Touijer (US), B.J. Trock (US), R. Valdagni (IT), H. Van Poppel (BE), L. Venderbos (NL), J. Walz (FR). See the European School of Oncology website for copies of the programmes and all conference speaker slides. If in difficulty please refer to Rita De Martini (prostate@eso.net). Blood tests to avoid needless prostate surgery Oliver Mood, Science Correspondent, The Times A simple blood test could spare thousands of prostate cancer patients from unnecessary and risky surgery. Prostate cancer is the most common cancer in British men, with more than 25.000 new cases of the disease and 10.000 deaths every year. More than four out of five malign prostate tumours are graded as “low risk”, but each year several thousand men with these cancers opt to have the gland cut out in an operation that carries a significant risk of infertility, impotence or incontinence. Fewer than one in ten of these procedures is thought to be necessary, but it is very difficult to work out which patients would die if they were not treated. Cancer researchers, led by the University of Copenhagen, have discovered a chemical that marks
  11. 11. EUROPA UOMO / Did You Know? N°1/2016 11 which low-grade prostate tumours are likely to carry a significant risk of death if the gland is not removed. The scientists looked at the proteins in 28 samples of cancerous prostate tissue and noticed that one of these complex strings, known as pro-neuropeptide Y (pro-NPY) appears at much higher levels in aggressive tumours. When they measured the protein in biopsies from750 Scandinavian men with “low-grade” prostate cancer, they found that those with high levels were more than twice as likely to die from the disease. Amilcar Flores Morales, professor of molecular disease biology at Copenhagen, said this suggested that proNPY was a “biomarker” that doctors could use to pick out the minority of patients who would benefit from the prostate surgery. Because pro-NPY also circulates in the bloodstream, Professor Flores Morales believes his team could use it to develop a simple blood test to gauge the patient’s situation. Self-esteem in prostate cancer: empty nest syndrome Tania Estapé We often speak about women suffering from an empty nest syndrome. This is a time of life when grown and independent children do not need them as much. This can lead to depressive tendencies. It is a moment of reflection which changes the meaning of life. This may impact on self-esteem as the most common feeling is "I am no longer useful," "I no longer good at anything", "nobody needs me." But we argue that there is an empty nest in every man and also the occurrence of prostate cancer may contribute to aggravate it. This is largely due to the average age at which prostate cancer occurs. Many men find a coincidence between this and a change in their life cycle. In psychology we consider more appropriate to speak of the life cycle at that age, because it is accompanied by certain events that characterize it, but it does not always agree with exact chronological ages. If we are talking about many men who are close to retirement or recently retired from work. For men traditionally work is a very important period for personal fulfilment. So much so that many identify themselves according to their professional activity, and later retired some still do (“I was an accountant of Company X", or "some other executive" ... ..). This is of importance from the psychological point of view because they are people whose personal identity was forged by that profession or job that defines them and they may sometimes fall into a deep depression, and suffer from a lack of motivation in their life. As happens in women, men also feel that their children are getting older and have even begun to become independent. All this provides a blow to their self-esteem and increases the feeling of "futility" and the realization that they are getting older. This process which may be more or less normal is aggravated when it coincides with the diagnosis and treatment of prostate cancer. When treatment affects erectile capacity and even urinary incontinence, we are dealing with items that affect the quality of life, but above all the feeling of masculinity is profoundly affected. It definitely is part of self-esteem. Other cancers have the same effect on physical and functional aspects but in this case the location of the tumour has an added impact on the crisis of the man. Self-esteem is a key element in the psychological health of the person and its definition says “it is how a person evaluates himself or herself with respect to their capabilities”. It is important to understand that self-esteem does not mean you think you are superior or better than others, but is a way of relating oneself to others and which makes you feel good about who you are and respect your own feelings and decisions. This self-esteem may be fragile in some moments of life and that is what we are considering. One has more or less self-esteem also in terms of the areas that we consider as important and from which we are self assessed. Therefore, in men with prostate cancer a series of events are added to the empty nest feelings. These are problems that make you feel "less of a man" (if you suffer from impotence and understand that your sexuality is finished, especially if your vision focuses on intercourse) and "less autonomous" (if you suffer from incontinence and feel less free in your daily lives). It is important to preserve self esteem but sometimes the facts of our life deeply damage it. Poor self- esteem is the prelude to depression, which we discussed in a previous article. A feature of depressive disorders is precisely the decline in self-
  12. 12. EUROPA UOMO / Did You Know? N°1/2016 12 esteem. The individual feels useless, a burden to others and little operative and interesting, and becomes less sure and has little trust in his own impressions. He has negative thoughts about himself, the world around him and the future and internal dialogue is related to this. He may feel a failure and lose the sense of his life because things that motivated him are now missing. It is therefore important to consider some points to try to preserve self esteem in men who are in this empty nest cycle and suffer from prostate cancer: - Try to have interests beyond work or working life: although this is not always easy, it is never too late. We must find hobbies, relationships or old forms of entertainment we used to do that can fill the void left by working life and that makes men feel self-realized and may even have satisfaction for the "job" well done (winning in competitions, doing well in some craft, achieve a DIY task, going on the trip that could not be done before due to a lack of time ....). - Have family support: it is true that children no longer need your advice so much but you may be able to recover some relationship. We must let them know that they are still important and that you are still there if needed, but it is important to try not to rely on that relationship, to break the dynamics of the empty nest. You may be valuable as an individual apart from others’ needs. - Enjoying life together: perhaps the time of retirement is a good time to do activities that you did not do before with your life mate. If we are suffering from the "empty nest" phenomenon this can be changed to something attractive, since once again the couple can enjoy themselves without the children in the middle. Sexuality can change but does not have to disappear altogether. It can be used to search for nearness and sensuality with more time to be relaxed together. We will talk further about this aspect in another article. - Incontinence can cause you to stop doing certain activities that were previously done and enjoyed. It is certainly an annoying effect that can undermine personal autonomy. You have to plan leisure activities and family activities based on this. it can be very important to exercise control if only to feel you are regaining control and this improves the self- esteem of the person. It may be important to help it by making records in a graph or chart. It is true that incontinence has a physical cause but there is a degree of anxiety that influences and sometimes just knowing that you cannot urinate for a while or not having certainty on where you can makes it still harder. Therefore make a kind of graph which will help you also see when was your last visit to the bathroom and is the urgency you feel really natural or does it respond to some anxiety. In addition, it may be important to know and accept that this is happening, not deny it and if possible, find information about how many possibilities there will be to go to the bathroom. - It is very important you don’t identify yourself with your problem. You are not incontinence or impotence. You are a person with incontinence and impotence therefore not to be identified with these problems. On the contrary try to preserve the most of your self-esteem. You are still X years old, and called Tom or James or whatever other name, and who likes reading, climbing mountains or travelling, married with children, with hobbies, personal tastes, feelings and emotions and that's how you should define yourself. Labelling yourself mentally and in capital letters: IMPOTENT, INCONTINENT ... PROSTATIC ... is something you must try to avoid. Otherwise this will lead you to define yourself as someone who is finished, worthless or ashamed. Whereas if the incontinence and impotence are obviously problems you are having, your identity can still be intact. The nest may be empty but not you.. As we always say there are psychooncology professionals who can help you individually, in pairs (couple therapy) or in groups in order to be able to recover a satisfying way of life on the basis of the problems that cancer and its treatment have caused in your life. Personal identity and self-esteem may be temporarily depleted but may be recovered, however you may still need to seek for help in order to see things differently. Members events in 2015 and proposals for 2016
  13. 13. EUROPA UOMO / Did You Know? N°1/2016 13 BELGIUM Wij Ook (US TOO) Belgium had 6 Board meetings, one general assembly and eight meetings of the journal PROSTAATinfo committee. We edited 4 trimestriel publications and organised four Café Santé meetings in Antwerp and two in Ghent. Co-organised with UZ Brussels our annual European Prostate Patient Day 19.09.2015 and our Walk against Cancer in Antwerp on 13.06.2015. Next to our open office and cancer patient library we are available for consultations on care problems and referrals to treating centres. Internationally we were involved in EPAD 2015, nurse training symposia and pharma events from Ipsen, Astellas and Janssen on prostate cancer education. We support OCA in return for compensation to Mrs. Anja Vancauwenbergh, acting secretary of Europa Uomo. ITALY Europa Uomo Italy co-sponsored 5 conferences in various cities during the course of the year, the most original one was the photographic competition in the Milian Stock Exchange building to sensitize the public on the need for an early diagnosis of prostate cancer. The election of a new chairman of the Scientific Committee, Dr Claudio Verusio, led to its more active participation to the benefit of Europa Uomo. The annual yearbook was published in June and put on our website. Some 145,000 articles have been downloaded since its inauguration in 2013. The regular meetings of the Milan Patients’ Group, co- ordinated by a psychologist, continued and now we are attempting to create other similar centres throughout Italy, also thanks to the recent creation of MultiDisciplinary Centres all over Italy. Thanks to Bayer Italy an article on Europa Uomo, its objectives and activities was included in their periodical “Sapere e Salute” which was distributed in 2,549 Italian chemists. The booklet on Prostate Cancer was updated and republished by the Istituto Nazionale dei Tumori of Milan and promptly put on our website www.europauomo.it. One of the principal initiatives proposed for 2016 is a tour of many Italian cities of a well equipped van in order to spread knowledge on prostate cancer and achieve a better national distribution of our membership which is most important due to the geographical shape of the nation. Lastly, Europa Uomo Italy continues to manage the issue of the quarterly international newsletter “Did You Know?” distributed throughout Europe through Internet. PORTUGAL Thanks to Bayer Portugal, articles where APDProstata (Portugal) is mentioned, its objectives and activities were included in important magazines and newspapers. We also participated in actions organized by Janssen (flash mob at Colombo Shopping Center, Lisbon); Sanofi (internal session dedicated to all employees); Bayer (public replica of old barber shop with direct reference to our Association); participation at the public launching of a new book – All you always wished to know about prostate – written by a well known local urologist. A great effort and time was also concentrated on the change to a new office, new by-laws and other related time consuming tasks (Finance State Depts., Social Security Authority and similar). For 2016, we will continue to concentrate on public sessions to keep our target alive, presence on TV, Press and Radio, and re-launch our website and Facebook presence. SLOVAK REPUBLIC Europa UOMO Slovakia (EUS) was founded in 2006 as a civil association of patients with CAP and top Slovak urologists from the Slovak Association of Urologist (SAU) including Prof. Kliment, Dr. & Assoc. Prof. Goncalves, Prof. Breza, Prof. Valansky, Prof. Hornak and others. The EUS organization has three centers in the main regions in Slovakia: Bratislava - Prof. Koprda, Martin - Prof. Kliment and Košice - Prof. Blazek. Gradually we created some local patient groups. A very well centrally patient association League Against Cancer, LAC co-operates closely with EUS (legal, social and psychological counselling, plus club activities). But LAC has predominantly a female membership. Patient organizations (especially so in a sensitive area such as CAP) do not have a tradition of Slovakian men. The situation is improving slowly, especially following promotional activities by our members. Slovakian patients and all candidates therefore have the opportunity to see the excellent websites in their native language. For example, at www.rakovinaprostaty.sk/pacienti/sekcia-sk-28- Poradna-30-Odpovede (this is the prostate cancer – patients‘ website). There is an excellent clinic led by Professor Kliment - head of the second center E- UOMO Slovakia.
  14. 14. EUROPA UOMO / Did You Know? N°1/2016 14 Other quality websites are for example www.zdravaprostata.sk, www.mojaprostata.sk, www.pluska.sk/izdravie/wiki/prostata.html. Our website E-UOMO Slovakia is: www.europaumo.sk. Finally, the website of the central Slovak Organisation League Against Cancer: www.lpr.sk. 2015: The patients in our centers and clubs meet once or twice a year. They exchange experiences with one another, a reputable urologist is always available, and they are informed of the European activities of E-UOMO as a whole. It is presented in the Slovakian magazine DYK. Patients also receive copies of the Polish magazine Gladiator. Each new member receives a book about the CAP, diagnosis and treatment methods. This book was produced by Prof. Kliment with a significant support of our EUS. The EUS GA took place in Martin town. It was attended by patients and doctors of all Slovak EUS centers which regularly attend and inform us on the activities of their organizations. Representatives from Austria (Ekke Buchler) and from Poland (from Gladiator –Tadeus Wlodarczik) also attend. We have a permanent help-service for our members by means of a telephone link in Bratislava (run by our member Prof. Hornak, which covers all Slovakia, via LAC -free of charge), a website with Q and A managed by Prof. Kliment - in Martin and an email in Kosice ( run by Prof. Blazek, Prof. Valansky). All for the whole of Slovakia. We organize and pay for three members every year for a one week cure in Slovak Spa for better social and health conditions. In 2015 it was held in Nimnica Spa. In September, the EUS connects to the AUS for the urological week. In the present term of the Secretariat EUOMO Brussels, we publicized EPAD in Slovakia by sending letters to editors of media, our booklets and the like. At the beginning of 2016, each EUS member received a letter from the chairman, Prof. Koprda, with a report on all activities for the year 2015. In 2016: The EUS GA will be held in Bratislava on 03/18/2016. It will be a solemn meeting with a number of honourable guests of LAC, SAU as well as EUOMO guests from Austria and Poland. Our standard activities will be held in our EUS centers. We will continue to work to inform the public (our website, emails, phone and booklets). We update them on your web-site, give them translations of the content and of the editorial of DYK. We will make every effort to activate the membership base and to acquire new members from among Slovakian patients. SPAIN Europa Uomo Spain is working hard on prostate cancer. Our support groups are going on with the presence of an Oncologist and a Psycho-oncologist. We have renewed our web site (main and specific webs, being one of them prostate cancer web: www.cancerdeprostata.org). It includes a psychological assessment and a sexuality area. We have distributed our Prostate Cancer code to public and health care centres and our Prostate cancer booklet (translated from the American Cancer Society). We have a program on medical and psychological advice. We offer individual and couple therapy and also we have a helpline to help individuals and their relatives by phone. We collaborate in the Did You Know newsletter with the psycho-oncology corner article. We have participated in Bayer meeting and assessment on their work on pain results. We have presented a poster in the Washington International Congress of Psycho-oncology (August 2015) on our results about 278 men with prostate cancer (anxiety, depression and problems related with illness). For 2016 our goals in prostate cancer are to go on our group and try to wide it to other cities under our assessment. Also we are participating in assessing Bayer in writing a leaflet to distribute among patients to help them to improve their communication with doctors. Also we have been invited to some public education activities on prostate cancer (our lecture is on medical and psychosocial aspects of prostate cancer). Our help line by phone will be included in a global line of the Psychologists Association of Barcelona that offers helpline for other health problems. We will go on our current activities. UNITED KINGDOM Tackle Prostate Cancer had a successful year in 2015, seeing the culmination of a 3-year plan to establish the charity as the voice of prostate cancer in the UK, led by our chief executive, Rowena Bartlett. “Tackle”, as the public brand of what is the National Federation of Prostate Cancer Support Groups, has been active on all three fronts of its strategy, namely encouraging and assisting in the formation of patient led support
  15. 15. EUROPA UOMO / Did You Know? N°1/2016 15 groups, raising awareness of prostate cancer in the general population and encouraging the improvement of health services by campaigning. By the end of the year we had some 80 support groups within the organization, now organized within a regional structure with the sharing of best practice, helping other groups to get established and offering counselling and advice to those newly diagnosed. We have improved our governance and have become fully incorporated as a charitable company. On the awareness front, we have established a new national helpline, redesigned our website at www.tackleprostate.org and prepared awareness packs for groups. We encouraged wider PSA testing through various initiatives in the fishing and rugby communities which are bearing fruit with our campaign to encourage men to know their PSA or to “get a score on the board”. Perhaps the area of greatest impact has been the active campaigning we were involved in. 2015 saw numerous media appearances on TV and radio, articles and mentions in national newspapers. We are now regularly asked by governmental agencies for our view on emerging guidance, the development of standards and the availability of drugs, particularly for advanced prostate cancer. This last point is one we continue to try and influence, and will do so in 2016 as a new model for making sure emerging drugs become available to patients. Our efforts will also continue on growing our organization to cover those areas of the UK not served by a support group. We will continue to raise awareness of the importance of early detection and campaign for improved treatments, with a special focus on bone health. We expect to play our role in helping Europa Uomo achieve its aims in the wider arena. Initial Report of the activities carried out by the new Liaison Officers (LOCs) between November 2015 and March 2016 Erik Briers [PI – personal invitation] Celebration Emeritus Prof. H. Van Poppel (Leuven, 21.11.15) Participation at the conference in honour of Prof. H. Van Poppel (Leuven 20-21 November 2015) EAU Guidelines Committee meeting 18-19 December 2015 [PI] BBMRI-ERIC Belgian node [BioBank European collaboration] on future collaboration [PI] (23 December 2015) ESR-PAG [European Society of Radiology – Patient Advisory Group] on future activities [PI] (14 January 2016) Prostate Cancer meeting Brussels participation with André Deschamps Brussels (26 January 2016) JACD [Berlin] [Janssen Pharmaceutical Companies] Meeting in Berlin invited to be part of a panel to speak on patient cancer journeys [PI] (27 January 2016) REQUITE [ethics committee] [Validating Predictive Models and Biomarkers of Radiotherapy Toxicity to reduce side-effects and Improve Quality of Life in Cancer Survivora] TelCon on communication and dissemination [PI] (1 February 2016) EMA [European Medicines Agency] Conference on EudraVigilance and a new project for patient reported side effects (19 February 2016) Bayer [Berlin] Invitation to speak to research managers in pre-clinical research on my cancer journey and patient involvement in new medicines development [PI] (1 March 2016) IEEPO 2016 Copenhagen (International Experience Exchange for Patient Organisations) invited to speak on patient involvement in the regulatory process [PI] (2 March 2016) European Conference on Radiology Vienna 2016 [PI] 3 March Invited speaker on : Radiation risk: a patient’s perspective 4 March invited speaker on: Patient’s expectations in communication with radiologists 5 March invited speaker: ESR-PAG session on Patient- centred care on: view of a patient with prostate cancer 5 March invited speaker: ESR-PAG session on Data- sharing for better patient outcomes on: view of a patient with prostate cancer 6 March meeting of the ESR Patient Advisory Group EAU Guidelines Committee TelCon 10 March 2016 [PI] Louis Denis Celebration Emeritus Prof. H. Van Poppel (Leuven, 21.11.15) Representation Extra Ordinary General Assembly ECPC (Brussels, 27.11.2015) XtandiTM Launch Symposium on new treatments (Antwerp, 03.12.15) Terminate NCI contract Liaison Office Brussels (20.01.2016) Urobel 10 year Nursing (Leuven, 06.02.2016) Guiding Amgen grant 2016 (10.02.2016)
  16. 16. EUROPA UOMO / Did You Know? N°1/2016 16 Precise role of MRI (Milan, 11.02.2016) Honorary Chair 3rd ESO Conference on Active Surveillance (Milan, 12.02.2016) Preparing Europa Uomo working schedule EAU Munich (11.03.2016 Maria Luisa & Joaquim Domingos Prepare and dispatch to Vienna the booth materials. Ekkehard Büchler organized the booth and represented Europa Uomo at The European Cancer Congress 2015 - Vienna, 25-29 Sep 2015 Prepare and dispatch to Milan the booth materials (roll-ups). Malcolm Duncan organized the space available and represented Europa Uomo at the 3rd Conference on Active Surveillance for Low Risk Prostate Cancer (12-13 February 2016 – Milan We will now prepare the Europa Uomo booth for the EAU Munich EAU congress, March 10-15, 2016 Brigitte Dourcy-Belle-Rose Secretariat US TOO Belgium Celebration/organisation Prof. Van Poppel Urobel 10 year Nursing (Leuven, 06.02.2016) Column in Prostate Info editions December & March Substitute Secretariat Europa Uomo Paul Enders As a member of the advisory board of the PREFERE- study I was involved in measures to improve the recruitment of patients. PREFERE is an important study in Germany where four options of treatment for low risk prostate cancer are being compared. Will Jansen Organising contributor members of the PKS, which was held in November 2015 in de Reehorst in Ede, NL. Which was visited by 550 people. It is a yearly one day event with presentations by the best Dutch physicians. As from November 2015 my team of 76 volunteers did organize, in cooperation with the concerning hospitals, 62 prostate cancer information meetings. These meetings are approximately attended by 80 - 150 persons. These meetings are a source of extended donors. Produced our PKS video in a shorter version, the main video is 11 minutes. The shorter version is approx. 5 minutes. Both can be seen on You Tube. I am now engaged in having both videos in the English language. As from December we formed with Bayer a cooperation to organize meetings in hospitals using Radium 223. All the costs involved are accounted for by Bayer. These meetings, 12 in total through the whole country, will start at the end of this month. And of course last but not least the organisation of the UOMO General Assembly, together with our PKS contributor members on the SS Rotterdam in Rotterdam as from June 16 until June 19. Roger Wotton Made a submission to the UK National Screening Committee on improvements to testing protocols and improvements in early diagnosis Had an article published in “Trends in Urology & Men’s Health” on quality standards for prostate cancer Gained agreement from UK support groups to change the constitutional nature and governance of Tackle to become a Charitable Company Limited by Guarantee on 1.1.2016 Worked with other UK cancer charities and submitted recommendations for a new Cancer Drugs Fund for innovative drug treatments Produced two videos for patients – one with a focus on rugby and one as a good example of a support group. As an aside, I would like to show these two videos to our group when we meet in Munich, if that can be arranged. “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: Poul Tolstrup Christensen, ptc@propa.dk; Finland: Hannu Tavio, hannu.tavio@gmail.com; France: Roland Muntz, info@anamacap.fr; Germany: Günter Feick, g-feick@gmx.de; Hungary: Dr. Tamás Simon MD. Ph.D., simon@rakliga.hu; Ireland: John Dowling, euomosecjd@gmail.com; Italy: Malcolm Galloway Duncan, mqi@hotmail.co.uk - europauomo.italy@virgilio.it; Lithuania: Zygimantas Kardelis, karzygis@gmail.com; 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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