EUROPA UOMO NEWS ARCHIVE - 2006/2013


2013

 European Prostate Cancer Awareness Day 2013

 Every Month Matters: the patient journey

 Stop Cancer Now!

 Prostate Cancer Research Symposium


2012

 EPAD - European Prostate Awareness Day 2012

 Prostate Cancer Risk Calculator offers men ‘individual risk assessment’

 YourTreatmentChoices.com

 Website reaches parts of men that GPs cannot

 1st Prostate Cancer Advocacy Training Course

 Active Surveillance for Low Risk Prostate CAncer


2011

 Europa Uomo General Assembly

 26th EAU Annual Congress - 2011

 Prostate Cancer units: Purpose and Requirements

 News from the EMA the “European Medicines Agency”

 British journalists win joint first prize for excellence in cancer journalism

 Prostate cancer: patients’ voice

 EU Clinical Trials Register goes live
Public online register gives access to information on clinical trials

 Exercise May Lower Risk of Death for Men With Prostate Cancer

 Press-release - Success for ECPC at the European Parliament puts cancer research firmly on the agenda

 Patient organisations need to be included in the development of cancer treatment


2010

From Fear to Hope - MASTERCLASS

Patient Guidebook For The Diagnosis and Treatment of Advanced Prostate Cancer

"Forum Against Cancer Europe" (FACE) launched in the European Parliament, supported by more than 50 MEPs

Bone Health and Cancer: e-learning module

Urology Week 2010

Europa Uomo Member's Annual Report 2009

Call for Nominations


2009

Affiliate Partnership between EAU and Europa Uomo - 2009

Talking the same language - 2009

National Prostate Cancer Awareness Month in the United States - 2009

Proactive Prostates Initiative Call to Action to prevent deaths from prostate cancer in Europe - 2009

Launch of the European Partnership for Action Against Cancer - 2009

Urology Week - September 2009

24th Annual EAU Congress (Stockholm - Sweden) - March 2009

Prostate Cancer Week in Cyprus - Feb. 2009

Support Group's Training Course - Feb. 2009


2008

Urology Week - September 2008

Inaugural Conference PCa Support Federation - April 2008


2007

Local Activities Europe - 2007

Novartis Grant

European Passport


2006

World Congress of Psycho-Oncology Steering Committee, 4 November 2006 – Antwerpen – BELGIUM

 


European Prostate Cancer Awareness Day 2013

IMPROVING PROSTATE CANCER CARE ACROSS EUROPE

A CALL TO ACTION

Recommendations to reduce the death rate and burden of prostate cancer by improving early detection and equal access to high quality care across Europe

 

To Cure
Prostate Cancer
- Early detection
and stratification -

Per-Anders Abrahamsson's presentation
in EPAD,
Brussels, 2013

 

  

The importance of more quality time in advanced prostate cancer care

This film has been developed as part of the Every Month Matters initiative to illustrate the experience of living with advanced prostate cancer. By providing insight into both the physical and emotional impact of prostate cancer, the aim of this film is to emphasise, and raise awareness of, the importance of care for men with advanced prostate cancer.

 


Every Month Matters: the patient journey

The importance of more quality time in advanced prostate cancer care

This film has been developed as part of the Every Month Matters initiative to illustrate the experience of living with advanced prostate cancer. By providing insight into both the physical and emotional impact of prostate cancer, the aim of this film is to emphasise, and raise awareness of, the importance of care for men with advanced prostate cancer.

 

 


Stop Cancer Now!

On 26–27 October 2012 the World Oncology Forum (WOF) gathered in Lugano, Switzerland, with the task of evaluating progress to date in the war against cancer. The Forum was convened by the European School of Oncology, in partnership with The Lancet. It was attended by internationally renowned epidemiologists, clinicians, researchers, advocates, policy makers and representatives from industry.

The participants concluded that current strategies for controlling cancer are clearly not working: preventable cancers are not being prevented; patients are suffering and dying unnecessarily from cancers that are detectable and treatable; and the model for developing effective new curative therapies is not fit for purpose and needs a radical rethink.

In its final session, participants agreed on a set of actions that have been shown to work, are achievable everywhere in the world, and are essential if we are to stop the current escalation in the number of men, women and children suffering and dying unnecessarily of cancer.

This 10-point action plan will be published on World Cancer Day, February 4th 2013, in an appeal to governments and policy makers to recognise the catastrophic scale of the human and economic suffering caused by cancer, and to do something about it.

The appeal, appears on February the 4th, under the title Stop Cancer Now!, in advertisements in the International Herald Tribune, Le Monde, La Repubblica, El País, and Neue Zürcher Zeitung. On the same date the Appeal will be published in The Lancet, along with a commentary and as the subject of a feature piece in Cancer World magazine. Events are planned in a number of countries to bring the Appeal to the attention of political leaders.

Advertisement

Press Release

Stop Cancer Now!
Top cancer experts call for urgent global action to save millions of lives


Prostate Cancer Research Symposium

German Cancer Aid has decided to implement an international symposium focussing on prostate cancer research. With this meeting, German Cancer Aid would like to provide an impetus to current aspects of translational prostate cancer research as well as to support multidisciplinary co-operations in the field, in order to strengthen prostate cancer research in Germany.

The major aims of the meeting are:
1. Survey of recent prostate cancer research in Germany
2. Identification of areas requiring further research
3. Discussion about possibilities of coordinated prostate cancer research

Recent results and developments of prostate cancer research will be presented by national and international experts in the field. German Cancer Aid attaches special importance to the participation of young scientists in this meeting. The Organisation gratefully acknowledges the time and effort every participant dedicates to this meeting and is looking forward to a high-level series of lectures and discussions.


EPAD - European Prostate Awareness Day 2012

September 19, 2012 - Brussels

See here the video, presentations and photos of the European Prostate Awareness Day 2012


Prostate Cancer Risk Calculator offers men ‘individual risk assessment’

Clinicians can use in clinical practice to avoid unnecessary biopsy and help decide treatment

Men worried about prostate cancer have a new online resource, freely available, to help them assess their risk. The multi-step Prostate Cancer Risk Calculator, www.prostatecancer-riskcalculator.com* (launched today, 17 May 2012), has been created by the founders of the European Randomized Study of Screening for Prostate Cancer (ERSPC).

It is easy and simple for people to use. Men can use the first two calculators to assess their individual risk of developing prostate cancer without needing any medical expertise. The first starts with family history and general health information. The second is for use if you also have the results of a simple blood test to assess the level of prostate specific antigen (PSA). The online resource provides a range of helpful information about the disease.


YourTreatmentChoices.com

YourTreatmentChoices.com is a new clinical trials service for patients where they can search for, watch and ask about clinical trials taking place locally or nationally.

The service enables patients who want suitable clinical trial options to directly contact clinical researchers responsible for them via a private messaging system.

Managed and operated by Tomorrows Medicines, a healthcare education company based in UK, the service is free for patients and independent of any pharmaceutical company or contract research organisation that runs trials on behalf of trial sponsors.

Since the site was made available, thousands of patients from 25 different countries have searched for clinical trials for more than 250 conditions and are making contact with clinical teams. Globally, the site provides access to more than 40,000 actively recruiting trials in more than 190 countries.

In a survey of 80 cancer patients, 83% said they would use the site to find and learn about local and regional clinical trials. 80% would use the private messaging system to make contact with the clinical trial team and 77% say they are likely to consider participating in a clinical trial using the services provided by YourTreatmentChoices.com.

Investigators can also use the service by adding screening questions and educational material including video to their trial information page.

Ultimately though the benefit of YourTreatmentChoices.com is that it gives more power to patients themselves.

For more information please contact Dr Clare Nolan T: +44 (0)1925 607125 E: dr.cj.nolan@tomorrowsmedicines.com


Website reaches parts of men that GPs cannot

Innovative prostate research project now available in 3 languages
European Men’s Health Forum 11 June 2012

Many men have concerns about their prostate. But less than half of them feel comfortable talking about them to their GPs. That's the key message from a survey by the European Men’s Health Forum (EMHF) of users of their website www.yourprostate.eu

The EMHF’s analysis of questions asked by men in the UK about their prostate health showed that despite being concerned about symptoms fewer than 50% of men had approached a GP before coming on-line to ask their question of a specialist urologist nurse.

The questions men most ask about their prostate health concern changed urination patterns and sexual health. Their concerns included increased frequency, a feeling of imcompleteness, needing to get up several times in the night to wee and getting and maintaining erections.

The ‘Your Prostate’ website (www.yourprostate.eu) is an email surgery offering specialist urologist nurses to answer questions and encourage men to seek further medical help on all aspects of prostate health from the most general of concerns though symptoms, diagnosis, support and treatment to follow-up care.

The Forum is releasing its preliminary findings to coincide with International Men’s Health Week and, building on the success of the English-language service, is also announcing the launch of this pioneering service in German and Spanish too.

EMHF president Dr ian banks said: ‘This isprobably the first prostate health research project to ask men what they want to know rather than telling them what they need. The finding that most men have not previously discussed their concerns with a GP prove that it is long overdue.’

As well as a service to men, yourprostate.eu is a research project designed to see if men in Munich or Madrid, Manchester or Marbella think the same way and have similar experiences to men in Berlin or Belfast, Barcelona or Bonn when it comes to the prostate? This insight will be used to design new health materials.

Two papers based on the earlier research have already appeared in the Journal of Men’s Health.

Dr Ian Banks, the president of the EMHF, called on health professionals and organisations across the EU to get behind the project. ‘We must all encourage men to use this site,’ he urges. ‘We have valuable data from the first phase of the project and making the service available in other languages will help us to report on similarities and differences across cultural backgrounds.’

So please help us to help men by publicising this initiative as widely as possible.

Advertising banners, text for websites, and PDF flyers are available.


1st PROSTATE CANCER ADVOCACY TRAINING COURSE

1-3 June 2012 in Jongny s/Vevey - Switzerland

Patient advocacy is a vital aspect in undertaking optimal delivery of healthcare to patients. Even if being a patient enables to experience intimately the illness and the upset induced by diagnosis and treatments, not everyone starts out by being a good patients ‘advocate.

Therefore the European Prostate Coalition has launched the 1st Prostate Cancer Advocacy Training Course in order to provide to all patients’ advocate the basic knowledge about the access to the best evidence based information about prostate cancer as well as communication and social networking skills.


ACTIVE SURVEILLANCE FOR LOW RISK PROSTATE CANCER

12-13 January 2012 - Rotterdam, The Netherlands

Over the last 5 years there has been increasing acceptance of Active Surveillance for prostate cancer as alternative to invasive treatment for men with low risk prostate cancer. Unless the overdiagnosis of indolent disease is reduced by alternative diagnostic strategies for early prostate cancer, active surveillance will continue to play an important role. In selecting men for active surveillance programs, a balance is sought between minimizing the risk of tumor progression and maximizing the number of men that will remain asymptomatic and untreated for the rest of their lives. The challenge is to determine how new imaging methods, and biomarkers, can improve patient selection, and how drug intervention may improve outcome. Programme and Registration form here.

 


Europa Uomo General Assembly

Antwerp, October 13, 2011

According to the Article 6) of Europa Uomo Statutes, the General Assembly for the year 2011 will take place at Antwerp, on October 13, 2011.

 


26th EAU ANNUAL CONGRESS - 2011

Prof. Michael Marberger, congress president and member the EAU Board and Ekkehard Büchler, representing Europa Uomo, discussed the role of urologists and national urological societies in the developing efficient patient-oriented information channels.

Europa Uomo organized a joint symposium for patients during the congress on Tuesday, 22 March at 13.00-17.00. Some of the world’s leading experts participated
in the event – Profs. P-A. Abrahamsson, G. Kramer, F. Schröder and others. Among the topics discussed during the symposium were ther quality of life for the ageing man, PCa prevention, curative therapy, medical therapy and prostate cancer screening.

Slides used by speakers have been made available for publication at Medical News and Reports.

 


Prostate Cancer units: Purpose and Requirements

24 September 2011 - Stokholm, Sweden

The European School of Oncology is pleased to announce the 1st symposium edition "Prostate Cancer Units: Purpose and Requirements", which will be held during the European Multidisciplinary Cancer Congress on September 23-27 in Stockholm, chaired by Dr. Louis Denis and Dr. Alberto Costa.

 

 


News from the EMA the “European Medicines Agency”

As you all now by now, the European Medicines Agency is our own European clearing house for all important and innovating new medicines. The EMA receives from pharmaceutical companies all pertinent information on their new products with all reports on the clinical trials. This information is reviewed by a EMA scientific committee. Objective is to evaluate if the new product can be authorized for the European market. If this is the case, then the EMA prepares an EPAR or European public assessment report.

For each new product the EPAR which is a summary explains how the Committee for Medicinal products for Human Use (CHMP) assessed the medicine to reach its opinion in favour of granting a marketing authorisation and its recommendations on the conditions of its use.

These EPAR’s are all published on the internet on the site of the EMA. You can thus consult a lot of important information in different languages on this site.

The EMA site can be reached through the following address:

http://www.ema.europa.eu/ema/index.jsp?curl=pages/home/Home_Page.jsp&murl=&mid=

On the very first page you can “search for medicines”, if you enter “cabazitaxel” or “Jevtana” to will enter into a page for “Jevtana – cabazitaxel”, Jevtana is the commercial name for this new therapeutic agent for the treatment of advanced stage metastasised prostate cancer.

This is the EPAR page and you can see a lot of entries, you can also download the document in its PDF form in 23 European languages.

From this page a lot information can be retrieved so if you have any questions on medicinal products with European marketing authorisation go to the EMA website and enter the name of the product.

If you do not know the specific name of the product, you may enter a descriptive term such as “prostate cancer” in the general search box at the top righthand side of the opening page and press “GO” now you see all information related to “prostate cancer”, not necessarily on medicinal products.

Clinical trials

But, not all medicinal products that you read and hear about are already allowed onto the market. These are perhaps being tested in “clinical trials”. The European Medicines Agency has by now created a subsection in their website where you can find information on almost all clinical trials.

On the opening page of the EMA you can click on a connexion button “EU Clinical Trials Register” that will lead you to new opening page with a button to search for a given clinical trial. On this site you may find information on 14.780 current clinical trials.

But, you will not find clinical trial in Phase I, first in human subjects trials because the number of patients that can participate is very small.

If you would search for “abiraterone” the return message will be very fast and you will notice that there are 10 clinical trials with this compound in Europe.

For drugs that are already on the market there can be clinical trials present that are testing new applications or circumstances.

For every clinical trial you find the countries that participate in the trial and if the trial is completed or ongoing.

This website is currently still under construction, information on every clinical trial is added and some links are not yet active.

 


British journalists win joint first prize for excellence in cancer journalism

14 June 2011 – British journalists Mark Henderson and Victoria Lambert are
the joint winners of the European School of Oncology’s (ESO) Best Cancer Reporter Award for 2011. The Award was established by ESO in 2006 to encourage high-quality media coverage of cancer and to recognise outstanding cancer journalism. Since then the prize has been awarded to journalists from several European countries to acknowledge the excellence of their work and commitment to enlightening people about cancer. Henderson and Lambert will each receive a prize of €7,500 and an example of their work will be reprinted in ESO’s magazine Cancer World (www.cancerworld.org).

Mark Henderson, Science Editor at the UK newspaper The Times, said: “I’m delighted and honoured to be recognised with this prestigious award. It also recognises the brilliant scientists whose research I reported, such as Mike Stratton, Lecia Sequist and Daniel Haber, and the patients who make their discoveries possible. I’d like to thank the jury for choosing me, Professor Stratton for nominating me, and especially the Weaver family for their brave, enthusiastic and illuminating co-operation with my work.”

Victoria Lambert, a freelance health reporter who writes articles for some of Britain’s leading newspapers, commented: “Thank you so much for honouring me with the Best Cancer Reporter Award 2011 jointly with Mark Henderson. I am delighted to receive the award as it recognises the role responsible journalism can play in informing the public about cancer. At its best, good writing can – hopefully – do more: building bridges between scientists, doctors, patients and carers (not to mention nations), demystifying technical jargon, bringing comfort, and sometimes hope, too. I know the ESO works well with the media, and I believe this award can only promote higher standards across Europe.”

A runner-up prize was awarded to Martina Keller, a German freelance journalist. She commented: "I would like to thank the cancer patients I interviewed for my article. It is not easy to reflect about costs and benefits of cancer drugs if you hope those drugs will prolong your life. But they did." Keller will receive a prize of €2500.

The work of Silja Paavle who writes for Öhtuleht, one of Estonia’s highest circulation daily newspapers, was highly commended by the judges. She will receive a Special Merit Award certificate that recognises the excellence of her reporting on cancer.

For further information please contact: Corinne Hall at the European School of Oncology Tel: +39 02 85 46 45 22
Email: mediaservice@eso.net

 


Prostate cancer: patients’ voice

Lugano, 13th May 2011

Presentation by Vincent Griesser - MD,
in the Educacional Cancer Convention Lugano
- What's New and What's True in Genito-Urinary Oncology?

 

 


EU Clinical Trials Register goes live

Public online register gives access to information on clinical trials

The EU Clinical Trials Register (www.clinicaltrialsregister.eu) was launched today by the European Medicines Agency. The online register gives for the first time public access to information on interventional clinical trials for medicines authorised in the 27 EU Member States and Iceland, Liechtenstein and Norway. The database also allows the public to search for information on clinical trials authorised to be carried out outside the EU if these trials are part of a paediatric investigation plan.

The information contained in the EU Clinical Trials Register is extracted from EudraCT, the EU clinical trials database. It is provided by the sponsor of the clinical trial, and is a component of its application to a national medicines regulatory authority for authorisation to conduct a trial. The information from the sponsor is loaded into the EudraCT database by the national medicines regulatory authority. The authority adds to this information the authorisation of the clinical trial and the opinion from the relevant ethics committee. Information on third country trials that are listed in a Paediatric Investigation Plan (PIP) is provided by the PIP addressee directly, via the EMA, to the system.

Throughout the project the Agency worked together with stakeholders, including patients and healthcare professionals, to ensure that their needs were taken into account, to the extent possible at this stage, when designing the register.
Lise Murphy, co-chair of the Agency’s Working Party with Patients’ and Consumers’ Organisations said: ’we welcome the launch of the EU Clinical Trials Register. It increases transparency of medical research and will make it much easier for patients to find information about clinical trials taking place in Europe. We are committed to continue working with the EMA to further develop the system so that it becomes a valuable and useful resource for patients across the EU.’

The Agency will continue to work with stakeholders to improve the functioning of the EU Clinical Trials Register, in particular by enhancing the quality and completeness of data, and improving the search functionality. Plans for the future also include the publication of summaries of clinical trial results, on which draft guidance has already been published for consultation by the European Commission. Publication of trial results summaries will require a major upgrade to the existing system, the start of which will depend on finalisation of the guideline and availability of budget and resources.

Notes
1. The EU clinical trials register can be found here: www.clinicaltrialsregister.eu
2. The clinical trials register is part of the EudraPharm, the Community database of authorised medicinal products. More information on EudraPharm is available here: http://eudrapharm.eu/eudrapharm
3. The data in the EU clinical trials register are extracted from EudraCT, the EU clinical trials database. More information on EudraCT is available here: https://eudract.ema.europa.eu/
4. The approval of clinical trials applications in the European Union is the responsibility of the member states. More information on clinical trials in the EU is available here: http://ec.europa.eu/health/human-use/clinical-trials/index_en.htm
5. More information on the work of the European Medicines Agency can be found on its website: www.ema.europa.eu
Contact our press officers:
Monika Benstetter or Sabine Haubenreisser - Tel. +44 (0)20 7418 8427- E-mail: press@ema.europa.eu 

 


Exercise May Lower Risk of Death for Men With Prostate Cancer

A new study of men with prostate cancer finds that physical activity is associated with a lower risk of overall mortality and of death due to prostate cancer. The Harvard School of Public Health and University of California, San Francisco researchers also found that men who did more vigorous activity had the lowest risk of dying from the disease. It is the first study in men with prostate cancer to evaluate physical activity after diagnosis in relation to prostate cancer-specific mortality and overall mortality.

The study appears in an advance online edition of the Journal of Clinical Oncology.

“Our results suggest that men can reduce their risk of prostate cancer progression after a diagnosis of prostate cancer by adding physical activity to their daily routine,” said Stacey Kenfield, lead author of the study and a Harvard School of Public Health researcher. “This is good news for men living with prostate cancer who wonder what lifestyle practices to follow to improve cancer survival.”

Prostate cancer is the most frequently diagnosed form of cancer among men in the United States and affects one in six U.S. men during their lifetime. More than 2 million men in the U.S. and 16 million men worldwide are prostate cancer survivors.

The study was conducted in 2,705 men diagnosed with prostate cancer in the Health Professionals Follow-Up Study over an 18-year period. The participants reported the average time per week they spent doing physical activity, including walking, running, bicycling, swimming and other sports and outdoor work.

The results showed that both non-vigorous and vigorous activity were beneficial for overall survival. Compared with men who walked less than 90 minutes per week at an easy pace, those who walked 90 or more minutes per week at a normal to very brisk pace had a 46% lower risk of dying from any cause.

Only vigorous activity—defined as more than three hours per week—was associated with reduced prostate cancer mortality. Men who did vigorous activity had a 61% lower risk of prostate cancer-specific death compared with men who did less than one hour per week of vigorous activity.

“We observed benefits at very attainable levels of activity and our results suggest that men with prostate cancer should do some physical activity for their overall health, even if it is a small amount, such as 15 minutes of activity per day of walking, jogging, biking or gardening,” said Kenfield. “However, doing vigorous activity for three or more hours per week may be especially beneficial for prostate cancer, as well as overall health,” she said.

This study was funded by the National Institutes of Health, Charles A. King Trust and the Prostate Cancer Foundation.

“Physical Activity and Survival After Prostate Cancer Diagnosis in the Health Professionals Follow-Up Study,” Stacey A. Kenfield, Meir J. Stampfer, Edward Giovannucci, June M. Chan, Journal of Clinical Oncology, online January 4, 2011.

 


press-release - Success for ECPC at the European Parliament puts cancer research firmly on the agenda

Today, ECPC collected signatures from a majority of MEPs in support of Written Declaration 80 on cancer research. Drafted by FACE Champions, it calls for more collaboration in the field of cancer research, and more translational research led by the needs of patients. The declaration has now been forwarded to the President of the European Parliament, and announced in the plenary session.

The Written Declaration was initially submitted in October 2010, and has been actively promoted by the ECPC team and FACE Champions during parliamentary sessions in Brussels and Strasbourg. Our success is also in part due to the efforts of our member organisations, who called on their local MEPs to support this initiative.

This marks a significant achievement on the part of ECPC, FACE Champions and other supporters, the culmination of months of effort. As our presence in the European Parliament increases, we continue to establish and develop relationships with policyand decision-makers at the European level whilst promoting cancer issues the EU is well-placed to address. This is a significant achievement as very few Written Declarations are passed.

Putting cancer research on the agenda of parliamentarians is crucial for building support and momentum for improvements in this field. While a number of European initiatives such as EUROCANPlatform, in which ECPC is involved, are developing networks and models for more collaborative and coherent research across Europe, more can be done.

ECPC, working in conjunction with FACE Champions and stakeholders across the European institutions, will strive to ensure that no potential avenue is left unexplored, and that cancer research in the EU addresses the range of needs of cancer patients with all possible variants of the disease in a way that focuses on translation into therapies, and in a way that minimises waste of resources such as money, expertise and time - all of which are immensely valuable in the cancer community.

Please find the text of the Written Declaration attached. ECPC will be developing a campaign to prompt tangible outcomes from the success of this written declaration in the context of European policy devevlopment.

For more information please contact:

Denis Horgan - ECPC Head of External Affairs - E-mail: denis.horgan@ecpc-online.org

Nicola Colson - ECPC Communication Assistant - E-mail: info@ecpc-online.org

 


Patient organisations need to be included in the development of cancer treatment

"A partnership programme is needed to achieve the best results in cancer treatment and to organise effective research."

Paula Risikko, Finland's Health and Social Services Minister, appointed a committee in 2009 to map the current status and discuss the future of cancer treatment in Finland. The committee submitted its report in early 2010. The committee had no representation whatsoever from cancer patient organisations.

Simultaneously, in September 2009, the EU launched the European Partnership for Action Against Cancer, the largest anti-cancer programme ever, led by the President of the European Commission. Cancer patient organisations operating at the European level were also invited to contribute to this anti-cancer initiative in a spirit of true partnership.

This programme naturally cannot infringe upon the sovereignty of the Member States as regards health care and cancer treatment. Nevertheless, the objective is for all Member States to have national cancer plans by 2013. In this spirit, Finnish patient organisations were also given full membership status in the Finnish Parliament’s cancer network.

This autumn, the work of the national cancer strategy committee will be reviewed by the National Institute for Health and Welfare, mainly from the perspective of organising practical action. As was the case with the previous strategy committee, however, Finnish cancer-patient organisations have not been invited to contribute to this cancer planning work.

There is reason to fear that this project will not truly take into account the patient’s life and experiences, and patients will be reduced to travellers of the path of treatment, whose lives can be summed up in psychological theories. There is no doubt that any plan resulting from such a process would be incomplete.

Are we getting a bureaucratic cancer treatment system, where functionality is only assessed in terms of the structural goals set for the system and – of course – in terms of cost? In such a scenario, the goals of holistic and individually tailored treatment, personal care and the patient's viewpoint would remain unacknowledged and unimplemented. Other aspects of patient care and research would also fail to be emphasised.

In a seminar recently held in Brussels, John Dalli, the European Commissioner for Health and Consumer Policy, gave his full support to the work of patient organisations in the partnership programme, which actually is patient-centred. According to Commissioner Dalli, this partnership programme is needed to achieve the best results in holistic cancer treatment and to organise effective research.

Does the reason for the small-scale of this preparation work lie in our high-level preparatory bodies being blinded by their own eagerness to move on with the project? Finland is, after all, a model country in terms of having good, cost-effective clinical cancer treatment that also yields results.

The Finnish Parliament’s cancer network has adopted a modern approach, and the key professional groups from the patient's point of view, i.e. clinicians and nurses, have also been active in building new partnerships, having helped establish and support disease-specific cancer-patient associations.

Surely no one can doubt the importance and usefulness of independent cancer-patient organisations as providers of reliable and up-to-date information, peer experiences and peer support. Is this not the kind of work that should be taken into account in cancer strategies?

Hannu Tavio
Director of Operations - The Finnish Prostate Cancer Association
Vice Chairman - European Prostate Cancer Coalition Europa Uomo

 


From Fear to Hope - MASTERCLASS

From 19-22 September 2010 Europa Uomo, in conjunction with the European School of Oncology (ESO) and the European Association of Urology (EAU), held a Masterclass for patient advocates in Krakow.

Most of the Europa Uomo membership was present along with representatives of Eastern European countries, many of which are only at an early stage of establishing self help patient support groups for prostate cancer. One of the aims of the Masterclass was to help these countries to learn what is happening in other parts of Europe and to relate this to the needs of men with prostate cancer and the needs of their families. The establishment of support groups, the importance of “quality of life” and the art of living with prostate cancer were all considered. Read more here. 

 


Patient Guidebook For The Diagnosis and Treatment of Advanced Prostate Cancer

The patient guidebooks for the diagnosis and treatment of the locally confined and for the advanced prostate cancer are now available in Germany. Both patient guidebooks are based upon the S3 interdisciplinary medical guidelines of the highest evidence level, which was published during September of 2009. Authors of the patient guidebooks are physicians and 3 patient advocates from the German Prostate Cancer Support Organization, BPS. They were also members of the S3 medical guideline commission.

The patient guide book for the locally confined prostate cancer may be downloaded at www.aezq.de/edocs/pdf/info/pl-prostatakarzinom and for the advanced prostate cancer at www.aezq.de/edocs/pdf/info/pl-pca-II.pdf

 


"Forum Against Cancer Europe" (FACE) launched in the European Parliament, supported by more than 50 MEPs

On 23 June a new initiative of the European Cancer Patient Coalition (ECPC) entitled Forum Against Cancer Europe (FACE) was successfully launched at the European Parliament. The Forum Against Can-cer Europe" (FACE) has been set up to continue the successful dialogue of the European cancer patient community with European Parliamentarians, Commission and all concerned stakeholders. It was launched with a workshop entitled "More Cancer Research Needed in the EU: Cancer Affects Almost Every Family". The meeting was hosted by MEP Marisa Matias and featured high level speakers from the European Parliament, EU Commission, research community and patient groups. Already 54 MEPs are supportive of the new FACE initiative. (...)

Read all the PRESS RELEASE here.

 


Bone Health and Cancer: e-learning module

Bone Health and Cancer is an online educational module developed by an expert international steering committee of the Skeletal Care Academy. The module provides a detailed overview of bone physiology and bone remodelling in healthy bone and in cancer-related bone disease. The module is aimed at advocates who are interested in learning about the impact on bones of cancer and its treatment.

The Skeletal Care Academy is an education programme developed to ensure that patients with cancer-related bone disease receive the highest standard of multi-professional care, allowing them to enjoy fuller, healthier lives.

The Central European Cooperative Oncology Group (CECOG) hosts the Skeletal Care Academy, the programme partners include the European School of Oncology (ESO) and three European nursing organisations, EBMT-NG, EAUN and EONS. The Skeletal Care Academy is supported by Amgen.

Click here to access the module: www.skeletalcareacademy.com

 


Urology Week

13-17 September 2010

If you think all cancers are the same, you are wrong! Every type of cancer travels on its own path. While some seem to move at the speed of light, others are just wandering about. Usually, prostate cancer takes it very easy. Often it grows so slowly that it is not even discovered during a man’s lifetime. Prostate cancer cells seem to develop quite early in life. By the time you are 40, you have a 30% chance that your prostate may harbour cancer cells. By age 60, the chances are roughly 50%. Should you be worried? Not necessarily.

In many men cancer cells will not continue to develop into a harmful disease. Moreover, your lifetime risk of dying from prostate cancer is only about 3%. On the other hand, are you willing to take a chance? This is where screening plays a role. Wouldn’t it be smarter to detect in time and reduce your prostate cancer risk before it even gives you any symptoms? We at Europa Uomo invite you to visit www.urologyweek.org

 


Europa Uomo Member's Annual Report 2009

Our members have developed along 2009 a great of effort towards the prostate patients problems. Country by country, organization by organization you may find for each one the 2009 Annual report. Please refer to the "Members" section and select the country to access its 2009 Annual Report.  

 


Call for Nominations

ESO is pleased to announce its 5th Annual Best Cancer Reporter Award which acknowledges excellence in cancer journalism.

There will be a top prize of €10,000 and a runners up prize of €5,000. All winning articles will be published in ESO's Cancer World magazine.

Would you like to nominate a journalist who deserves to be recognised for writing outstanding stories about cancer?

Do you think that you should be rewarded for your clear and accurate reporting on cancer?

Materials published in a newspaper, magazine or on a website between 30 April 2009 and 30 April 2010 will be accepted. The closing date for nominations is 30 April 2010.

For full details and a nomination form visit www.cancerworld.org
or contact Corinne Hall +39 02 85 46 45 22, mediaservice@eso.net

 


Affiliate Partnership between EAU and Europa Uomo

The European Association of Urology (EAU) and Europa Uomo, have entered into an affiliated partnership as part of their long-term commitment to increase and improve patient awareness in Europe with regards to urological diseases.

Read the press-release here.

 


Talking the same language

"Cancer patients are starting to expect more in terms of communication with doctors
and cancer doctors are becoming increasingly aware of the need to rethink their way
of talking to patients.

A well-informed patient is likely to get the best benefit from medical care, and good
communication is therefore an essential part of good treatment."

Dr. Alberto Costa's editorial published in the "Cancerworld Magazine", n.º 32

Read all the article here.

 


National Prostate Cancer Awareness Month in the United States

Barack Obama, President of the United States of America, proclaimed September 2009 as National Prostate Cancer Awareness Month. Encouraging citizens, Government agencies, private businesses, nonprofit organizations, and other interested groups to join in activities that will increase awareness of what Americans can do to prevent and control prostate cancer.

More information in: www.whitehouse.gov

 


Proactive Prostates Initiative Call to Action
to prevent deaths from prostate cancer in Europe

The following Call to Action has been prepared by a coalition of groups, coordinated by Europa Uomo, and is being circulated to the advocacy community for your support. You can sign up to the Call to Action here:

Prostate cancer is the most frequent diagnosed form of cancer in men, accounting for 24.1% of all cases and the third leading cause of cancer deaths in 10.4% of men in the EU25 in 2006.

The figures on incidence and mortality become comparable to breast cancer in 2006. Prostate cancer will become the leading cancer in terms of incidence in the near future.

 

  Men PCa Women BrCa
  Incidence Mortality Incidence Mortality
2004 202,1 68,2 275,1 88,4
2006 301,5 67,8 319,9 85,3

Europa 25* thousands, IARC

 
Prostate cancers diagnosed by screening do not always need treatment and active surveillance is a reasonable option in selected patients. An individualised approach to treatment is advised since there is a possibility of overdiagnosis in 30% of patients compared with underdiagnosis in 15% of patients. However PCa can only be cured when it is treated in its early stages i.e. when the disease is organ-confined. Hormonal therapy, an important treatment, impacts on the quality of life but the side effects can be reduced by physical activity, nutrition and psychological support.

“I urge society to sit up and take notice of prostate cancer so that we can beat this disease, yes we can”, said Archbishop Desmond Tutu, the South African Nobel Peace Prize Laureate who has had prostate cancer, and fully supports the call to action

We have been encouraged by advances in prevention, diagnosis and management of prostate cancer, which have the potential to significantly reduce this burden in Europe.

However, a recent international survey indicated that although awareness of prostate cancer is improving:
 • Over half of people questioned are not aware that prostate and breast cancer have a similar prevalence
 • One in ten people surveyed thought that prostate cancer affects both men and women equally (when in fact only men have prostates)
 • Approximately, half of men underestimate their risk of developing prostate cancer.

We recognise that only a comprehensive strategy will ensure that men at risk are diagnosed earlier and receive optimal treatment with holistic care on an individual basis.

 

Hence, we call for the commitment and action necessary for men to have timely access to the right treatment. Specifically, we call on:
 • Recognition by governments of the morbidity and mortality burdens of prostate cancer, so that it can be made a higher priority in their health agenda.
 • Commitment from governments to ensuring sustainable support for basic research for a new biomarker and clinical research on treatment comparison.
 • Health professionals to educate their patients about the risk factors for prostate cancer, such as family history, ensuring those at risk are given appropriate information
 • Physicians to tailor treatment according to the individual patient, avoiding over- and under-treatment, through appropriate use of PSA testing to ensure that men receive the right treatment
 • Society to come together to build partnerships in helping to reduce the burden of the disease as well as identify common action and reducing the existing inequalities on access to treatment.

We commit to achieving these aims by working with all relevant partners to communicate these messages to appropriate policy makers and healthcare professionals.

 

Sign the Proactive Prostates Initiative Call to Action
We call upon governments, public health institutions, health care workers, and members of civil society to join this Call to Action. Together we must work towards ensuring that all men have access to the best possible information and treatment.

This group encourages interested parties to sign the Call to Action.

References

Boyle P, Ferlay J. Cancer incidence and mortality in Europe, 2004. Annals of Oncology 2005; 16: 481-488.

Ferlay J, Autier P, Boniol M et al. Estimates of the Cancer Incidence and Mortality in Europe in 2006. Annals of Oncology 2007; 18: 581-592.

JM Fitzpatrick, RS Kirby, CL Brough et al. Awareness of prostate cancer among patients and the general public: results of an international survey. Prostate Cancer and Prostatic Diseases (2009), 1–8

European Association of Urology Guidelines 2009, Gelderland BV Arnhem, The Netherland, March 2009.

MEPs Against Cancer Statement (MAC statement). Signed at 1st MAC conference
'Making Cancer a Priority' in the European Parliament on March 22, 2006.

ECPC Cancer Patient Summit report 'Making Cancer a Priority at the European
National and Regional level', April 2008.

These activities are made possible through an unrestricted educational grant
from the European Association of Urology and GlaxoSmithKline.
 


Launch of the European Partnership for Action Against Cancer

29 September 2009

Europa Uomo members speak out about Prostate Cancer

The European Commission is launching the European Partnership for Action Against Cancer on 29 September 2009 in Brussels. This high-profile event will be opened by the President of the European Commission José Manuel Barroso and hosted by Health Commissioner Androulla Vassiliou.

We are proud that Europa Uomo has been asked to contribute Cancer Patient/Survivor stories from across Europe. This is the first time that Europa Uomo members from Belgium, Finland, Portugal and Slovakia tell their story about prostate cancer and add their face to the European cancer map of 3,2 million EU citizens diagnosed with all cancers each year. This demonstrates the willingness of men to share their experience with others. It also gives us confidence that the patients’ voice will be listened to and included when the Partnership develops its actions. These are outlined in the "Communication Action Against Cancer: European Partnership" which broadly sets out the objectives for the initiative.

The overarching aim is to encourage and support EU member states in their efforts to tackle cancer by providing a framework for action. This is needed to identify and share information, capacity and expertise in cancer prevention and control. With an ambitious target to reduce new cancer cases by 15% by 2020, we are hopeful that the initiative receives wide ranging commitment and support that will save many patients’ lives.

We congratulate the Commission on having taken such an innovative Partnership approach to tackle cancer more forcefully across all countries of the European Union. Given this unique opportunity to reduce the burden of cancer, our organization calls on our government, politicians, policymakers and all stakeholders and sectors of society to participate and work together as partners.

Europa Uomo stands ready to contribute our part to help reduce the burden of cancer in Europe.

For more information about the Cancer Partnership and the Communication in all EU languages see: http://ec.europa.eu/health/index_en.htm http://ec.europa.eu/health/ph_information/dissemination/diseases/cancer_partnership_en.htm

Commissioner Vassiliou's speech

José Manuel Durão Barroso's speech

Video - A Life for Living
- a person portrait
of 5 cancer survivors
(.wmv)

Video message by singer Josep Carreras (.wmv)

Testemonial from cancer surviver
Vasil Koprda
(.pdf)

Testemonial from cancer surviver
Hannu Tavio
(.pdf)

Testemonial from cancer surviver António Pereira Pinto (.pdf)

Presentation on Cancer burden by Prof. Michel Coleman (.pdf)

Presentation on Future challenges
in Europe by Dr. Christopher Wild
(IARC)
(.pdf)

 


Urology Week

14 and 15 September 2009

The Urology Week - organised on 14 and 15 September 2009 - is a tool with which the European Association of Urology (EAU), the European knowledge centre of urology in Arnhem, wishes to stimulate people over 50 to visit their doctors when they suffer from such complaints.

You may find below the key themes for the 2009 Urology Week.

Key Points Urology Week 2009

Prostate conditions

• Most men will develop benign prostate disease and many of them will develop complaints for which medical and surgical treatments are available and both are highly effective.

• Prostate cancer can only be cured when it is detected in its early stages, i.e. when the disease is organ-confined; these treatments are often curative. PSA and PSA kinetics - PSA velocity or PSA doubling time - are helpful tools to recognise patients at risk for having prostate cancer.

• Cancers diagnosed by early detection programmes do not always need treatment. Active surveillance for selected patients is a reasonable option that still allows to initiate curative treatment during follow-up when needed.

• Hormonal therapy severely impacts on the quality of life but when needed, the side effects can be reduced by physical activity, nutrition and psychological support.

• New biomarkers for diagnosis and prognosis of prostate cancer are being developed.

• Recent outcome of the European randomised screening trial (ERSPC): screening saves lives but the study is still open.

• A family history for prostate cancer is not anecdotal; please check your sons and brothers.

Erectile dysfunction (ED)

• ED may be the presenting symptom of hypertension, hyperlipidaemia, diabetes and hormonal changes. It is important that all men with ED are assessed for the presence of such conditions.

• The urologist is the specialist who can best advise on the prevention and control of both lower urinary tract symptoms and ED, which are commonly associated with each other.

For more information, please look at www.urologyweek.org

 


24th Annual EAU Congress Stockholm (Sweden)
17-21 March 2009

Europa Uomo participated at this event in Stockholm (Sweden) with its own booth and hold at the same time its 2009 General Assembly.

 


Prostate Cancer Week in Cyprus

16-21 February, 2009

EUROPA UOMO CYPRUS is organizing a week against prostate cancer.

Please see detailed information and program at Members/Cyprus.

 


Suport Group's Training Course

5-8 February 2009
Holiday Inn, City Centre, Krakow, Poland

Target: Prostate patients organized support groups from Central and Eastern European Region including the Baltic States, Estonia, Lithuania, Latvia and Greece.

The principal objective is to help people share their knowledge, to learn from each other, innovate and work together effectively, to make a difference.

Please contact the Secretariat (europauomo@skynet.be) for further information.

 


Urology Week 2008

15-19 September 2008

Information
on the "Urology Week 2008"
in the website

www.urologyweek.org

 


Inaugural Conference Prostate Cancer Support Federation
United Kingdom, 28th April 2008

There are more than sixty patient-led support groups registered in England and Wales for men with prostate cancer and their carers, and many others exist in Scotland and Northern Ireland. The benefit of this is that many people affected by prostate cancer have access to other patients to turn to. The major disadvantage is that with so many small groups patients have not had a coordinated voice to represent their views, with the result that patients have had no real impact on Government or Health Department policy.

Recently four of the larger groups established the Prostate Cancer Support Federation (the Federation) which is also a member of Europa Uomo. A small core of patients representing these groups has been working towards developing the Federation to eventually encompass all of the UK based patient-led groups. As a result 65 support groups were invited to an Inaugural Conference which was held at Imperial College, London on 28th April 2008. Approximately 55 representatives of 24 patient-led support organisations attended and the reaction to the day and the aims of the Federation were strongly approved. This was seen as a successful start by the organisers on which to build the Federation.

The conference had both a Business section for members and a Technical section which brought together a number of leading practitioners from the UK including

Dr Chris Parker from the Institute of Cancer Research, and Royal Marsden Hospital
Prof. Mustafa Djamgoz, Professor of Cancer Biology, Neuroscience Solutions to Cancer Research Group, at the Imperial College, London
Mr John Anderson, Consultant Urologist at Sheffield Teaching Hospitals and Secretary of BAUS, the British Association of Urological Surgeons
and from Belgium Prof. Louis Dennis, Director of the Oncology Centre Antwerp and the Secretary of Europa Uomo

The conference was opened by John Dwyer, Chairman of the Federation, and Professor Mustafa Djamgoz, of the Imperial College, London who were hosting the conference along with Brig. John Anderson, Chief Executive of Prostate UK, sponsors of the conference.

The Business section covered the following:
- Federation history
- The purpose of this inaugural meeting
- Membership requirements
- Fees and other constraints
- Finance
- Elections of trustees and officers

An Immediate Work Programme was agreed which included:
- Establishing a membership register
- Setting up a National Help Line
- Development of a Federation Newsletter
- Development of a Regional structure

The Federation website can be accessed via the following link www.prostatecancerfederation.org.uk where a full report of the launch can be seen.

For further information please contact Mike Lockett at mike.lockett@tiscali.co.uk.

 


Local Activities Europe 2007
An overall look at main activities across Europa

During the recently held Annual Assembly of Europa Uomo (Milan, March 2008), affiliated local organizations presented their local activities’ report during 2007.

Looking at the various local reports, we may evidence that a lot of interesting activities are taking place all over Europe, managed by patient’s support groups, now grouped under the Europa Uomo umbrella.

To give a condensed image of the main activities developed in 2007, we selected some of them which in general were very successful in terms of results and popularity.

Belgium – US TOO Belgium
• Regular meetings with prostate patients - Café Santé
• Annual Walking Health Tour
• Annual Patient Day with urologists & general practitioners

Denmark - PROPA
• Take part in sport events
• Rotary, visiting the clubs, talking about prostate and prostate cancer

Finland - PROPO
• 10th year in action, celebration 15 Sep. on European Prostate Cancer day
• Patients Summer Meeting in Turku
• Discussion groups

Germany - Bundesverband Prostatakrebs Selbsthilfe E.V. (BPS)
• HAROW – a prospective study of the locally confined cancer of the prostate and the effects of choices of treatment.
5.000 patients to be followed for a period of 5 year
• Hormonal Therapy
• Active Surveillance
• Radiation therapy
• Operation
• Watchful Waiting

Ireland - Men Against Cancer (MAC)
• Public meetings to raise prostata awareness level with an overall attendance of 700 people.

The Netherlands - Stichting Contactgroep Prostaatkanker (SCP) & USTOO FORUM (Epcel-Ne)
• Free hot line to help patients
• Newsletters sent to all hospitals with an urological consultation, all radiation centres and all urologists.
• Information meetings are organized with prostate patients

Norway - PROFO Norway
• Free hot line to help patients

Poland - Gladiator
• Educational meetings with more than 800 patients and family members.

Portugal - Associação Portuguesa dos Doentes da Próstata
• Active participation at FIADC Forum (National Federation of Patients Support Groups).
• Local meetings with more than 700 pharmacists to discuss about prostate matters.
• Participation at National Urologists Congress.

Sweden - Prostatacancerförbundet
• Music gala performances to raise funds for prostata awareness activities.
• Activities on Sept 14th - Prostata day - together with doctors and nurses.
• Golf activities to increase prostata awareness among golf players.

Lithuania - Lithuanian Association of Prostate Cancer Patients
• Participation in national and commercial TV and Radio shows about protate cancer
• Publishing specific brochures about PSA test and national early prostate cancer diagnostic programme,
• Regional meetings of prostate cancer patients and oncourologists (200-400 participatants).
• Interviews and publications in central and regional press, about early diagnostics of prostate cancer
• Meeting with Minister of Health to disscuss about financial support for prostate cancer patients, discounting part of medicine expences
• Meeting and discussion about patients needs with staff of Oncology Institute in Vilnius
• Creating informational website of association.

 


Novartis support Europa Uomo Website

We acknowledge the unrestricted, educational grant from Novartis to introduce new designs and reorganisation of our website.

 


European Prostate Passport

Europa Uomo decided to create an European Prostate Passport to help men with prostate diseases to keep record of all information about their disease history.

This document is now being tested in its almost final form and will soon be introduced in several
countries of Europe, through the joint effort of local Prostate Patients support groups.

If you are interested in further details of the Passport and its implementation in Europe, please contact:
Lars G. Eliason
Tel: +46 709 405 980
E-mail: lars@eliason.se

Please click  here  to have a look at our Prostate Passport.

 


World Congress of Psycho-Oncology

Steering Committee, 4 November 2006 Antwerpen BELGIUM

Report :

The 8th congress of the International Psycho-Oncology Society (IPOS) took place in Venice, 16-21 October 2006. IPOS was created in 1984.

There were 1300 participants present. The vast majority of them were psychiatrists and oncologists. More than 60% of the speakers were medical doctors. Although the organizers of IPOS stress the fact that psycho-oncology today has a broad research agenda which is being carried out by investigators from different disciplines, (clinical) psychologists formed a minority at this congress.

I had the impression that very few cancer patients were present at this World Congress. And almost no communications were presented by cancer patients.

Abstracts of the 8th World Congress

The abstracts of 1085 communications are published in the journal : Psycho-Oncology, The Journal of the Psychological, Social and Behavioral Dimensions of Cancer, XV,
2006, suppl., 478 pp.

Prof. Dr. R. Valdagni (Milano) organized a ‘Special Symposium : Prostate Cancer and René Descartes : The Complexity of Decision Making’, symposium that was supported
by Europa Uomo.

Speakers :
- Levi della Torre, S. (Milano) : ‘Facing Illness’.
- Gray, R.(Toronto) :‘Decision making : A psychologist’s perspective’.
- Van daele, H. (Antwerp) : ‘Decision making : the patient’s perspective’.
- Valdagni, R., Donegani S., and Spatuzzi A. (Milano) : ‘Decision making in the multidisciplinary clinic’.

Personal considerations

Psychiatrists, oncologists, clinical psychologists, etc., have developed tools to measure fatigue, distress, depression, somatic disorders, etc.

But only the cancer survivor can judge his personal quality of life.

And his QoL can change from one day to the next. With many ups and downs. Feeling fine on Monday, and having pain on Tuesday.

In this broad field of study that is called psycho-oncology (or should we say onco-psychology, putting the stress on the psychology of the cancer survivor ?) the voice of the cancer survivor is frequently lacking. So is the voice of his/her spouse, children, etc.

To my mind, Europa Uomo should put more stress on the psychology of the cancer patient-survivor and on his family in the future.

Prof.em. PhD Henk Van daele