Newsletter Europa Uomo

1. EUROPA UOMO / Did You Know? N°1/2016 1
Europa Uomo’s new board as off the General Assembly, June 20-21, 2015:
At the occasion of the annual EAU congress in Munich last March 11-15, 2016, the board of Europa
Uomo had a successful meeting.
We thank the EAU for their hospitality and support.
Contents
p.1 Editorial
p.2 Chairman’s Letter
p.3 Sweden’s Astonishing Membership Success
p.5 Improving partnership to improve health outcomes
p.6 European Alliance for Personalised Medicine
Prof. M. Marberger: A Lifelong dedication to
Urology
p.7 News Flashes
p.8 The UK ranks almost last in Europe for cancer
survival rates
p.9 Standardizing Patient Outcomes Measurement
p.10 Active Surveillance for los risk prostate cancer
Blood test to avoid needless prostate surgery
p.11 Self-esteem in prostate cancer: empty nest
syndrome
p.12 Members events in 2015 and proposals for 2016
p.15 Initial report of the activities carried out by the new
LOCs between November 2015 and March 2016
Editorial
by Malcolm G. Duncan, the Newsletter Editor
I wish to start the Editorial Note on a positive note
informing our member associations of the
astonishing success of the Swedish association (PCF)
in achieving new membership which, in spite of a
fairly small population (less than 10 million) is now
composed of nearly 10.000 direct members and
another 11.000 indirect members or followers
through the co-operation of two Facebook groups,
and growth continues at an average annual rate of 5-
10%. On the contrary in several other countries there
is an ongoing fight for new members,
notwithstanding the dimensions of the problem and
future growth prospects. One of the main initiatives
planned by Europa Uomo Italy to increase
membership and establish other centres throughout
Italy is the organization of a national tour of a
specially equipped van (see the picture under the
column “Member Events”.
Did You Know? – N°1 – March 2016
The voice of prostate cancer patients across Europe

2. EUROPA UOMO / Did You Know? N°1/2016 2
The Swedish success is partly due to the existence of
26 local groups spread across the country, good
relations with the political and health authorities, and
probably to a fundamental cultural difference
between north and south Europe. It seems that
Scandinavian men are more inclined to open up and
speak about prostate cancer, at times encouraged by
their wives or partners. Whereas screening is taken
for granted by most women, it is something which
men have to struggle with before coming to a
decision.
Nevertheless mortality is still high in Sweden mainly
due to late diagnosis where the cancer has already
metastasized. In fact 2,000 of the average 2,400
annual deaths are mainly due to late discovery. Not
surprisingly early detection/screening is one of their
principal priorities.
Another success story is surely that of Tackle in the
UK which has established an ongoing contact with
the British TV, radio and press. This has surely led to
ever more frequent contacts with government
agencies on the development of standards and the
availability of drugs, especially for advanced prostate
cancer.
Other news came from Belgium, Portugal, which
expressed its gratitude to both Bayer and Janssen for
their co-operation, Slovakia and Spain. Besides the
normal helpline service of each national association
they organize and finance yearly one week cures in
Slovak SpA to encourage better social and health
conditions. Spain communicated the publication and
distribution of its Prostate Cancer Code to public
health care centres and the publication of its Prostate
Cancer booklet
We then have two articles of a psychological nature,
one written by the well known Italian psychologist,
Lara Bellardita, together with her assistant Julia
Menichetti, on the importance of also creating a
close relation with a psychologist in order to deal
with the stress which the word cancer tends to cause
and so become partners in navigating the illness
journey. Dr Bellaridta ends her article emphasizing
the important role of the media by increasing public
awareness.
Tania Estape who contributes to all issues stresses
the importance of self-esteem and ways and means
to achieve this goal.
In the column named “News Flashes”, we mention
initiatives to favour the internationalization of
medical research; a new test which could save
thousands of lives; an initiative by EMA to assure the
safety of drugs and medicines produced by the
pharmaceutical industry; a new two-drug
combination which should boost survival in patients
suffering from metastatic prostate cancer; and, last
but not least, the decision of the USA to shelf, at least
for the moment, the idea of abolishing PSA screening.
In a separate article The Times reports of a new
simple blood test , discovered and led by the
University of Copenhagen, which can identify low and
high risk prostate cancers and thus save patients
from unnecessary and risky surgery.
A brief mention was made of the third conference
organised by ESO in Milan of the role of Active
Surveillance.
Two reports, one by the OECD and the other by the
European Journal of Cancer, strongly criticize the
level of prostate cancer medical services in the UK
and of its very poor survival rates at European level.
Another article entitled “Standardizing Patient
Outcomes Measurement”, produced by the New
England Journal of Medicine, stresses the importance
of establishing internationally agreed standards
which will surely speed up measurement, share and
compare outcomes more efficiently and which will
accelerate international care improvements. ICHOM
has already convened several meetings on the
subject together with risk factors.
The Newsletter ends with the many activities and
conferences where Europa Uomo was represented by
the new Liaison Officers Club (LOCs), recently set up
and led by André Deschamps, one of our Deputy
Chairmen. In this manner Europa Uomo is able to
participate in far more initiatives dedicated to
Prostate Cancer than was possible with a small 7 man
Board. Our compliments go to the enthusiasm
already clearly discernible from the activities already
carried out by this new team.
The Chairman’s Letter
by Ken Mastris
Dear Colleagues and Friends,
As I write this short introductory letter addressed to “Did
You Know” readers, the first signs of approaching spring
can be discerned with pleasure, to begin with the
lengthening of daylight hours. March is also Prostate
Awareness celebration month in the United Kingdom and
the social media are busy promoting this Important annual
event.
First and foremost, I must thank all our members spread all
over Europe for their constant support and appraisal of

3. EUROPA UOMO / Did You Know? N°1/2016 3
Europa Uomo and I look forward to our annual assembly in
Hoorn (The Netherlands) next June to meet
representatives from all member associations.
We are in the midst of a difficult social and economic
period in which funding risks linger in the background and
we, like other voluntary patient groups, are making every
effort to assure our continual financial support by our
sponsors like EAU and ESO and others.
Our vision and mission are clear to us and much effort has
been put into finalizing our strategic priorities for the next
few difficult but promising years. Thanks to the Editorial
team manned by Malcolm Duncan and our website
coordinated by Nancy Verbrugghe, thanks to which our
members and the outside world are well aware of our
commitment to improve patient care in the whole of
Europe, and thus overcome inequalities of treatment and
our final and most ambitious objective: “A world in which
no man suffers or dies from prostate cancer”. This has
made us reflect seriously on the need to achieve closer
relations with other patient organisations intent on
improving health care in other common prostate diseases.
My most sincere appreciation goes to our Board as well as
to our newly appointed Liaison Officers’ Club directed by
André Deschamps, our deputy chairman. The Board can no
longer deal with all the efforts which improvements in
prostate cancer care demand.
My personal thanks also goes to Louis, Brigitte and Anja
who have greatly contributed to the success already
achieved by Europa Uomo since its inauguration in 2003.
Sincere best wishes to you all.
Sweden’s Astonishing Membership
Success
Calle Waller, vice chairman, PCF & Stig Lindahl, resp.
international affairs
In Sweden we recently passed a dream-line goal
regarding the number of registered members in the
Prostate Cancer Alliance (PCF). We are now a bit
more than 10.000. This must also be seen in an
international perspective, as our country has slightly
fewer than 10 million inhabitants and the average
dimensions of prostate cancer is around 95.000
patients. Another comparison is that the number of
patient members is now only slightly fewer than in
the corresponding organisation for breast cancer. On
the contrary in many other countries there is a fight
for members by many similar associations. Our
Newsletter editor therefore thought it might be
interesting to try to find an explanation of the
Swedish success story.
PCF was formally founded 10 years ago by a number
of local patient associations, some of which have now
celebrated their 20th anniversary. Today the country
is covered by 26 local associations of different sizes.
PCF is – similar to Europa Uomo - an umbrella
organisation with a yearly assembly, an elected Board
and an office with a staff of three persons.
Furthermore a quarterly journal is distributed to all
members, urologists and others and
information/communications is offered by internet,
www.prostatacancerforbundet.se with 120.000 visits
last year and
www.facebook.com/Prostatacancerförbundet-
225788517474143/timeline/?ref=hl with 11.000
followers.
The local associations are funded mainly by
membership fees and local subsidies. The national
level association is mainly financed by governmental
subsidies, collections from private persons,
companies and lotteries etc. This is utilized for our
operations and research fund. Some of our activities
are also co-funded by the pharmaceutical companies.
Originally our local associations were initiated
following discussions between doctors and patients,
feeling the need for peer-supporting activities for
those who recently just got the diagnosis and those
who had started their treatment. This is also still the
primary task for our local activities, i.e. to offer
personal support, information, and fellowship to
make it easier for the patient, his relatives and others
close to him to cope with the disease and its
consequences.
In order to fully understand this development you
have to go into a deeper analysis. First of all there is
probably a fundamental cultural difference between
north and south Europe, i.e. that is for some reason it
seems a bit easier for men in Scandinavia to open up
and talk about this disease. Certainly also Swedish
men experience the feeling that problems beneath
the belt are shameful, but the tendency leads to
more openness and social acceptance. This leads men
to dare to look for others with the same problems
and even to join and become active in an association.
Without any doubt when more men dare to be open-

4. EUROPA UOMO / Did You Know? N°1/2016 4
-minded, the easier it becomes to join prostate
cancer movements. Another important factor is the
involvement of those close to the patients: in fact
wives, girlfriends and partners play an important role
in allowing the men to be open and “frank“ about
prostate cancer. We have seen a number of times,
how the ladies push their husband/partner to get
more information about the cancer and do not take
no as an answer. Screening, that women take for
granted, is for the men something they have to
struggle with. The waiting time for prostate cancer is
3 times longer than the average waiting time for
cancer in general, and is a worrysome period where
the support of a partner is very important.
Another cultural condition is that Scandinavians are
used to making decisions based on dialogue and
general consensus rather than obeying orders from
above. The role of the doctors is to help us to cope
with our health problems rather than to give orders
on how to do it.
One important and long-term tendency is that the
health care system increasingly asks for patient
participation in discussions on how the care shall be
conducted and evaluated. After being rather
exceptional it is now more and more common that
our associations are involved in delivering patient
reported problems, shortcomings, imperfections and
suggestions of improvements in health care. This
happens both at national level as well as in the
activities of local clinics. But the role as Patient
Advocate gives us quite new priorities. It is no longer
enough to base ourselves on one’s own personal
experience of the disease and the health care
systems. Now we have to widen our perspective and
learn more about the situation from other patients,
about the disease all over the world and about the
different health care systems. For that reason PCF
has a new role in supporting the local associations
with strategies and training activities to raise the
competence among patient advocates on issues
relating to all stages of the disease, as well as about
the health care structure and governance etc. In
return we perceive a greater respect from the
professionals, a closer cooperation and a more
positive attitude to the patient movement – which in
turn is attuned to new patients. A new tool is being
developed, which is a knowledgeable package with
information about the disease and health care
systems, tips on coping strategies, contact
information to the association etc. It is referred to
more and more by the local associations. Thanks to a
rising patient competence we are becoming stronger
in negotiations with decision makers and politicians.
A great challenge is that people in common with
politicians and officials have a limited knowledge
about prostate cancer. One of the consequences of
this situation is that mortality is high in Sweden with
an annual average of about 2,400, almost 2 000 are
due to late detection, i.e. when the cancer has
already metastasized. In spite of this many people
regard the disease as fairly mild, compared to other
cancers. One goal of high priority for PCF is therefore
to work for an ever better dissemination of facts
about the disease to the public at large. It is a basic
task during the whole year but is intensified in a
limited period, usually up to September, the
international prostate cancer month, with the blue
ribbon as its symbol. A new approach is to switch
over to November-December, the Moustache-battle,
with widespread media activities, with well known
men as models, and a lot of local events. We perceive
a greater and more positive reaction to this, above all
in the younger generation. The moustache pin is also
more popular and generosity to charity is greater a
bit closer to Christmas.
The growing number of members is steady at
national level, between 5-10% yearly, from about 6
000 in year 2010 to more or less 10 000 today.
However, at local levels we find great variations from
one association which has declined by 25% to others
that have grown by more than 200%. Maybe, we can
learn something from this. There is an obvious
correlation to growth where the associations have
focused more on going public, offering informal
encounters and conferences for members and others,
as well as participated in different public meetings
where we have a very proactive approach to
politicians and officials in the caregiving
organisations.
To summarise, the development in Sweden is
explained partially by a favourable cultural climate,
partially by a high and rising level of local and
dedicated work targeted to a more intimate
cooperation with the different health care actors.
At national level the political work is actually
dominated by issues such as early
detection/screening, the health care organisations,
quality parameters in treatment, waiting times and
access to the new medicines.
SECRETARIAT Europa Uomo
Lange Gasthuisstraat 35-37, 2000 Antwerpen - Belgium
Tel: +32 3 338 91 51 - Fax: +32 3 338 91 52
europauomo@skynet.be - www.europa-uomo.org

5. EUROPA UOMO / Did You Know? N°1/2016 5
Improving partnership to improve
health outcomes
Lara Bellardita, Julia Menichetti
Project “For a shared understanding: men and
prostate cancer” 1
Prostate Cancer Program, Fondazione IRCCS Istituto
Nazionale dei Tumori, Milan
lara.bellardita@istitutotumori.mi.it
Prostate cancer: disease vs illness
The word prostate cancer (PCa) can evoke very
different meanings and scenarios in the actors that
are involved in the clinical consultation. For the
doctor, the word can refer to abnormalities of the
structure and function of body organs and systems
that he is called to restore. For the patient, the same
word can mean a strange feeling of powerlessness
and anxiety or something to fight. During the clinical
visit, the attention – both of patients and doctors – is
on the ill part of the body. The main expected work
of the doctor is to define the optimal treatment, and
the main one of the patient is to adhere to this
optimal treatment. However, this medical vision does
not reflect entirely what really happens during the
clinical consultation. Scholars and clinicians are more
and more recognizing that curing the disease is not
always only a medical matter. Indeed, what patients
feel and experience concerning their disease and the
relationship they establish with the disease can make
the difference in the disease course and substantially
change the clinical pathway. Patients might
consequently choose not to adhere to treatments, or
conversely can be highly engaged in health-
promoting behaviours and reduce the burden of the
disease. The question now is how can patients and
doctors become partners in navigating the illness
journey.
Navigating the PCa journey: coping with a shared
responsibility
Playing an active role in the healthcare journey starts
from day one for PCa patients and involves a number
of challenges and emotions, which highly request a
patient-centred attention. As mentioned before,
hearing the term cancer can lead to a state of crisis
for an individual and his family because most people
1
Acknoledgements to Foundation I. Monzino
are not immediately equipped to understand their
diagnosis or to identify options for moving forward.
Surely, few words rival cancer for pure emotional
impact: a cancer diagnosis is stressful because of the
substantial associated threats (e.g. survival,
happiness, well-being of family members). Distress,
anxiety and depression are common in men recently
diagnosed with PCa, and the psychological impact of
the diagnosis of PCa has been widely explored in
literature. Thus, first of all, patients need to cope
with the fact that they are ill. Most research has been
addressing how patients cope with cancer diagnoses
and the progression of the disease.
The challenge, however, does not end here. In fact,
contained within that generally stressful situation
there may be several emotion-laden decisions to be
made, most notably decisions regarding potential
treatment options (e.g., surgery vs. radiation, getting
adjuvant therapy or not, receiving treatment at a
university vs. a community hospital, even whether to
start treatment on a loved one’s birthday). Patients
need to come to terms with the fact that there are
several therapeutic options, and that they are being
asked to take an active role in decision-making,
weighing risks and benefits of different treatment
approaches in order to make that decision. Those
risks and benefits have to be weighed from their own
perspective and for the potential outcomes that are
relevant for them. Patients’ preferences, needs and
values are relevant. That means for patients that they
need to cope not only with the diagnosis and the
illness, but also with the request of sharing
responsibility for choices that concern their personal
future. This can be highly demanding for patients and
can easily lead to decisions based on trying to avoid
the emotions that are implied in the cancer
adjustment and decision making process itself rather
than based on their real priorities and preferences.
Indeed, decisions regarding cancer control are likely
to be among the most threatening decisions that
many individuals will ever make, and, as when
receiving a cancer diagnosis the normal ability to
make decisions and thinking clearly could be at least
initially impaired, some patients might need to take
the road with less emotional distress and ask for
advice. For example, a patient may avoid the stress
associated with confronting difficult trade-offs by
focusing on decision criteria such as a doctor’s
recommendation or the status of a particular
treatment as the “best established” or “most
technologically advanced”. Avoidance of thinking
about the diagnosis, the treatment choices to be
made and their consequences can however heighten
a negative psychological adjustment and lower mood

6. EUROPA UOMO / Did You Know? N°1/2016 6
and physical health. For patients to express their own
needs, fears, expectations, and preferences is
important in terms of health outcomes. Active
approaches to coping with PCa (e.g., problem-
focused, and emotion-focused coping) can help
patients to be healthier both psychologically and
physically, and can facilitate a return to pre-cancer
activities. Navigating the treatment choices and the
healthcare pathway can be difficult for patients and
can require patients to have an equipment of skills,
knowledge and internal and external resources that
can be difficult to have immediately after the shock
of the diagnosis. Evidence shows that these skills can
be learned and trained, even among patients who are
initially less willing, less capable or less literate.
Surely, reaching a shared responsibility over
threatening health choices and enabling patients to
play an active role in their care is not so easy and
requires patients, families and healthcare
professionals to contribute to a shared pathway of
discussion and dialogue that does not end once the
shock of the initial diagnosis wears off.
Being equipped to get on board
Ideally, patients are active and autonomous actors of
the care process, ask questions and give feedbacks,
are able to properly communicate with healthcare
professionals, and express their worries, preferences,
and opinions to clinicians. The advantages for
patients to have an active role in their care and to be
autonomous actors of health and well-being
trajectories can be huge, not only in terms of
improved satisfaction and better health outcomes,
but also in terms of reduced burden and costs for
healthcare systems. Nevertheless, “patients’ lack of
experience with the health care delivery system and
illness can impede their active participation”. In order
to properly manage and navigate the PCa journey,
patients need to actively cope both with cancer
diagnosis and decision-making trade-offs and need to
be properly equipped. This equipment can include
several tools. First of all, literature shows how
patients – and their families - need comprehensive
and understandable information available to them.
This facilitates cognitive processing of information,
which may lessen patient distress over time. So,
patients have to become PCa literate. Surely the
doctor is in the first line for giving this information,
but newspapers, television and web are also
important channels of information that patients use
to understand their health situation and all this
media should be aware of the responsibility they
have in educating patients. Men also need someone
to walk them through the decision process and the
care pathway, someone supportive and receptive to
their own needs. Healthcare professionals have a
unique challenge in this sense, but also friends, family
and peers are important.
To resume, becoming engaged in one’s care path is a
pivotal challenge needing collaborative efforts of all
care actors across the continuum of care. Both
physicians and patients have a key role, and
communication between them is crucial for an
effective partnership.
European Alliance for Personalised
Medicine
Extract from the EAPM Bulletin, Issue 11, January
2016
Details of the new General Data Protection
Regulation, which will ensure that valuable medical
data can be collected, stored and shared, were made
public late last year and Alliance made an important
contribution together with representatives of patient
associations, researchers, scientists and healthcare
professionals such as ESMO, EORTC, EPF, EHA, EAU,
Science Europe and Wellcome Trust. This led to
around 4,000 amendments to the original draft. This
was followed by numerous meetings with MEPs on
critical points.
A conference entitled “Making Access to Personalised
Medicine a Reality for Patients” addressed obstacles
to the integration of personalized medicine in EU
Health-Care Systems, identified best practices and
their added value, and outlined the potential benefits
of personalized medicine for public health and its
impact on policy-making in the EU.
The Americans are moving quickly and have come to
some obvious conclusions including that health
equals wealth. That investment in research and
innovation, alongside laws and rules that are fit for
the purpose, reflect the swiftly changing world of
medicine, and are therefore vital.
Prof. M. Marberger: A Lifelong
dedication to Urology
Selbsthilfe Prostatakrebs is most
happy to see that our honorary
member, Prof. Michael Marberger
is now well again after a CVA in
April 2014 while he was attending
EAU's annual congress in
Stockholm. At the event recently organised in his
honour by the Medical University, we were happy to
avail ourselves of this occasion presenting him with

7. EUROPA UOMO / Did You Know? N°1/2016 7
an honorary membership certificate of Selbsthilfe
Prostatakrebs Austria.
NEWS FLASHES
A Great Step Forward in the Internationalization
of Medical Research
By Malcolm Duncan
A great new initiative devised by ASCO DIRECT LINE
and supported by Janssen will be inaugurated at the
2016 Genitourinary Cancer Symposium which will
shortly be held in San Francisco, USA.
It will enable European clinicians in six different
countries (Austria, Belgium, Germany, the
Netherlands, Switzerland and the United Arab
Emirates) to assist directly at the American
symposium, thanks to video-broadcasts of data,
presentations and real time connections with experts
onsite. That is without the need to travel to the
American symposium.
This important communications innovation aims to
stimulate greater learning and co-operation amongst
international clinicians. We trust this will ultimately
lead to improved medical results and the quality of
life for genitourinary cancer patients across EMEA
(European Agency for the Evaluation of Medical
Products).
Expensive new drugs may be offered to NHS
patients during trial periods
The Guardian reports that the NHS (the British
National Health Service) has recently decided that
new cancer drugs which show promise, but are
considered as too expensive for NHS coverage, may
be made available for patients for two years to gain
data on their effective value. The proposal is an
attempt to solve a thorny ethical and political issue
which has provoked damaging headlines for the
British government for many years. NICE (the
National Institute for Health and Care Excellence)
wants to be able to assess that the new drugs are
sufficiently cost-effective for NHS use. In fact many
new drugs are launched with price tags that exceed
Nice ceilings £30/50,000 in the case of end-of-life
drugs.
In 2011 a Cancer Drug Fund was launched by David
Cameron amounting to £200m a year to finance
drugs rejected by NICE on cost grounds. However this
sum has been notably exceeded each year up to as
much as £340m, so in future it will come under the
auspices of NICE which will evaluate the true value
and cost of each drug This is a first step in the need
for Health reform but a lot still remains in order to
catch up on the rest of Western Europe in the field of
cancer care.
The Test that could save thousands from
aggressive Prostate Cancer
The Telegraph reports that researchers at
Nottingham Trent University have recently
discovered that proteins PMI and CRM-1 play a
crucial role in allowing the disease to grow rapidly
and in Britain alone lead to as many as 10,000 deaths
per year. Consequently, scientists can now discover
who is likely to suffer from aggressive cancer and so
achieve earlier treatment and care. They hope that
thanks to this forewarning they can find a way of
preventing the two proteins from triggering the lethal
spread. This discovery may reassure most of the
average 42,000 British men who annually are
diagnosed as having Prostate Cancer which is the
most common cancer for English men and kills one in
four. It is however urgent to identify new diagnostic
and prognostic biomarkers for the prompt
identification and treatment of such patients.
However, fortunately, many prostate cancers denote
very slow growth and are best left alone.
PSA TESTS SURVIVE IN THE UNITED STATES OF
AMERICA
The American medical and political authorities
appear to have had second thoughts on the idea of
abolishing PSA screening tests at least for the
immediate future.
A new two-drug combination boosts survival in
metastatic prostate cancer
CancerConnect News has given new hope to patients
suffering from newly diagnosed metastatic hormone-
sensitive prostate cancer. According to the New
England Journal of Medicine and a report by Dr
Christopher J. Sweeney of the Dana-Farber’s Center
(USA), the new treatment, which had first been
tested on 790 patients, was perceived as most
successful. A combination of two drugs dramatically
notably increased survival benefits. Patients who
underwent 6 cycles of the chemotherapy drug
docetaxel along with a hormone-blocker survived for
a medium of 57.6 months, more than a year longer
than patients who were treated simply with the
hormone-blocker. A treatment which previously had
been applied for decades.

8. EUROPA UOMO / Did You Know? N°1/2016 8
Medicine Smuggling
A leading Italian daily “Il Giornale” reported in
January of this year that the enormous difference
between medicine prices in Italy and France,
sometimes as much as 50%, has led to a very
lucrative smuggling of medicines between Nice and
Milan. For example, a packet of Aspirins costs 16
Euros in Italy and only 8 Euros in France. The
automatic question is what is the motive for such a
price difference which renders the Italian health
system more expensive than probably necessary.
According to an OECD report the UK ranks
poorly in medical services
Report Summary by Malcolm Duncan
Notwithstanding the opinion recently expressed by a
Department of Health spokesman who said that they
are making every effort to make the NMS the safest
Health Care system in the world and have recently
invested £10 billion for that purpose, the OECD
report, while admitting that in some areas British
health care is the envy of the world, all in all, while
access is generally good, it continues to have what is
considered the worst health care system in the
developed world. The study covered 34 countries and
the explanation given was limited investment. It is
estimated that they need about 75,000 additional
doctors and nurses.
Hospitals are so short staffed and under-equipped
that people are dying needlessly. While the OECD
average number of nurses and doctors is respectively
9.1 and 3.1 per 1,000 population, the figures for the
UK are respectively 8.2 and 2.8. The UK also does not
excel at delivering high-quality acute care either and
staff are too rushed to improve levels of care. Mark
Pearson, OECD Deputy Director for Employment,
Labour and Social Affairs confirmed this opinion.
While heart attack survivals are improving, the UK is
ranked 20th
out of 32 countries on heart attack
deaths. It is still lagging behind the top performers on
survival rates following the diagnosis of different
types of cancer: 21st
out of 23 countries on cervical
cancer survival, 20th out of 23 on breast and bowel
survival and 19th
out of 31 countries on stroke
survival.
Mark Pearson admitted that the UK was doing very
poorly in preventing ill health by tacking issues like
obesity. The OECD called for urgent attention to
combat high levels of smoking and also the high level
of drinking alcoholics.
Nigel Edwards, Chief Executive of the Nuttfield Trust
think tank complimented the junior doctors for their
efforts as, he said, they are the backbone of hospital
workforces, in an attempt to dissuade them from
taking trade union action following a recently agreed
11% pay rise and a curb on unsociable working hours.
However the OECD report complimented the UK
health system regarding waiting times for hip and
knee replacements and for vaccinations. On the
contrary it is bottom of the list for survival from
colorectal, breast and cervical cancers, though some
improvement had been fortunately noted.
The UK ranks almost last in Europe for
cancer survival rates
Summary prepared by Malcolm Duncan
According to a recent report published by the
European Journal of Cancer, which covered 29
European countries and over 20 million cancer
patients, the UK has the worst survival rates for
cancer in western Europe.(see tables below), and
while all other countries had shown improvement
since the previous study in 2007, possibly favoured
by two new drugs to fight liver cancer and
cabozantinib which blocks enzymes which drive
tumour growth and slowed disease progression
twice as long as standard treatment. Unfortunately
this was not the case for the UK which showed little
or no change. Survival rates in Sweden were almost
a third higher than in the UK. Only patients in
Eastern Europe and the Balkan states fared worse.
One of the major UK problems is the poor rates of
early diagnosis with an average of one out of 5
cancers not being discovered until the patient arrives
at Accident & Emergency hospital departments. In
other countries testing was offered much earlier. This
opinion was shared by a leading researcher Dr.
Milena Sant who also said that this naturally reflected
on survival rates.

9. EUROPA UOMO / Did You Know? N°1/2016 9
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The reasons for this regrettable situation is the
limited awareness of people of the signs and
symptoms so that cancer can be diagnosed earlier by
GPs and therefore treated more effectively. Recently
the British Health Secretary announced that as from
2020 patients suspected to have a cancer will be
given a diagnosis or an all-clear reassurance within a
month.
Powered by Factmint
A detailed examination of the above report shows
that average 5 year survival rates in the UK were
calculated at 50.2% compared to 64.7% in Sweden. In
fact France, Italy and Germany all did far better
whereas the UK was on par with the Czech Republic.
In the case of prostate cancer the five year survival
rates of England, Scotland and Wales were
respectively 80.3%, 78.8% and 78%, compared to
90.2% in Austria, 90% in Finland and a European
average of 83.4%.
Standardizing Patient Outcomes
Measurement
An extract from the New England Journal of Medicine
2016 (374: 504-506)
Dear Ladies, Gentlemen and Colleagues,
I have asked our editor to include an extract of the
above report in the next number of our international
Newsletter, and advise you to then read the full
version. Prostate Cancer is one of those 12 diseases
for which standard sets have already been
developed.
Gunter Feick, BPS Chairman
From the arc of history it is increasingly clear that
evaluating health care is slowly shifting its focus from
the volume of services to the value created for
patients. Experience in other fields suggests that
systematic outcomes measurement is the sine qua
non of value improvement. In fact the lack of
outcomes measurement has often slowed down
reimbursement reform and led to hesitancy among
health providers to embrace accountability for
results. This therefore requires a means to set
standards, both nationally and globally to enable the
measurement and comparison of health outcomes.
Efforts on outcome measurements are overwhelming
concentrated on the clinical status (e.g. survival and
objective outcomes which are easily identified by
laboratory tests) but require long follow-up periods
for meaningful evaluation of treatment results.
Though Patient-reported outcomes are beginning to
be measured, they are not yet routinely captured for
most conditions. Consequently each organization
that sets out to measure outcomes has an arduous
task in agreeing what to measure and how.
The time has come to change this trajectory.
Providers, payers, patient advocacy groups and
regulators must co-operate in order to create a
minimum set of outcomes for each important

10. EUROPA UOMO / Did You Know? N°1/2016 10
medical condition. Agreed standards will surely speed
up measurement, share and compare outcomes
more efficiently. This will accelerate care
improvements.
The International Consortium for Health Outcomes
Measurement (ICHOM) has already convened
meetings of experts together with patient
representatives to outline minimum standard
outcomes and risk factors. ICHOM has already
established or is in the final stages of approving more
than 21 sets covering about 45% of the disease
burden of the United States of America and of other
high-income countries. As the adoption of these sets
has proved rapid, the indispensable tools and
methods are being implemented including high
technology software in order to automate outcomes
data collection and aggregation. Though universal
measurements and reporting of outcomes will not
happen overnight, they believe that implementing
standard sets of outcomes is a decisive step in the
right direction.
www.europa-uomo.org
Active Surveillance for low risk
Prostate Cancer
ESO (European School of Oncology) organized its 3rd
conference on the above subject in the IRCCS Istituto
Nazionale dei Tumori of Milan on 12th and 13th
February. The meeting was co-sponsored by EAU and
the Europa Uomo patient group. In another article in
the present issue we have discussed the need for
urgent intervention for high risk prostate cancer
whereas, in the case of low risk PC, it is a question of
wait and see, as there is otherwise a danger of over-
treatment and over-diagnoses. PSA or MRI
monitoring was advised by speakers whereas
repeated and unnecessary biopsies were strongly
cautioned, as they can cause harm, pain and even
infection. In fact patients suffering from low risk
prostate cancer frequently eventually die for other
causes. There is now a much reduced number of
deaths from prostate cancer, estimated at about
2.5%, and this notable improvement in the care of
prostate cancer has so far proved detrimental to
Europa Uomo’s request for public financing in spite of
two encounters with MEPs (Members of the
European Parliament). See Movember GAP database
for further PC details.
Faculty: C. Bangma (NL), L. Bellardita (IT), L. Bokhorst
(NL), A. Briganti (IT), S.M. Bruinsma (NL), S. Carlsson
(SE), P.R. Carroll (US), L.J. Denis (BE), J. Humblet (BE),
J. Hugosson (SE), G. Jenster (NL), L.H. Klotz (CA), I.
Korfage (NL), A. Lane (UK), C. Moore (UK), A. Ouzzane
(FR), T. Pickles (CA), A. Ranniko (FI), M.J. Roobol (NL),
I. Schoots (NL), A. Semjonow (DE), E. Steyerberg (NL),
K. Touijer (US), B.J. Trock (US), R. Valdagni (IT), H. Van
Poppel (BE), L. Venderbos (NL), J. Walz (FR).
See the European School of Oncology website for
copies of the programmes and all conference speaker
slides. If in difficulty please refer to Rita De Martini
(prostate@eso.net).
Blood tests to avoid needless
prostate surgery
Oliver Mood, Science Correspondent, The Times
A simple blood test could spare thousands of
prostate cancer patients from unnecessary and risky
surgery.
Prostate cancer is the most common cancer in British
men, with more than 25.000 new cases of the disease
and 10.000 deaths every year.
More than four out of five malign prostate tumours
are graded as “low risk”, but each year several
thousand men with these cancers opt to have the
gland cut out in an operation that carries a significant
risk of infertility, impotence or incontinence. Fewer
than one in ten of these procedures is thought to be
necessary, but it is very difficult to work out which
patients would die if they were not treated.
Cancer researchers, led by the University of
Copenhagen, have discovered a chemical that marks

11. EUROPA UOMO / Did You Know? N°1/2016 11
which low-grade prostate tumours are likely to carry
a significant risk of death if the gland is not removed.
The scientists looked at the proteins in 28 samples of
cancerous prostate tissue and noticed that one of
these complex strings, known as pro-neuropeptide Y
(pro-NPY) appears at much higher levels in aggressive
tumours.
When they measured the protein in biopsies from750
Scandinavian men with “low-grade” prostate cancer,
they found that those with high levels were more
than twice as likely to die from the disease.
Amilcar Flores Morales, professor of molecular
disease biology at Copenhagen, said this suggested
that proNPY was a “biomarker” that doctors could
use to pick out the minority of patients who would
benefit from the prostate surgery. Because pro-NPY
also circulates in the bloodstream, Professor Flores
Morales believes his team could use it to develop a
simple blood test to gauge the patient’s situation.
Self-esteem in prostate cancer:
empty nest syndrome
Tania Estapé
We often speak about women suffering from an
empty nest
syndrome. This
is a time of life
when grown
and
independent
children do not
need them as
much. This can
lead to
depressive
tendencies. It is
a moment of
reflection which changes the meaning of life. This
may impact on self-esteem as the most common
feeling is "I am no longer useful," "I no longer good at
anything", "nobody needs me."
But we argue that there is an empty nest in every
man and also the occurrence of prostate cancer may
contribute to aggravate it. This is largely due to the
average age at which prostate cancer occurs. Many
men find a coincidence between this and a change in
their life cycle. In psychology we consider more
appropriate to speak of the life cycle at that age,
because it is accompanied by certain events that
characterize it, but it does not always agree with
exact chronological ages. If we are talking about
many men who are close to retirement or recently
retired from work. For men traditionally work is a
very important period for personal fulfilment. So
much so that many identify themselves according to
their professional activity, and later retired some still
do (“I was an accountant of Company X", or "some
other executive" ... ..). This is of importance from the
psychological point of view because they are people
whose personal identity was forged by that
profession or job that defines them and they may
sometimes fall into a deep depression, and suffer
from a lack of motivation in their life. As happens in
women, men also feel that their children are getting
older and have even begun to become independent.
All this provides a blow to their self-esteem and
increases the feeling of "futility" and the realization
that they are getting older. This process which may
be more or less normal is aggravated when it
coincides with the diagnosis and treatment of
prostate cancer. When treatment affects erectile
capacity and even urinary incontinence, we are
dealing with items that affect the quality of life, but
above all the feeling of masculinity is profoundly
affected. It definitely is part of self-esteem. Other
cancers have the same effect on physical and
functional aspects but in this case the location of the
tumour has an added impact on the crisis of the man.
Self-esteem is a key element in the psychological
health of the person and its definition says “it is how
a person evaluates himself or herself with respect to
their capabilities”. It is important to understand that
self-esteem does not mean you think you are
superior or better than others, but is a way of relating
oneself to others and which makes you feel good
about who you are and respect your own feelings and
decisions. This self-esteem may be fragile in some
moments of life and that is what we are considering.
One has more or less self-esteem also in terms of the
areas that we consider as important and from which
we are self assessed. Therefore, in men with prostate
cancer a series of events are added to the empty nest
feelings. These are problems that make you feel "less
of a man" (if you suffer from impotence and
understand that your sexuality is finished, especially
if your vision focuses on intercourse) and "less
autonomous" (if you suffer from incontinence and
feel less free in your daily lives).
It is important to preserve self esteem but sometimes
the facts of our life deeply damage it. Poor self-
esteem is the prelude to depression, which we
discussed in a previous article. A feature of
depressive disorders is precisely the decline in self-

12. EUROPA UOMO / Did You Know? N°1/2016 12
esteem. The individual feels useless, a burden to
others and little operative and interesting, and
becomes less sure and has little trust in his own
impressions. He has negative thoughts about himself,
the world around him and the future and internal
dialogue is related to this. He may feel a failure and
lose the sense of his life because things that
motivated him are now missing.
It is therefore important to consider some points to
try to preserve self esteem in men who are in this
empty nest cycle and suffer from prostate cancer:
- Try to have interests beyond work or working life:
although this is not always easy, it is never too late.
We must find hobbies, relationships or old forms of
entertainment we used to do that can fill the void left
by working life and that makes men feel self-realized
and may even have satisfaction for the "job" well
done (winning in competitions, doing well in some
craft, achieve a DIY task, going on the trip that could
not be done before due to a lack of time ....).
- Have family support: it is true that children no
longer need your advice so much but you may be
able to recover some relationship. We must let them
know that they are still important and that you are
still there if needed, but it is important to try not to
rely on that relationship, to break the dynamics of
the empty nest. You may be valuable as an individual
apart from others’ needs.
- Enjoying life together: perhaps the time of
retirement is a good time to do activities that you did
not do before with your life mate. If we are suffering
from the "empty nest" phenomenon this can be
changed to something attractive, since once again
the couple can enjoy themselves without the children
in the middle. Sexuality can change but does not have
to disappear altogether. It can be used to search for
nearness and sensuality with more time to be relaxed
together. We will talk further about this aspect in
another article.
- Incontinence can cause you to stop doing certain
activities that were previously done and enjoyed. It is
certainly an annoying effect that can undermine
personal autonomy. You have to plan leisure
activities and family activities based on this. it can be
very important to exercise control if only to feel you
are regaining control and this improves the self-
esteem of the person. It may be important to help it
by making records in a graph or chart. It is true that
incontinence has a physical cause but there is a
degree of anxiety that influences and sometimes just
knowing that you cannot urinate for a while or not
having certainty on where you can makes it still
harder. Therefore make a kind of graph which will
help you also see when was your last visit to the
bathroom and is the urgency you feel really natural
or does it respond to some anxiety. In addition, it
may be important to know and accept that this is
happening, not deny it and if possible, find
information about how many possibilities there will
be to go to the bathroom.
- It is very important you don’t identify yourself with
your problem. You are not incontinence or
impotence. You are a person with incontinence and
impotence therefore not to be identified with these
problems. On the contrary try to preserve the most
of your self-esteem. You are still X years old, and
called Tom or James or whatever other name, and
who likes reading, climbing mountains or travelling,
married with children, with hobbies, personal tastes,
feelings and emotions and that's how you should
define yourself. Labelling yourself mentally and in
capital letters: IMPOTENT, INCONTINENT ...
PROSTATIC ... is something you must try to avoid.
Otherwise this will lead you to define yourself as
someone who is finished, worthless or ashamed.
Whereas if the incontinence and impotence are
obviously problems you are having, your identity can
still be intact. The nest may be empty but not you..
As we always say there are psychooncology
professionals who can help you individually, in pairs
(couple therapy) or in groups in order to be able to
recover a satisfying way of life on the basis of the
problems that cancer and its treatment have caused
in your life. Personal identity and self-esteem may be
temporarily depleted but may be recovered, however
you may still need to seek for help in order to see
things differently.
Members events in 2015 and
proposals for 2016

13. EUROPA UOMO / Did You Know? N°1/2016 13
BELGIUM
Wij Ook (US TOO) Belgium had 6 Board meetings, one
general assembly and eight meetings of the journal
PROSTAATinfo committee.
We edited 4 trimestriel publications and organised
four Café Santé meetings in Antwerp and two in
Ghent.
Co-organised with UZ Brussels our annual European
Prostate Patient Day 19.09.2015 and our Walk
against Cancer in Antwerp on 13.06.2015.
Next to our open office and cancer patient library we
are available for consultations on care problems and
referrals to treating centres.
Internationally we were involved in EPAD 2015, nurse
training symposia and pharma events from Ipsen,
Astellas and Janssen on prostate cancer education.
We support OCA in return for compensation to Mrs.
Anja Vancauwenbergh, acting secretary of Europa
Uomo.
ITALY
Europa Uomo Italy co-sponsored 5 conferences in
various cities during the course of the year, the most
original one was the photographic competition in the
Milian Stock Exchange building to sensitize the public
on the need for an early diagnosis of prostate cancer.
The election of a new chairman of the Scientific
Committee, Dr Claudio Verusio, led to its more active
participation to the benefit of Europa Uomo. The
annual yearbook was published in June and put on
our website. Some 145,000 articles have been
downloaded since its inauguration in 2013. The
regular meetings of the Milan Patients’ Group, co-
ordinated by a psychologist, continued and now we
are attempting to create other similar centres
throughout Italy, also thanks to the recent creation of
MultiDisciplinary Centres all over Italy. Thanks to
Bayer Italy an article on Europa Uomo, its objectives
and activities was included in their periodical “Sapere
e Salute” which was distributed in 2,549 Italian
chemists. The booklet on Prostate Cancer was
updated and republished by the Istituto Nazionale dei
Tumori of Milan and promptly put on our website
www.europauomo.it.
One of the principal initiatives proposed for 2016 is a
tour of many Italian cities of a well equipped van in
order to spread knowledge on prostate cancer and
achieve a better national distribution of our
membership which is most important due to the
geographical shape of the nation. Lastly, Europa
Uomo Italy continues to manage the issue of the
quarterly international newsletter “Did You Know?”
distributed throughout Europe through Internet.
PORTUGAL
Thanks to Bayer Portugal, articles where APDProstata
(Portugal) is mentioned, its objectives and activities
were included in important magazines and
newspapers.
We also participated in actions organized by Janssen
(flash mob at Colombo Shopping Center, Lisbon);
Sanofi (internal session dedicated to all employees);
Bayer (public replica of old barber shop with direct
reference to our Association); participation at the
public launching of a new book – All you always
wished to know about prostate – written by a well
known local urologist.
A great effort and time was also concentrated on the
change to a new office, new by-laws and other
related time consuming tasks (Finance State Depts.,
Social Security Authority and similar).
For 2016, we will continue to concentrate on public
sessions to keep our target alive, presence on TV,
Press and Radio, and re-launch our website and
Facebook presence.
SLOVAK REPUBLIC
Europa UOMO Slovakia (EUS) was founded in 2006 as
a civil association of patients with CAP and top Slovak
urologists from the Slovak Association of Urologist
(SAU) including Prof. Kliment, Dr. & Assoc. Prof.
Goncalves, Prof. Breza, Prof. Valansky, Prof. Hornak
and others.
The EUS organization has three centers in the main
regions in Slovakia: Bratislava - Prof. Koprda, Martin -
Prof. Kliment and Košice - Prof. Blazek. Gradually we
created some local patient groups.
A very well centrally patient association League
Against Cancer, LAC co-operates closely with EUS
(legal, social and psychological counselling, plus club
activities). But LAC has predominantly a female
membership. Patient organizations (especially so in a
sensitive area such as CAP) do not have a tradition of
Slovakian men. The situation is improving slowly,
especially following promotional activities by our
members.
Slovakian patients and all candidates therefore have
the opportunity to see the excellent websites in their
native language.
For example, at
www.rakovinaprostaty.sk/pacienti/sekcia-sk-28-
Poradna-30-Odpovede (this is the prostate cancer –
patients‘ website). There is an excellent clinic led by
Professor Kliment - head of the second center E-
UOMO Slovakia.

14. EUROPA UOMO / Did You Know? N°1/2016 14
Other quality websites are for example
www.zdravaprostata.sk, www.mojaprostata.sk,
www.pluska.sk/izdravie/wiki/prostata.html.
Our website E-UOMO Slovakia is:
www.europaumo.sk.
Finally, the website of the central Slovak Organisation
League Against Cancer: www.lpr.sk.
2015:
The patients in our centers and clubs meet once or
twice a year.
They exchange experiences with one another, a
reputable urologist is always available, and they are
informed of the European activities of E-UOMO as a
whole. It is presented in the Slovakian magazine DYK.
Patients also receive copies of the Polish magazine
Gladiator. Each new member receives a book about
the CAP, diagnosis and treatment methods. This book
was produced by Prof. Kliment with a significant
support of our EUS.
The EUS GA took place in Martin town. It was
attended by patients and doctors of all Slovak EUS
centers which regularly attend and inform us on the
activities of their organizations. Representatives from
Austria (Ekke Buchler) and from Poland (from
Gladiator –Tadeus Wlodarczik) also attend.
We have a permanent help-service for our members
by means of a telephone link in Bratislava (run by our
member Prof. Hornak, which covers all Slovakia, via
LAC -free of charge), a website with Q and A
managed by Prof. Kliment - in Martin and an email in
Kosice ( run by Prof. Blazek, Prof. Valansky). All for
the whole of Slovakia.
We organize and pay for three members every year
for a one week cure in Slovak Spa for better social
and health conditions. In 2015 it was held in Nimnica
Spa.
In September, the EUS connects to the AUS for the
urological week.
In the present term of the Secretariat EUOMO
Brussels, we publicized EPAD in Slovakia by sending
letters to editors of media, our booklets and the like.
At the beginning of 2016, each EUS member received
a letter from the chairman, Prof. Koprda, with a
report on all activities for the year 2015.
In 2016:
The EUS GA will be held in Bratislava on 03/18/2016.
It will be a solemn meeting with a number of
honourable guests of LAC, SAU as well as EUOMO
guests from Austria and Poland.
Our standard activities will be held in our EUS
centers.
We will continue to work to inform the public (our
website, emails, phone and booklets).
We update them on your web-site, give them
translations of the content and of the editorial of
DYK.
We will make every effort to activate the
membership base and to acquire new members from
among Slovakian patients.
SPAIN
Europa Uomo Spain is working hard on prostate
cancer. Our support groups are going on with the
presence of an Oncologist and a Psycho-oncologist.
We have renewed our web site (main and specific
webs, being one of them prostate cancer web:
www.cancerdeprostata.org). It includes a
psychological assessment and a sexuality area. We
have distributed our Prostate Cancer code to public
and health care centres and our Prostate cancer
booklet (translated from the American Cancer
Society). We have a program on medical and
psychological advice. We offer individual and couple
therapy and also we have a helpline to help
individuals and their relatives by phone. We
collaborate in the Did You Know newsletter with the
psycho-oncology corner article.
We have participated in Bayer meeting and
assessment on their work on pain results. We have
presented a poster in the Washington International
Congress of Psycho-oncology (August 2015) on our
results about 278 men with prostate cancer (anxiety,
depression and problems related with illness).
For 2016 our goals in prostate cancer are to go on our
group and try to wide it to other cities under our
assessment. Also we are participating in assessing
Bayer in writing a leaflet to distribute among patients
to help them to improve their communication with
doctors. Also we have been invited to some public
education activities on prostate cancer (our lecture is
on medical and psychosocial aspects of prostate
cancer). Our help line by phone will be included in a
global line of the Psychologists Association of
Barcelona that offers helpline for other health
problems. We will go on our current activities.
UNITED KINGDOM
Tackle Prostate Cancer had a successful year in 2015,
seeing the culmination of a 3-year plan to establish
the charity as the voice of prostate cancer in the UK,
led by our chief executive, Rowena Bartlett. “Tackle”,
as the public brand of what is the National Federation
of Prostate Cancer Support Groups, has been active
on all three fronts of its strategy, namely encouraging
and assisting in the formation of patient led support

15. EUROPA UOMO / Did You Know? N°1/2016 15
groups, raising awareness of prostate cancer in the
general population and encouraging the
improvement of health services by campaigning.
By the end of the year we had some 80 support
groups within the organization, now organized within
a regional structure with the sharing of best practice,
helping other groups to get established and offering
counselling and advice to those newly diagnosed. We
have improved our governance and have become
fully incorporated as a charitable company.
On the awareness front, we have established a new
national helpline, redesigned our website at
www.tackleprostate.org and prepared awareness
packs for groups. We encouraged wider PSA testing
through various initiatives in the fishing and rugby
communities which are bearing fruit with our
campaign to encourage men to know their PSA or to
“get a score on the board”.
Perhaps the area of greatest impact has been the
active campaigning we were involved in. 2015 saw
numerous media appearances on TV and radio,
articles and mentions in national newspapers. We are
now regularly asked by governmental agencies for
our view on emerging guidance, the development of
standards and the availability of drugs, particularly
for advanced prostate cancer.
This last point is one we continue to try and
influence, and will do so in 2016 as a new model for
making sure emerging drugs become available to
patients. Our efforts will also continue on growing
our organization to cover those areas of the UK not
served by a support group. We will continue to raise
awareness of the importance of early detection and
campaign for improved treatments, with a special
focus on bone health. We expect to play our role in
helping Europa Uomo achieve its aims in the wider
arena.
Initial Report of the activities
carried out by the new Liaison
Officers (LOCs) between November
2015 and March 2016
Erik Briers [PI – personal invitation]
Celebration Emeritus Prof. H. Van Poppel (Leuven,
21.11.15)
Participation at the conference in honour of Prof. H.
Van Poppel (Leuven 20-21 November 2015)
EAU Guidelines Committee meeting 18-19 December
2015 [PI]
BBMRI-ERIC Belgian node [BioBank European
collaboration] on future collaboration [PI] (23
December 2015)
ESR-PAG [European Society of Radiology – Patient
Advisory Group] on future activities [PI] (14 January
2016)
Prostate Cancer meeting Brussels participation with
André Deschamps Brussels (26 January 2016)
JACD [Berlin] [Janssen Pharmaceutical Companies]
Meeting in Berlin invited to be part of a panel to
speak on patient cancer journeys [PI] (27 January
2016)
REQUITE [ethics committee] [Validating Predictive
Models and Biomarkers of Radiotherapy Toxicity to
reduce side-effects and Improve Quality of Life in
Cancer Survivora] TelCon on communication and
dissemination [PI] (1 February 2016)
EMA [European Medicines Agency] Conference on
EudraVigilance and a new project for patient
reported side effects (19 February 2016)
Bayer [Berlin] Invitation to speak to research
managers in pre-clinical research on my cancer
journey and patient involvement in new medicines
development [PI] (1 March 2016)
IEEPO 2016 Copenhagen (International Experience
Exchange for Patient Organisations) invited to speak
on patient involvement in the regulatory process [PI]
(2 March 2016)
European Conference on Radiology Vienna 2016 [PI]
3 March Invited speaker on : Radiation risk: a
patient’s perspective
4 March invited speaker on: Patient’s expectations in
communication with radiologists
5 March invited speaker: ESR-PAG session on Patient-
centred care on: view of a patient with prostate
cancer
5 March invited speaker: ESR-PAG session on Data-
sharing for better patient outcomes on: view of a
patient with prostate cancer
6 March meeting of the ESR Patient Advisory Group
EAU Guidelines Committee TelCon 10 March 2016
[PI]
Louis Denis
Celebration Emeritus Prof. H. Van Poppel (Leuven,
21.11.15)
Representation Extra Ordinary General Assembly
ECPC (Brussels, 27.11.2015)
XtandiTM
Launch Symposium on new treatments
(Antwerp, 03.12.15)
Terminate NCI contract Liaison Office Brussels
(20.01.2016)
Urobel 10 year Nursing (Leuven, 06.02.2016)
Guiding Amgen grant 2016 (10.02.2016)

16. EUROPA UOMO / Did You Know? N°1/2016 16
Precise role of MRI (Milan, 11.02.2016)
Honorary Chair 3rd ESO Conference on Active
Surveillance (Milan, 12.02.2016)
Preparing Europa Uomo working schedule EAU
Munich (11.03.2016
Maria Luisa & Joaquim Domingos
Prepare and dispatch to Vienna the booth materials.
Ekkehard Büchler organized the booth and
represented Europa Uomo at The European Cancer
Congress 2015 - Vienna, 25-29 Sep 2015
Prepare and dispatch to Milan the booth materials
(roll-ups). Malcolm Duncan organized the space
available and represented Europa Uomo at the 3rd
Conference on Active Surveillance for Low Risk
Prostate Cancer (12-13 February 2016 – Milan
We will now prepare the Europa Uomo booth for the
EAU Munich EAU congress, March 10-15, 2016
Brigitte Dourcy-Belle-Rose
Secretariat US TOO Belgium
Celebration/organisation Prof. Van Poppel
Urobel 10 year Nursing (Leuven, 06.02.2016)
Column in Prostate Info editions December & March
Substitute Secretariat Europa Uomo
Paul Enders
As a member of the advisory board of the PREFERE-
study I was involved in measures to improve the
recruitment of patients.
PREFERE is an important study in Germany where
four options of treatment for low risk prostate cancer
are being compared.
Will Jansen
Organising contributor members of the PKS, which
was held in November 2015 in de Reehorst in Ede,
NL. Which was visited by 550 people. It is a yearly one
day event with presentations by the best Dutch
physicians.
As from November 2015 my team of 76 volunteers
did organize, in cooperation with the concerning
hospitals, 62 prostate cancer information meetings.
These meetings are approximately attended by 80 -
150 persons. These meetings are a source of
extended donors.
Produced our PKS video in a shorter version, the main
video is 11 minutes. The shorter version is approx. 5
minutes. Both can be seen on You Tube. I am now
engaged in having both videos in the English
language.
As from December we formed with Bayer a
cooperation to organize meetings in hospitals using
Radium 223. All the costs involved are accounted for
by Bayer. These meetings, 12 in total through the
whole country, will start at the end of this month.
And of course last but not least the organisation of
the UOMO General Assembly, together with our PKS
contributor members on the SS Rotterdam in
Rotterdam as from June 16 until June 19.
Roger Wotton
Made a submission to the UK National Screening
Committee on improvements to testing protocols and
improvements in early diagnosis
Had an article published in “Trends in Urology &
Men’s Health” on quality standards for prostate
cancer
Gained agreement from UK support groups to change
the constitutional nature and governance of Tackle to
become a Charitable Company Limited by Guarantee
on 1.1.2016
Worked with other UK cancer charities and submitted
recommendations for a new Cancer Drugs Fund for
innovative drug treatments
Produced two videos for patients – one with a focus
on rugby and one as a good example of a support
group.
As an aside, I would like to show these two videos to
our group when we meet in Munich, if that can be
arranged.
“The views expressed in this newsletter are not necessarily
the views of Europa Uomo”
“Did You Know?” European Newsletter contacts and email addresses
Austria: Ekkehard Büchler, efb@gmx.com; Belgium: Henk Van daele, henk.vandaele@telenet.be; Bulgaria: Alexander Marinov,
alpemarinov@abv.bg; Cyprus: Andreas Moyseos, andreas.moyseos@cytanet.com.cy; Czech Republic: Dalibor Pacík, dpacik@fnbrno.cz; Denmark:
Poul Tolstrup Christensen, ptc@propa.dk; Finland: Hannu Tavio, hannu.tavio@gmail.com; France: Roland Muntz, info@anamacap.fr; Germany:
Günter Feick, g-feick@gmx.de; Hungary: Dr. Tamás Simon MD. Ph.D., simon@rakliga.hu; Ireland: John Dowling, euomosecjd@gmail.com; Italy:
Malcolm Galloway Duncan, mqi@hotmail.co.uk - europauomo.italy@virgilio.it; Lithuania: Zygimantas Kardelis, karzygis@gmail.com; Norway: Nils
Petter Sjøholt, nils@prostatakreft.no; Poland: Tadeusz Rudzinski, stowarzyszenie.gladiator@poctza.fm; Portugal: Joaquim da Cruz Domingos,
cruzdomingos@outlook.pt; Romania: Toma Catalin Marinescu, rokapros@yahoo.com; Slovak Republic: Josef Blazek, josef.blazek@vsbm.sk –
uomosk.3@gmail.com; Spain: Jordi Estapé, jestape@fefoc.org; Sweden: Calle Waller, calle.waller@partnershipforeurope.se; Switzerland: Max
Lippuner, info@europa-uomo.ch; The Netherlands: Kees van den Berg, voorzitter@prostaatkankerstichting.nl; United Kingdom: Ken Mastris,
ken.mastris@btinternet.com.