Europa Uomo / Did You Know? 01-2014 1
Europa Uomo Board
Top row, from left to right:
Hans Randsdorp (Chairman)
Tor Tausvik (Vice Chairman)
Max Lippuner (Member)
Ken Mastris (Acting Secretary & Treasurer)
Malcolm Duncan (Member)
Bottom row, from left to right:
Christian Arnold (Vice Chairman)
Erik Briers (ex-officio member)
p.1 Editorial by Malcolm G. Duncan
p.2 An end to second class citizenship
p.3 Message from the Treasurer and Acting
Professor Louis Denis awarded in Stockholm
p.4 Selbsthilfe Prostatakrebs, Austria
The Belgian foundation against cancer, “Stichting
tegen kanker”, organized an information day for
prostate patients in Antwerp, on May 10
New Board Europa Uomo Cyprus
Activities 2013, Czech Republic
p.7 Meeting of the People (Folkemødet) on the
island of Bornholm, Denmark
Summary on goals and activities of the Prostate
Cancer Patient Support Organisation, Germany
p.9 Hungarian League Against Cancer, Hungary
p.10 The PerSTEP project – A practical and theoretical
approach in the uro-oncological sector, Italy
p.11 The Lithuanian association of prostate cancer
How a difficult period may promise better days,
p.12 The Code of recommendations against prostate
2013 has been the most active year in the history
of the Swedish Prostate Cancer Federation,
p.13 The Blue Moustache, Sweden
p.14 New wonder drug for prostate cancer to “offer
vital lifeline” to thousands of men, UK
Malcolm G. Duncan - Newsletter Coordinator
Dear friends and colleagues,
Many many thanks for your immediate enthusiastic
support for this new editorial initiative of Europa Uomo
Europe. As you well know one of its professed
objectives is to favour a better knowledge and
understanding of our member organisations and their
praiseworthy efforts to increase awareness of this
terrible disease: prostate cancer.
Though an incomplete response to my short to the
point questionnaire on Health Care Services in each
member country impeded the completion of the report
entitled “An End to Second Class Citizenship”, the 12
responses promptly received clearly show the long
way we still have to go in order to achieve a health care
service already enjoyed by our lifetime partners: our
wives. Benefits which they have achieved mainly
thanks to their pragmatism and courage.
In Hungary, and they are not alone, the low level of
awareness among the adult male population tends to
lead to much delayed diagnosis and, hélas, to a heavy
death toll (c.50%). The Czech Republic is now tackling
this problem in a most pragmatic manner by erecting
billboards along the main roads around Prague and
Germany is without doubt the country to emulate with
240 patient groups spread across the country and
nearly 100 multi-disciplinary centres located all over
Denmark and Sweden have however informed us of
their commitment to fighting prostate cancer. It is said
that round 3 million European adult men have or are
Newsletter of the 23 European member Forums dedicated to improving knowledge of cancer of the prostate
Did You Know?
n°1 - 2014
Europa Uomo / Did You Know? 01-2014 2
being treated and, in spite of medical progress, it is
estimated that this number will double within the next
20 years and deaths may even treble, mainly due to
increasing longevity. In the course of 2013 our Swedish
friends organised 160 national events and,
notwithstanding a more modest population in respect
of many other European states, membership grew by
7% in only one year to almost 9,000. Major awareness
in Spain is now hoped to be obtained by a carefully
The Newsletter ends with a hopefully note on a new
drug discovery in the UK recently approved by the NHS.
We trust that this new initiative will do the trick and
lead to a more inter-active European association with a
most ambitious objective of saving adult male lives
from this insidious disease.
The Newsletter is destined to a vast European audience
composed of political, social and medical authorities,
pharmaceutical companies, as well as the mass media
and we await your comments on our first effort (See
the short questionnaire attached to the covering
ANY SUGGESTIONS ARE MOST
Kindly compile the questionnaire in the covering letter and
promptly email it to: email@example.com
An end to second class citizenship
Malcolm Galloway Duncan, Europa Uomo Italy, Italy
One of the common problems which still exists and
which is detrimental to the commitment of Europa
Uomo Europe to improve its visibility and consideration
by the outside world, including the medical profession,
is the difficulty often encountered to acquire
responses to market inquiries. Initiatives which aim at
bringing to the fore aspects like a certain discrepancy in
public health services in several member countries vis-
à-vis the male population in comparison with the
services provided to their female companions for life.
Based on the information so far received the only
exception appears to Poland, where prostate, bladder
and colon screening begins as from 45 and is totally
That is also in spite of the fact that Europa Uomo
Europe recently celebrated its tenth anniversary,
includes associations from 23 countries, and probably
very shortly will amount to 26.
The present inquiry, carried out on behalf of the
Newsletter, wishes to point out such discrepancies in
the general health services in several member
countries in the delicate area of common male cancers
which often prove mortal, and the enviable position of
their lifetime partners which is undoubtedly principally
to their merit. The enormous difference in awareness
of their bodies and physical needs is determined at a
very early age by the female population. A member of
the Europa Uomo Italia Board once carried out an
improvised inquiry on the prostate and the results
were both amazing and slightly humorous. Some men
knew little or nothing about the prostate and what it
served. Their difficulty in identifying its location would
have merited an award. However the most astonishing
part of the same inquiry was that some men were not
sure whether women were also equipped with a
prostate. Hungary was the respondent which expressed
most concern about the lack of awareness among the
male population which they believe may be partly
responsible for the high rate (circa 50%) of the death
toll from this disease due to late diagnosis.
Let’s take a look at the 12 complete answers which are
already in our possession. 9 of the 12 respondents
proudly confirm the safeguards guaranteed to the
genteel sex and, in some cases, at an already fairly
young age. In most cases such services are free of any
charge and they frequently receive an invitation to
effect a screening directly from the local Health
The situation differs greatly in many countries in the
treatment of the male population. Apparently, unlike
for members of the genteel sex, there appears to be no
service at all whereby the local health department
invites the male population to have a prostate
screening (PSA test). It can however be effected on
medical advice (France) in Italy and in Germany, but in
the last case, if it is merely to check the health of the
prostate, it is not free of charge. In Hungary at present
it must be advised by a urologist, otherwise it requires
payment. However Hungary is attempting to extend
this right also to family doctors (GPs).
With regard to the treatment of prostate cancer, only 4
of the countries which have so far replied to our
questionnaire have Multi-Disciplinary Centres (France,
Germany, Hungary and Italy). The most outstanding
case is undoubtedly Germany with 823 such centres, 96
of which are dedicated to the cure of prostate cancer.
Austria is in the process of setting up such centres and
other countries like Ireland and Spain, have specialized
centres which however do not yet responds fully to
Multi-Disciplinary Centre criteria.
It is hoped that we will shortly receive the 9 missing
answers and that Switzerland and the Slovak republic
will kindly provide missing data. We plan to publish the
completed survey in the next number of the Newsletter
and wish to take this occasion to thank all those
national associations which kindly replied on time and
thus permitted us to publish this preliminary report.
Europa Uomo / Did You Know? 01-2014 3
Message from the Treasurer and
First of all I welcome this newsletter as a platform of
sharing information between our friends in Europa
It’s an honour and privilege that I will present the
reports at the General Assembly in London, and hope
to see as many as can attend.
As this is our tenth year we must ensure that the
organisation carries on from the hard work done by our
founders Louis Denis, Tom Hudson and Alberto Costa.
We are the voice of patients in Europe and we must be
We have to be prudent in our spending as raising funds
is becoming more difficult for all organisations.
We are trying to get more members mostly from
Eastern Europe and if any group can assist please
contact the Secretariat - we need your help to achieve
our working plan.
The Board will continue to act in an open manner and
will continue to fight for our goals.
I would like to take this opportunity to thank Louis,
Brigitte, Anja and Hans for their support and assistance
since the last GA.
Let’s enjoy our 10
birthday and agree the way forward
for Europa Uomo in the spirit of our founders.
Professor Louis Denis awarded in
Anja Vancauwenbergh, Secretariat Europa Uomo,
The 29th annual congress of the European Association
of Urology (EAU) was organised in Stockholm from 11
to 15 April 2014. This interactive and global oriented
meeting opens traditionally with a national cultural
manifestation of the host country and the proclamation
of the annual awards to elected members.
About half of the 14.000 participants were present for
this gala evening in
instantly with the
Divine Trio in
Sinfonietta and the
male choir of the Studentsångare who interpreted old
Swedish songs in a light and sound show followed by a
medley of popular Italian opera arias.
Professor Per-Anders Abrahamsson presented the
series of awards 2014. One of the important awards is
the Frans Debruyne Life Time Achievement Award,
given since 2005, for a long and important contribution
to the activities and development of the EAU. Professor
Denis was elected by the EAU Board to accept this
Professor Per-Anders Abrahamsson, as master of
ceremony, called attention to a number of scientific
awards, the launch of international societies and
presentations, to the dozens of congresses and
symposia and hundreds of peer reviewed publications
produced by Professor Denis, MD, FACS, in addition to
his important work in scientific and organizational work
on cancer as well as his vocation as an urologist.
The presidency of the European Organisation for
Research and Treatment of Cancer (EORTC), his board
functions in the International Union against CanCer
(UICC) and the foundation of the European Journal of
Cancer (EJC) which happened outside the EAU sphere
of interest. He finished with a joke if anybody believed
that Louis had edited or co-edited more than 50 books.
Professor Denis answered in his typical Antwerp style
that anybody with an EAU membership number of
0103 must have had plenty of time to do everything he
did. He thanked EAU for this recognition of the work of
his old and new teams and the global network created
over the last 50 years. Indeed he feels that without the
support and dedication of his teachers, colleagues,
collaborators, friends and, for sure, his family he would
never have achieved such goals.
Professor Denis focused especially on the thousands of
collaborators and nurses that had taken care with the
optimal urological treatment of the patients while ha
had been travelling the world for science.
He dedicated this award to all and in his personal
sphere to three collaborators: Doctor Pierre Nowé, his
Europa Uomo / Did You Know? 01-2014 4
right hand in the Antwerp Hospital Network; Professor
Frans Keuppens, his right hand in the University
Hospital of Brussels; and Ms. Brigitte Dourcy-Belle-Rose
for 40 years of support and dedication to all initiatives.
He ended with an advice to the young colleagues. The
EAU is an open house built on a rock foundation of
collaboration. All subgroups in urology and related
specialties are welcome. An open house for specialists
from the five continents. An open house for equal
opportunities, despite your personal preference in
specialized areas of medicine, nursing or health
As soon as EAU invites you to serve don’t delay but
immediately accept. The future guarantee for optimal
medical treatment and personal holistic care will
become more complex and financially unstable. “Plus
est en vous”. We need the support and dedication of
each one of you.
One last detail: Professor Frans Debruyne started his
career as co-assistant with Pierre Nowé in the St. Jan
Hospital at Bruges. The circle (of generations) is closed.
It has proved to be a fertile, progress-packed half
century of urology.
Ekkehard F. Buechler, Chairman Selbsthilfe Prostata-
Selbsthilfe Prostatakrebs, the Austrian arm of Europa
Uomo, was set up in 1997 and was one of the founding
members of Europa Uomo Europe. Its main objectives
concern an ever better awareness and care of prostate
patients by prompting opportune preventive medical
care through regular monthly lectures by medical
experts. They are then promptly inserted in our
website and are also published in local dailies. We are
at present in the process of producing a series of
brochures and leaflets for distribution in Austria.
The Belgian foundation against cancer,
“Stichting tegen kanker”, organized an
information day for prostate patients in
Antwerp, on May 10th 2014
Rik Cuypers, US TOO Belgium, Belgium
The Foundation against cancer enjoys a national and
international recognition and therefore managed to
gather together ten speakers and an audience of 220
for its symposium on prostate cancer.
The medical expertise present was impressive and the
foundation met one of its goals, namely to inform the
population. It was Interesting to note the presence of
non-patient men in the audience.
The titles of the papers were: "Do all prostate cancers
have to be treated?", "An overview of the different
treatments of prostate cancer", "Incontinence",
"Impotence", "Hormone treatments", "What to do in
case of the failure of hormone treatments " and "The
active role of the mature patients".
The most recent medicines available to Belgian patients
were presented, and we noted a big shift from the
development status to daily practice. A great deal of
emphasis was put on active surveillance and the
influence of the director of the Belgian Us Too
association was adamant on that point. A member of
the board of this association, Henk Van daele, spoke as
a non-doctor and demanded the patients to be treated
interprofessionally, moreover in an interdisciplinary
The speakers evaluated the quality of their
presentations, by encouraging questions from the
public and then demanding them to express their
opinion on the same.
The new Board of Europa Uomo Cyprus was elected at
the general assembly held on 29th March 2014. At its
first Board meeting on 8th April the following positions
were decided: Andreas Moyseos, President; Erol Riza,
Vice-President; Panajiotis Neophytoy, Secretary; Kypros
Erotokritou, Treasurer, and Stayros Voniatis, Michalakis
Kakoyli and Neophitos Michael as members.
Activities Czech Republic 2013
Dalibor Pacik, Chairman Europa Uomo CZ, Czech
Billboard campaign in Brno and Prague
An edifying campaign has been realized in the cities of
Brno and Prague. In each town 20 billboards informing
Europa Uomo / Did You Know? 01-2014 5
about the risk of prostate cancer were installed. These
billboards included also the link to further information
(counseling online included – www.europauomo.cz).
Auspices of the Mayor of the Capital of the Czech
The project Europa UOMO CZ was
held under the auspices of the
Mayor of Prague, the capital city of
the Czech Republic, prof assoc.
Bohuslav Svoboda, M.D. We had a
great opportunity to promote our
project on the web site praha.eu
and on the large TV screens on the
premises of the City Council in
Škodův Palace and in the City Hall
on Mariánské square in Prague.
Promotion on the large TV screens in the Prague
Large TV screens promoting Europa UOMO CZ
campaign supporting fight against prostate cancer have
been installed on the premises of the City Council in
Škodův Palace in Jungmannova street and in the City
Hall on Mariánské square.
Booklet: Prostate - for men and women who love
Europa UOMO CZ in cooperation
with Europa Uomo and with the
support of its partners has
published a booklet titled:
Prostate - for men and women
who love them. You can browse it
on the following web link:
ra.php or order it free of charge by
City light show cases and Europa UOMO CZ
promotion in the city of Brno
During September 2013
posters informing about the
danger of prostate cancer
and about the opportunity
to get the free of charge
booklet “Prostate- for men
and women who love them”
have been installed in the
City Light show cases located
on the public transportation
stops in Brno, with the kind
support of Brno City Council.
Press conference “Urology week – prostate
Europa UOMO CZ in cooperation with the European
Association of Urology and the Czech Urological Society
organized on the occasion of Urology Week on
September 17, 2013 a press conference in hotel Paris in
Prague. The professional lectures were delivered by
Professor Babjuk, the President of the Czech Urological
Society, and prof. Dalibor Pacík, the Chairman of
EUomo CZ. Milan Uhde, the Chairman of the Czech TV
Council and Zdeněk Žurman, a publicist and writer,
participated in the roles of patients.
The conference was very well attended by the major
Czech media houses and all lectures provoked excited
discussions, which inspired numerous articles published
in the media and enabled to inform the lay public
about these important topics. More information can be
found on www.europauomo.cz.
Europa Uomo / Did You Know? 01-2014 6
Representative of Europa UOMO CZ
Professor Pacík, the Chairman of Europa UOMO CZ,
who was awarded the Highest award of South
Moravian Region, was invited on the occasion of the
visit of the President of the Czech Republic Miloš
Zeman to the city of Brno, for a short informal meeting.
Europa UOMO CZ and the Day of Men´s Health
This edifying event was the grand finale of the Urology
week. It was organized in cooperation with Brno
University Hospital. On September 27, 2013 a large tent
was installed on the central square in the Brno city
centre (Náměstí Svobody). Since 11 a.m. until 6 p.m.
urologists from Brno University Hospital informed lay
population (free of charge!) about urological diseases
endangering male population. Even though this event
was focused on male urological diseases, it was also
addressed to “women who love them”. Interest and
attendance exceeded expectations as almost 300 men
and women attended the tent with active questions.
This event was held under the auspices of MUDr.
Roman, Kraus, MBA, Director of University Hospital
Brno, Prof. MUDr. Jiří Mayer, PhD, Dean of the Medical
Faculty of Masaryk University, JUDr. Michal Hašek,
Hetman of South Moravian Region and Roman
Onderka, the Mayor of Brno, Milan Uhde, the Chairman
of the Czech TV Council and last but not last the
Executive Committee of Czech Urological Society.
More information can be found on the following link:
Urology week and Europa UOMO CZ and other
Europa UOMO CZ paid an extraordinary attention to
the Urology Week and the Day of the Prostate and
organized numerous events in association with this
Topics such as prostate cancer have been discussed
and popularized thanks to the very popular live talk
show “(She is) Home alone” (which has very high
rating) focusing mainly on female target audience; but
surprisingly it was also followed by a large proportion
of men. On September 20, 2013 Professor Pacík was
invited to the public Czech TV; the interview was
followed by approximately one hour on the online chat
with the viewers who had the opportunity to ask
Professor Pacík questions related to this issue.
More information can be found on the following link:
The same topic has been refreshed several days later
(September 25, 2013) during different live talk show
„Good morning“ focusing on a different target
More information can be found on the following link:
The media attention was further emphasized by the
interviews broadcasted by Český Rozhlas (Czech Radio
Broadcasting) and articles published in numerous
newspapers distributed for free, which focus on wide
target population (Metro magazine etc.).
Europa Uomo / Did You Know? 01-2014 7
Meeting of the People (Folkemødet) on the
island of Bornholm
K.B. Madsen, Chairman PROPA; Denmark
Each summer a public meeting with the participation of
many Danish politicians is held in Allinge on the island
of Bornholm. The meeting attracts about 60.000
people, of which many are top politicians and
In 2014 the meeting will take place from Thursday June
12th to Sunday June 15th. PROPA, the Danish Prostate
Cancer Society, will take part in the meeting and has a
stand in a tent on the Giant beach near Allinge harbour.
In addition to having the stand, PROPA will take part in
various events on each of the four days of the meeting.
The first event will be in the tent of the Senior Citizen
Society (Ældresagen) on Thursday June 12th from 4 pm
to 5 pm with the title “Sex, Love and your (im)possible
There they will meet Margrethe Kähler, sexologist from
Ældresagen, Bjarne Oxlund, chairman of “Sex and
Society” and Jens and Marianne, a couple from the
Danish Prostata Cancer Society in the “Ministry of
Love”. It amounts to an open story/debate about the
challenges for the elderly and those suffering from this
disease with respect to sex and the love of life.
Love, eroticism and sex – is the door to these sensuous
oases which may be closed, when we become older or
sick. Our protestant past which connects sex with
propagation and the widespread worship of young,
beautiful and healthy people in advertising and films
has created a taboo about elderly and sick people as
being sexless. This is not true, but it can represent a
Two experts and a couple hit by prostate cancer will
talk about these normal/abnormal conditions and put
music and words into some of the feelings that come to
the surface when a couple is hit in their sexuality.
On Friday June 13th from 9.00 to 10.00 PROPA has
been invited to participate in a debate at the platform
of Danish Industry Society in Klostergaarden, Allinge
with the title “Men – the weak sex of the health
The debate is led by a journalist, Martin Krasnik, with
the participation of the Danish health system, a
practicing doctor and a nurse, a member of a trade
union, a politician (health spokesman) and a
psychologist plus the Chairman of PROPA, K.B. Madsen.
Danish men with low education live 13 years less than
a group of women with high education. In nearly all
health areas men have a poorer prognosis than
women. Why do we have this sex-based imbalance?
How can we eliminate these differences?
On Saturday June 14
, from 11.30 to 12.30, PROPA will
participate in an event in Meningsministeriet (the
Ministry of Opinions) about “Participation of the
citizens in the health system – a pure utopia?”
More citizens – fewer patients. This is the heading used
by the government for their proposal for a change of
the Danish health system. The citizens should be
consulted more, when they have to go through a
longish treatment. This results in better treatment,
better satisfaction and fewer re-admissions.
The intensions are fine, but the reality in many
hospitals is quite different according to a study. Far too
few citizens have a real influence on how they get the
best result from their hospitalization.
The debate on this subject will be led by the journalist
Kurt Strand with participation of politicians, hospital
doctors and a member from PROPA.
On Sunday June 15th from 11.30 to 2 pm there will be
an event in the PROPA tent: Life with prostate cancer –
a Nordic survey.
PROPA has in cooperation with the 3 other Nordic
patient organizations carried out the first Nordic survey
about prostate cancer patients’ experience with the
treatment system and the subsequent quality of life.
More than 6.000 men have answered the questions –
this makes this survey unique. The survey has been
controlled by “Kompas Kommunikation” and financed
by Astellas Pharma. The results of the survey will be
shown on a large screen in the PROPA tent, and will be
commented on by PROPAs Chairman, K.B. Madsen,
Head of the Secretariat Jens Ingwersen and by other
Summary on goals and activities of the
Prostate Cancer Patient Support
Günter Feick, President BPS, Germany
RESEARCH, GUIDELINES, SPECIALIZED TREATMENT,
OUTCOME MEASUREMENT, AND QUALITY OF LIFE. All
matter to patients and drive the activities of the
Prostate Cancer Patient Support Organization of
Germany, the BPS, www.prostatakrbs-bps.de.
Recognizing that the absence of clearly defined
goals, tends to make us strangely loyal to per-
forming trivial daily acts, the BPS has agreed to work
for the following goals:
Europa Uomo / Did You Know? 01-2014 8
1. Medical networks of competence for the
advanced prostate cancer
2. Therapy guidelines evidence based on most
current medical knowledge
3. Enhanced participation in risk adapted early
detection of prostate cancer avoiding
4. Quality indicators for measuring health outcome
of prostate cancer treatments
5. Coordinated prostate cancer research
6. Certified prostate cancer centers
7. Representation in public health and other
committees influential in prostate cancer care
8. Annual symposiums on the status and strategy
of prostate cancer treatment with physicians,
health insurances, Ministry of Health, Federal
Joint Committees, German Cancer Aid and
German Cancer Society
The following information regards today’s status of
achievements pursuing BPS goals.
Ad 1. German Working Group on Castration Resistant
Prostate Cancer (GWG-CRPC), http://www.gwg-
crpc.com/index.php/de/gwg-crpc, established in
2012, with membership of 12 university clinics for
urology. Coordinated research and specialized
treatments are landmarks of the GWG-CRPC.
Ad 2. Guideline for the diagnosis and treatment of
prostate cancer prepared and publicized 2011 was
updated Mar 2014. 3 BPS representatives served in the
guidelines commission. Guidelines for the treatment of
osteonecrosis of the jaw and guidelines on psycho-
oncological treatment were finalized and published in
2013 with one BPS representative serving in each
guideline commission. 3 Patient guidelines for the
diagnosis and treatment of prostate cancer were
finalized and published in 2012. 3 BPS representatives
served in the patient guidelines commission.
Ad 3. BPS promoted risk adapted early detection of
prostate cancer in public.
BPS supports and works in the study commission of the
Preference Based Randomized Trial for Evaluation of
Four Treatment Modalities in Prostate Cancer With
Low or “Early Intermediate” Risk:
BPS supports the PROBASE study aiming to establish a
standardized and risk-adapted prostate cancer early
Ad 4. Set of patient centered treatment quality
indicators for measuring health results in the treatment
of localized, low and medium risk prostate cancer was
completed 2013 by an international group of physicians
and patient representatives. The project was supported
by the International Consortium of Health Outcome
cancer/ and financed by Movember:
http://au.movember.com/. Publication of this pro-
ject in medical journals as well as a patient paper on
necessity and benefits of measuring results will occur
ICHOM quality indicators were added to the guidelines
on diagnosis and treatment of prostate cancer and
were added to the reporting requirements of prostate
cancer centers in Germany.
Ad 5. Status and strategy of coordinated prostate
cancer research was presented and discussed at two
international meetings representing BPS and EUomo.
EAU has agreed to work with EUomo and BPS on
developing a plan for coordinated research in
pursuance of the EU research program horizon 2020.
Ad 6. 95 prostate cancer centers have been certified in
Germany. Certifications are contingent upon fulfilling
structural innovations and results relevant to objectives
set by the national certification committee. Centers will
be tested and re-certified bi-annually. Centers must
report health results of patients during their entire live
cycles. One BPS representative serves in the
certification commission. Most of the centers have
cooperation agreements with one or more BPS support
The initiative for bringing about prostate cancer
centers in European states at large has matured and is
close to finalizing the structural aspects and results
requirements for centers certified in Europe. One BPS
and EUomo representative serve in the relevant work
Ad 7. Several BPS representatives serve in various
public health groups http://www.english.g-ba.de/
and other commissions in the interest of prostate
cancer patients and their significant needs. There,
patient representatives are highly welcomed, have
gained a reputation as knowledgeable, determined and
co-operative advocates of their fellow patients.
Ad 8. An annual status and strategy conference of all
stakeholders in prostate cancer care is considered a
highly influential, advancement promising tool for
patients and the BPS. As we can account for substantial
progress in the achievements of our other goals, we
feel ready to now tackle BPS goal 8 during the months
The 240 BPS local support groups, 7 regional/state co-
operations and 9 BPS committees call upon a good deal
of organization and motivation for working the 120.000
Europa Uomo / Did You Know? 01-2014 9
012.pdf. In order to assure quality and reliability in BPS
services information and education for support group
leaders are provided by means of 9 seminars and 9
online lectures, more than 30 BPoSt and 3 BPS
magazin, per year.
The BPS home page with more than 600 pages of
prostate cancer information and between 3.000 to
4.000 clicks per month is another valuable source of
information. For those wanting to communicate with
other patients about our disease the BPS/KISP online
forum, http://forum.prostatakrebs-bps.de/, with
more than 80.000 postings and almost 4.000 users is a
platform of rapid and diversified information exchange.
At almost every hour of the day 80 individuals are
simultaneously using this forum.
For patients preferring telephonic information the BPS
operates a toll free patient hotline,
http://www.prostatakrebs-beratung.de/, staffed by
trained and experienced BPS members. The hotline is
quality controlled to include customer feedback
recording and is used by close to 1.000 information
We could not manage our workload without our highly
dedicated staff of professionals in BPS. That goes
without saying – but it has to be said, now and right
here. Thank you colleagues for your great services.
Most supportive and basic to our abilities and success
is the great support from the German Cancer Aid, the
The German Association for Urology:
and the German Cancer Association:
are our reliable partners supporting us in the fields of
science, medicine and public health.
A hearty thank you goes out to the dedicated full time
and voluntary supporters in the EUomo office and the
Oncologic Center at Antwerp, with Prof. Louis Denis
who continues giving his support and advice to
member organizations of EUomo.
Last but not least BPS values the camaraderie with our
fellow organizations in EUomo and the many gratifying,
Regular activities of the Hungarian League Against
Cancer in prostate cancer issues.
In Hungary the yearly number of new prostate cancer
cases amounts to 4000 persons and the mortality rate
in the same disease averages 2000 persons. Many of
the new prostate cancer patient cases are already
frequently diagnosed late and the disease is already at
an advanced state. This is one of the main causes of the
high mortality rate.
The main cause of this tardive diagnosis is the very low
level of prostate awareness among the Hungarian male
community. Since 2009 the Hungarian League Against
Cancer has organized a series of events in order to
overcome the problem of the above mentioned low
prostate awareness among Hungarian men.
Our activities may be summarized as follows:
- Since 2009 we have organized events on
prostate cancer every third week in June, as part
of the prostate cancer initiative during the
European Men’s Health Week. Many local
organizations of the League take part in these
events. A regular topic in such activities is
prostate cancer with lectures and discussions
about the necessity of prostate awareness, e.g.
last year more than 20 of our local organizations
organized such events in the European Week of
Men’s Health and attracted about 2500
participants. Beside the health promotion
lectures, time is dedicated by the organizer to
prostate screening by the participants with the
help of an urologist and, in addition to such
possibilities, some PSA screening is also
- The Hungarian “Movement Movember” has
offered a screening device for PSA screening as
from 2012 and we can use it regularly and not
only during the European Week of Men’s
Health, but also during local “Health Day”
Europa Uomo / Did You Know? 01-2014 10
- Thanks to the help of the Movember Movement
and a pharmaceutical company, the Hungarian
League Against Cancer has edited two flyers on
prostate cancer and the prostate awareness
issue. I display above a copy of one of these
flyers. Some information is provided about the
frequency of the disease and the necessity of a
regular medical control once you have reached
50, as well as some information about PSA
- The Hungarian League Against Cancer in
Budapest organizes a Men’s Health Club. The
participants are mostly prostate cancer patients.
The members of the club meet monthly.
- The Hungarian League Against Cancer has
lobbied with the National Health Insurance Fund
for financial aid for the new medical care for
bone metastasis of prostate cancer patients and
these activities have been very successful.
- In the yearly conference of uro-oncologists in
Hungary, the Hungarian League Against Cancer
regularly presents the activities of the League in
the various prostate cancer events.
The PerSTEP project – A practical and
theoretical approach in the uro-oncological
Tiziana Magnani, Manager of the Prostate Project
Programme organized on behalf of SIURO and CIPOMO,
The international scientific community now recognizes
that the multi-disciplinary and multi-professional
approach in oncology assures the optimum treatment
of patients in all phases of prostate cancer as well as
assuring the best response to all therapies and, at the
same time, favours the timely adoption of re-abiliative
and integrative therapies and an efficacious reaction
should the disease eventual re-appear.
The respective competence and synergy which is
assured by the presence of specialists in all fields, an
indispensable requisite for a multi-disciplinary and
multi-professional approach, are invaluable factors in
the treatment of prostate cancer which, according to
the state of the disease, may thus be coped with by
means of a whole series of therapies such as surgery,
radiotherapy, brachytherapy, hormone therapy,
chemotherapy, or simply by monitoring the
advancement of the disease by means of periodical
controls known as “active surveillance” or “watchful
In other words a team of a whole series of specialists
and therapies who are involved in the diagnosis and
treatment: a urologist, an oncologist, a radiotherapist,
an oncological doctor, that is without overlooking,
above all in certain phases of the cure (diagnosis,
therapeutic and re-abilitative, andrological, physio-
therapeutic, geriatric, specialized nurses, psychological,
radiological and uropathologic aspects).
The interaction of a team of experts organized and
structured in this manner places the patient at the
centre of attention, enabling him to also participate in
the choice of the therapies according to the declared
objectives of the same, thus avoiding any controversy
on the choice of options and multiple consultations
which favours the adoption of the optimum therapies.
This theme has been at the centre of scientific debate
for some years. That is bearing in mind the Discussion
Paper of the European School of Oncology entitled
“The requirements of a specialist Prostate Cancer Unit”
of 2011; the editorials of Louis Denis, urologist and for
many years General Secretary of Europa Uomo; the
contributions of Leonard Gomella, Director of Urology
at Thomas Jefferson University of Philadelphia, who set
up the first multi-disciplinary clinic some 18 years ago;
Riccardo Valdagni, Director of Radiotherapy, Oncology
1 and of the Prostate Programme and head of the
Prostate Cancer Unit at Istituto Nazionale dei Tumori of
Milan; or the space dedicated to this subject by
scientific bodies in their periodic congresses. However,
unfortunately, while several European countries such
as France, Germany, the United Kingdom and the
Netherlands have developed such Multi-Disciplinary
Centres for patients suffering from prostate cancer,
other countries including Italy still deal with prostate
cancer solely or mainly in a monodisciplinary manner
which leads to the fragmentation of medical
information which both advises and obliges the
patients to contemplate the consultation of a number
of specialists in a variety of medical therapies.
This has recently led to the birth of the PerSTEP
project, a practical and theoretical programme in the
uro-oncological sector. An educational project
promoted by the Società Italiana di Urologia Oncologica
(SIURO) together with the Collegio Italiano dei Primari
Oncologi Medici Ospedalieri (CIPOMO), coordinated by
Giario Conti, Roberto Labianca and Tiziana Magnani.
The main objective of this initiative is a radical cultural
change in favour of a multi-disciplinary and multi-
professional approach for the treatment of patients
suffering from prostate cancer. That is promote the re-
organisation of medical centres also by a sharing of
data and experience.
The PerSTEP project was launched in June 2012 with
the participation of four centres: Istituto Nazionale dei
Europa Uomo / Did You Know? 01-2014 11
Tumori in Milan, Ospedale Sant’Anna of Como,
Policlinico Sant’Orsola Malpighi in Bologna, and
Ospedale Giovanni XXIII in Bergamo. This amounted to
a project developed by a variety of medical centres,
some already operating in a multi-disciplinary manner,
whereas others that had chosen to adopt a multi-
disciplinary approach for the future treatment and cure
of prostate cancer.
Since that date PerSTEP has received the request of
numerous specialists to join the project and, in June
2013, PerSTEP inaugurated Phase Two. Twenty further
medical centres have expressed their wish to
participate in the PerSTEP project and are at present
re-organising themselves in order to adopt a
multidisciplinary and multiprofessional approach able
to adequately respond to all the needs of patients
suffering from prostate cancer.
The PerSTEP communications project is also supported
by SANOFI, a leading global pharmaceutical company
also present in Italy.
The Lithuanian association of prostate cancer patients
is a non-profit, non-political, non-governmental
organization, established in 2000. The association aims
to mobilize efforts and actions supporting the
implementation of a common Lithuanian people's
expectations of the prostate cancer control for full
implementation. Now one of the main objectives of the
association is to ensure an effective early prostate
cancer detection program.
This program has been operational in Lithuania since
2006 and has shown most promising results. A steady
decline of stage III prostate cancer incidence was
observed. The study showed that early prostate cancer
accounted for 60.9% of the cases in the study group
(other countries reached 80% and more). It was proven
that an early detection program significantly increased
the chances of men to be diagnosed with prostate
cancer at an early stage and decreased the mortality
rate among men from prostate cancer.
Our association aims to add a prostate cancer early
detection program to the list of other screenings
(breast, colorectal and cervical cancers). At this
moment it is the most important goal of the Lithuanian
association of prostate cancer patients. We strongly
believe that other European countries will agree with
Portugal – How a difficult period may
promise better days!
Joaquim da Cruz Domingos, APD Prostata, Portugal
The Portuguese Prostate Patients Association was born
officially in 2004. Today, after 10 years of activity the
Association is again in a situation that looks like a start
In the last two years we have lost half of the Executive
Board - the Founder and President, the Relations with
the Industry Director and the Treasurer. These
enthusiastic members were the main pillars of the
Association, all very motivated and active in their fields.
On different dates, the three gentlemen passed away.
Now, it is like restarting everything from the beginning.
At the 2013 General Assembly a new Executive Board
was elected, but most of the seven members were not
well prepared to start at once, doing what it was
expected from them. But, difficulties many times reveal
unknown capacities and now, after only one year,
things are starting to happen and new ideas are in the
One of our first actions was to make the most from
what we had already: the local newsletter, the website,
the SOS public phones and a more frequent, direct and
personal contact with Association members.
The local newsletter is now more directed to outside
subjects about prostate, covering news not well
covered by the Media. This is only possible thanks to an
exhaustive work of research done by volunteers to find
news and information through the Internet about
prostate cancer, that does not usually appear in the
general mass media and press.
The website is becoming more attractive, as we have
now created a special space for short questions from
visitors that can be answered in as little as 48 hours.
This very recent initiative is proving very promising, as
Europa Uomo / Did You Know? 01-2014 12
we are receiving three or four inquiries every day. If on
one hand this represents a lot of work to do, on the
other hand it shows how our visitors are “hungry” for
answers. Still through the website, with one phone line
working four hours a day every working day, we have
now evolved a second line working mainly at night 6
hours a day, every day of the week.
The new members of the Executive Board are now
much more aware of the real needs of prostate
patients and their families, and new projects are
starting to arise. Probably not all will become possible
to put in practice, but others are very interesting and
will just need a more focused workload around the
The present team is working very hard, and promising
results look likely to start to show up.
Within one year or so we hope to have recovered from
the difficult moments lived in 2012 and 2013.
As we are used to say, “hope” is the last thing to die!
The Code of recommendations against prostate
cancer. FEFOC/Us Too have recently produced a set of
16 recommendations against prostate cancer. Some
samples of it have been already sent to the Europa
Uomo Secretariat. They have been written in Spanish
although a future action is to translate the Code which
is in Catalan (our mother language) into English. The
Code enjoys the auspices of Europa Uomo and
Prostatenet Europe. Some 60.000 samples are
distributed among 500 Spanish hospitals (mainly to
Urology and Oncology Nurses). The distribution is done
by the network of Ipsen Lab. On the other hand FEFOC
itself is distributing another 9.000 samples among
Associations, Administrations, civic centres and other
Foundations. It is the first initiative of that type
organised in Spain.
Recommendations 1 to 4 give information on age risk,
life style risk factors and hereditary predisposition.
From recommendation 5 to 8, the Code deals with
early diagnosis and the need to consult with a
multidisciplinary team. From recommendation 9 to 12,
treatment options are outlined and eventual secondary
effects are specified. Lastly, from recommendation 13
to 16, support and changes in previous attitudes.
Among us prostate cancer is a big and little known
disease. For instance, there are no famous people who
openly confess any such diagnosis through the media in
great contrast with the Spanish women who suffer
from breast cancer, who always comment on their
condition and receive and give each other cooperation
and psychological support.
We hope our initiative with the Code will help to
change some old fashioned attitudes predominant in
our males and in our country.
We do not know of the existence of Codes against
prostate cancer in other languages and in other
countries. Nevertheless from hereon we propose that
Europa Uomo collects the different versions produced
by the members of our European organization in order
to design a comprehensive one reflecting this
important activity as a whole.
Online activities. The FEFOC’s online page
(www.cancerdeprostata.org) is very active.
Generally speaking we are asked more frequently by
patients’ relatives than by the patients themselves.
Nevertheless sometimes it is very difficult to answer.
For instance, in the case of young patients when they
are telling us the drama of their life after
prostatectomy and impotence. As all of you know they
suffer from very serious problems ( as couples, at work,
from depression, or a lack of understanding). We have
no solution at present. We desperately need better and
less aggressive treatments especially for young
patients. Urologists, industry, Europa Uomo, all of us
must ask ourselves: Are we doing enough for those
young patients? We need more resources, more
dedication, more imagination and new ideas.
Support groups and psychotherapy. FEFOC is a leading
support group which has been devoted to prostate
cancer patients since 2000. These groups are always
conducted by an oncologist and a psychologist, and
sometimes have other professionals to explain some
topics of general interest. Different themes are treated
in the sessions (held monthly), from treatment related
questions to quality of life aspects. Also news on
prostate cancer are discussed.
When needed, individual or couple therapy is offered.
We organize public educational meetings on prostate
cancer every three years in order to inform the public
about this cancer and inform them on the latest
treatments and psychosocial aspects.
2013 has been the most active year in the
history of the Swedish Prostate Cancer
Torsten Tullberg, Prostatacancerförbundet, Sweden
Europa Uomo / Did You Know? 01-2014 13
The year of 2013 was the year that we surpassed
almost every single target. Successful lobbying paired
with active media participation pushed prostate cancer
front and centre – making it a disease that more and
more people talk about.
1.Regional meetings and training sessions were held in
several cities during the spring.
2. The Annual Assembly was held in April. Most of the
Federation’s steering documents were revised and six
proposals were addressed – all during lively debate.
3. For the second time running the Federation carried
out a nationwide prostate cancer campaign involving
more than 160 activities (100 activities in 2012), most
of which took place in September.
4. We have received considerably more attention from
the media in the form of TV and radio coverage as well
as articles in many newspapers around the country.
5. We have been active in social media: Facebook (the
number of followers for the Swedish Prostate Cancer
Federation more than doubled in 2013), Instagram and
6. We started selling the Blue Band pin through the
pharmacy chain Apoteksgruppen and produced the
Blue Moustache pin.
7. The Federation created a brand new website that
has twice as many visitors.
8. The Foundation has received more revenue and can
allocate more. The Foundation has become better
known, resulting in more applications for research
grants and more scholarship applications.
The Swedish Prostate Cancer Federation is a
nationwide organization with 26 patient associations
that work to increase knowledge about prostate cancer
and provide support to men with prostate cancer and
their relatives. Moreover, the Federation lobbies for
better care, supports research and competence
development, and influences public opinion through its
At the start of 2013, the number of association
members totalled 8,228, growing to 8,823 members by
the end of 2013 – a 7% increase.
+46 70-552 73 15
If you want to know more about what we are doing you
can read our annual report from our website:
The Blue Moustache
Torsten Tullberg, Prostatacancerförbundet, Sweden
In 2013 SPCF designed a
new symbol, the Blue
Moustache, and an
Instagram account with
the same name was set
up. The Blue Moustache
is used to generate a
broader interest in
prostate cancer and is
used in collaborations to
people interested in men
– fashion – food – sports
while supporting the
fight to beat prostate cancer. During the year, an
agreement was signed with the Swedish Automobile
Sports Association to arrange fundraising during the
Safari Rally and the Stockholm-based race,
Midnattsolsloppet. In December, the Federation had a
rewarding collaboration with the restaurant Sturehof,
which sold Blue Moustache pins in its bars, and even
had lamb testicles on the menu – the profit from which
went to the Swedish Prostate Cancer Foundation.
Sturehof also helped us to arrange a Blue Moustache
launch party to which those closely affiliated with the
Federation were invited as well as the motorcycle club,
Piston Cult. Media coverage of the party was good and
it topped the list in Resumé’s online paper,
Sydsvenskan and GP.
Wearing stylish cycling outfits, Roberto Vacchi and
Rickard Herrey cycled 150 km in the Halvvättern bike
tour to bring in SEK 169,000. Rickard Herrey says it is
important to support the fight against prostate cancer.
This was the second year that Roberto Vacchi took the
initiative to complete the tour to raise money for the
Federation’s foundation. In addition to more money for
research, the event helped highlight the battle
against prostate cancer.
Europa Uomo / Did You Know? 01-2014 14
2010 2011 2012 2013 2014
No. of association members
New wonder drug for prostate cancer to “offer vital
lifeline” to thousands of men
Andrew Gregory, Mirror Online, May 9, 2014
Enzalutamide has been given the go-ahead for use by
the NHS, and could help save the lives of patients
suffering with prostate cancer.
A wonder drug for fighting prostate cancer has been
given the green light for use on the NHS.
The National Institute for Health and Care Excellence
said enzalutamide, also known as xtandi, should be
offered to men in whom the disease has spread to
other parts of the body.
Prostate cancer patients’ charity Tackle said: “This
offers a vital lifeline to thousands of men facing death
sentences due to the limited options for treatment if
chemotherapy has failed.”
Previous draft guidance sparked an outcry when Nice
said it should be recommended, but stipulated patients
could take it only if they had not previously used the
The condition was cut from the final guidance
document published today.
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Europa Uomo booth at the 29th
congress of the European Association of
Urology in Stockholm, April 11-15, 2014.