Did You Know June 2016 Newsletter

1. EUROPA UOMO / Did You Know? N°2/2016 1
Europa Uomo’s new board as off the General Assembly, June 20-21, 2015:
Contents
p.1 Editorial
p.3 The Chairman’s Letter
p.4 PSA Testing misunderstood
Awards
p.5 Prostate cancer deaths ‘could rise by a third’,
Charity warns
p.6 PSA Consensus
p.7 EAU Patient Information
p.8 News Flashes
p.10 Communications: Tackling the Issue
p.11 Prostate cancer survivors and mental health
p.13 Radiotherapy for metastatic prostate cancer
p.14 Prostate Cancer Units Network
p.15 Member events in 2015 and proposals for 2016
(part II)
p.16 Overview Articles 2015
Website Europa Uomo
Editorial
by Malcolm G. Duncan, the Newsletter Editor
Our chairman, Ken Mastris, opens this number of the
Newsletter speaking of the ambitious Strategic Plan
which will be presented to the forthcoming annual
assembly in Hoorn (The Netherlands) for approval.
Much of the discussion in this number of the
Newsletter will be dedicated to varying opinions on
the value and reliability of PSA screening tests and its
possible forthcoming substitution. For the second
time running the United States of America is toying
with the idea. On the contrary, Tackle’s chairman,
Roger Wotton, expresses the strong belief that it is
still valid and at present is the currently approved
initial test for prostate cancer detection, at least in
Europe. Tackle has produced 13 consensus
statements about PSA testing in men without any
prostate cancer symptoms (see pages 6 & 7). One of
the common problems is the limited sensibility of
Did You Know? – N°2 – June 2016
The voice of prostate cancer patients across Europe

2. EUROPA UOMO / Did You Know? N°2/2016 2
many GPs and Tackle is in fact working on a 10 year
project, backed by Professor Robert Wiston, which
will install information directly on the GPs’ computers
in order to increase their awareness once their
patients reach 45/50 years of age. In fact it is
estimated that no more than 8% of British men in this
age category are advised to undergo this test, which
probably accounts for the rather high prostate cancer
annual deaths of around 10,900, probably mainly
caused by late detection. His detailed article was
motivated by a misleading article which recently
appeared in the British press and which, surprisingly,
was written by a GP. One of the News Flashes
touches on the ordeal of Italian men and women
diagnosed with some form of cancer. Reports of
similar ordeals in other European countries are most
welcome in order to sensitize medical and political
authorities on such predicaments and encourage the
most appropriate timely actions to make amends.
Nevertheless the Newsletter reports of ongoing and
so far very promising research being conducted by
the San Raphaele hospital in Milan, reported by the
Daily Mirror and by the monthly Hot Sheet produced
by US TOO. We may shortly have a more reliable
screening test which will also give the important
added advantage as to whether the prostate cancer is
of a dormant or aggressive nature. Currently such
additional advantage requires a biopsy of a tissue
sample which is called a Gleason score.
Is PSA screening on the way out ?
Source: The Daily Mirror & Hot Sheet US TOO
A new blood test invented and still subject to final
tests by Italian doctors is proclaimed to be vastly
superior and more reliable than the current PSA
screening test. Besides noting the existence of a
cancer in the prostate, it is able to diagnose whether
it is aggressive or not, depending on the low level of
testosterone in the blood. A low level indicates an
aggressive cancer which requires urgent surgery,
otherwise Active Surveillance is probably more
appropriate, at least for the moment.
Currently prostate cancer aggressiveness can only be
measured by examining a prostate tissue sample via a
biopsy which is known as the Gleason score.
This same research also promises the possibility of
preventing prostate cancer in the future.
Dr Thorsten Bach, chairman of EAU’s Patient
Information Projekt emphasizes the need to improve
informing patients about the disease and its
treatment which is often sadly lacking due to the
work load of the medical staff, and has therefore
created an appropriate informative website
www.patient.uroweb.org which contains EAU
guidelines and unbiased information.
The column named “News Flashes” contains several
other interesting novelties such as Pharmacovigilance
and the PRAC strategy which assures the safety of
drugs and medicines; ASCO’s (American Society of
Clinical Oncology) final recommendation of Active
Surveillance to avoid over-treatment; Vanderbilt’s
examination of risk factors of Cardiovascular disease
in prostate cancer survivors; and the Guardian
reports of diagnostical errors made by a leading
Australian urologist which affected at least 40
patients, which led to the sacking of a South
Australian health executive; The American Journal of
Clinical Oncology warns against an overuse of
radiation; researchers reported that using non-coding
RNAs as biomarkers will lead to more reliable and
accurate tests for prostate cancer than the current
PSA test; US TOO’s Hot sheet in May warns against
possible complications related to prostate biopsies
disclosed by Mayo Clinic researchers; the frequent
ordeal of Italian cancer patients of both sexes; and
finally but most important ESO (European School of
Oncology) has produced an appropriate website
where prostate cancer patients may shortly find the
nearest specialised hospital in treating this disease
www.prostatecancerunits.org. This website will also
cover other European countries. Here they will meet
a team of specialists of all kinds, urologists,
oncologists, radiologists, psychologists etc. and be
personally involved in the search for the most
appropriate treatment, which may be simply Active
Surveillance, depending on the nature of the prostate
cancer: dormant or aggressive.
Roger Wotton, Tackle’s chairman, speaks of the
importance of communications and their success
both with the press and with various governmental
bodies such as the NHS and NICE, as well as their
constant efforts to keep all their 80+ centres,
distributed throughout the country, promptly
informed on all matters.
I have included a most interesting article produced by
Marie-Anne van Stam of the Netherlands Cancer
Institute Utrecht (NL) which warns of higher levels of
anxiety, depression and even suicide of prostate
cancer patients in comparison with the general
population, and ways and means of counteracting
and resolving this dilemma. They observed in their
research 6 common risk factors: being a widower,

3. EUROPA UOMO / Did You Know? N°2/2016 3
having a low socioeconomic status, poor general
health, bodily pain and urinary bother.
The article offered by a patient is of a completely
different character. It speaks of dilemmas which were
not limited to prostate cancer, and talks about some
important home truths regarding the reaction of
many men, especially of Latin countries, and
compliments most women for their practical attitude
in facing diseases. He also shows no lack of a sense of
humour which, according to doctors and psychologist
in particular, is an important ally in such
circumstances. I hope to receive other letters from
patients which may help other prostate cancer
sufferers to face life and their disease in a more
realistic manner.
3 national associations provided news on their recent
activities. Austria spoke of their efforts to favour the
further development of eastern European
associations; the Czech Republic informed us of their
many informative and educational publications; and
FEFOC, Spain, celebrated its 20th
anniversary.
The Chairman’s Letter
by Ken Mastris, Chairman Europa Uomo
Dear friends,
As I write this Letter my thoughts are dominated by
the knowledge of our forthcoming General Assembly
in the Netherlands where we will discuss our future
strategy and changes to our Statutes. Our current
Statutes do not permit the Board to make any
changes. The choice will be decided by the voting
members at the GA.
I would like to take this opportunity to thank all
patient advocates who are the backbone of our
advocacy group and who are the voice of prostate
cancer patients throughout Europe. I have heard that
the word advocate is not liked by some of our
members and their associations. If so please let the
editor know of any plausible alternative.
I would like to take advantage of this occasion to
thank all our supporters EAU and ESO for their
continuous support together with our pharma
backers. All relevant details are on our website.
I am pleased to inform you that the Board has
decided to honour Louis Denis as our second patient
ex-office member of the Board. His expertise and
fame have proved invaluable to the Board and to the
association.
I was delighted to hear that some members have
offered their services as Liaison Officers (LOCs), but
we still need others to enable us to be present and
represented at all relevant meetings and events. In
fact the Board has been very busy attending guideline
committees and working with our medical friends in
the setting up of highly specialized prostate cancer
centres.
Although much has been achieved, the majority of
the male sex is still little aware of the importance of
the prostate and the relevance of any diseases
including cancer.
Our main goal is therefore to promote education and
awareness in all our member states and ensure that
all patients get the same standard of treatment and
care. Prostate cancer is suffered by one man out of
every six and can prove mortal, especially when
detection is late. This problem is tackled in our
Strategy Document which requires GA approval.
I invite an open dialogue on the above document and
would greatly appreciate any suggestions also
conveyed to the editor. We still have to improve our
communications with all our associations and
members as well as with the outside world including
the medical and political authorities.
I am looking forward to the coming year and count on
your continued invaluable co-operation and advice.
Best regards,
Ken Mastris

4. EUROPA UOMO / Did You Know? N°2/2016 4
PSA Testing misunderstood
Roger Wotton, Tackle Prostate Cancer, 16 March
2016
The article below appeared in a women’s magazine
published in the UK in March 2016, written by a
doctor. The following response is offered on behalf of
Tackle Prostate Cancer.
PSA testing DOES save lives. The EU Randomised
Screening Study for prostate cancer showed a 22%
reduction in prostate cancer deaths in those
screened, compared to unscreened. Some might
argue that as the most common cancer in men, it
deserves to be on the UK National Screening
Programme list alongside bowel, breast, cervical and
others. It isn’t.
In a perfect world we would have a single, accurate
and universal test for prostate cancer. It’s not a
perfect world. The PSA test is the only currently
approved initial test for prostate cancer, so we have
to work with what we have. There is no point burying
our head in the sand and letting things take their
natural course. The problem with the test is that it is
often misunderstood, used incorrectly and is
generally dependent on a GP willing to offer the test
on request. This doesn’t always happen.
What is certainly needed is an informed approach to
PSA testing. Offering a PSA test to asymptomatic men
from the age of 45 is something now emerging as
accepted practice. Even now, every man over the age
of 50 is entitled to a PSA test in the UK in consultation
with his GP. The problem is, we know that only
around 8% of men in this category are tested.
Looking at the test itself, there is nothing wrong with
a man knowing his PSA score. A man with a score
>100 has prostate cancer. A man with a score >10 is
50% likely to have prostate cancer and a man with a
score in the range 5 to 10 is 25% likely to have
prostate cancer. The problem lies with the approach
followed by some in the medical profession whereby
a man with a score over the threshold, say a 4 or a 5,
is sent straight for a biopsy. Such relatively borderline
scores should be subjected to a risk assessment
looking at factors such as family history, the “free to
total” ratio (a further dimension of PSA testing), MRI
Scanning and even biomarkers in the blood before
biopsy. This would cut out much of the risk of over
treatment. There is clear evidence that 1 in 3 of new
cases are now only put on active surveillance, which
in itself is hardly representative of over treatment.
The fact remains the UK has the highest incidence of
advanced prostate cancer at diagnosis and the lowest
rate of ongoing testing in Europe.
If you look at the data collected by the Graham
Fulford Charitable Trust, a body which carries out
free PSA testing throughout the country with the
support of Tackle, , they have found 953 cancers in
the first 48,000 tests followed up. A find rate of
around 1 in 50 tests. Nobody wants to see over
treatment....the tools already exist to prevent it if
they're in the right hands...but equally importantly
nobody should want to see unnecessary early and
frequently agonising deaths.
Awards
In due recognition of their status as founding
members of Europa Uomo Europe and their precious
involvement and co-operation since the foundation
of this European prostate cancer advocacy
association, which now includes associations in 23
European countries, Dr Alberto Costa, Prof. Dr Louis
Denis and Tom Hudson have been awarded an
Honorary Membership of Europa Uomo.

5. EUROPA UOMO / Did You Know? N°2/2016 5
In view of his special and continual commitment to
Europa Uomo, first as General Secretary, then as
Special Advisor, Prof. Dr Louis Denis has also been
appointed as an ex-officio member of the European
Board.
We thank all of them for their invaluable contribution
to the growth and success of Europa Uomo across the
European continent.
Prostate cancer deaths 'could rise by a
third',Charitywarns
Prostate cancer will kill more than 14,500 men a
year by 2026 unless action is taken, Charity has
said.
BT.com, 26.02.2016
Prostate cancer will kill more than 14,500 men a year
by 2026 unless action is taken, a charity has said.
Deaths from the cancer in the UK could rise by a
third, from the 10,900 men it kills every year at the
moment, due to an ageing population, Prostate
Cancer UK said.
It has launched a 10-year plan, backed by Professor
Robert Winston, to cut cancer deaths and improve
diagnosis, treatment and prevention.
A new tool for GPs should be available within the
next five years to pick up more cancer cases and
prevent too many men undergoing biopsies that may
not be needed.
It will use the current PSA (prostate specific antigen)
test, which is a blood test that can detect the early
signs of an enlarged prostate.
Charity's director of research, Dr Iain Frame, said the
new tool would be built into existing GP computer
systems.
"It will let them input information like a man's age,
ethnicity, family history and PSA level, and give back
an indication of his individual risk of having
aggressive prostate cancer," he said.
"More than that, it will then give both the man and
his doctor a clear idea of what they should do next -
whether that's go straight to a urologist, not to worry
about another test for years, or something in
between - a bit like a red/amber/green traffic light
system."
The charity's plan will also look at prevention,
including investigating whether there are any events
that trigger prostate cancer growth.
Further, it will look at whether diet, exercise or
environmental factors impact on prostate cancer, and
further research into preventing prostate cancer from
returning.
Overall, Prostate Cancer UK wants to halve prostate
cancer deaths within a decade.
Professor Winston said: "When you get to my age,
prostate cancer is one those things that becomes a
real threat.
"So this plan is game-changing.
"If prostate cancer can be brought to a standstill
within my lifetime and reduced to something that my
sons and my grandsons need not fear, that's big
news.
"But Prostate Cancer UK needs our support to get
there.
"We have a historic opportunity which we'd be crazy
to miss."
Prostate Cancer UK's chief executive Angela Culhane
said: "The urgent objective is to shift the science and
change prostate cancer from a killer into something a
man can live with.
"This is the endgame.
"We're on the brink of the scientific breakthroughs
necessary to stop this disease in its tracks so that by
2026 it won't pose the threat it does today.
"Right now, prostate cancer kills a man every hour in
the UK and that figure is set to rise.
"One in three men diagnosed with the disease
currently dies from it, putting survival rates for our
men behind most of Europe.
"It's scandalous and we can't let it continue."
A Department of Health spokesman said: "The
number of people surviving cancer is at a record high
and continues to improve. But we want to be even
better and save more lives.
"We are continuing to increase awareness of
symptoms, training more staff to do tests and have
committed up to £300 million a year by 2020 on
increasing testing to improve early diagnosis."

6. EUROPA UOMO / Did You Know? N°2/2016 6
PSA Consensus
Roger Wotton
Working with key parties from across the UK,
including ourselves, Prostate Cancer UK have led the
development of a set of 13 consensus statements
about PSA testing in men without symptoms. You can
read the statements below or on Prostate Cancer
UK’s webpage here
Commenting on the statements, Dr Jon Rees - a GP
and member of our Clinical Advisory Board - said
"The controversy that surrounds PSA testing for
asymptomatic men means that most GPs face
constant uncertainty on how to offer a sensible,
evidence-based approach to this problem. This
approach, however, also needs to be based on
pragmatism – men are understandably concerned
about prostate cancer, and a ‘no-testing’ policy is
utterly unrealistic in real life primary care".
We have also issued a response to the statements
which you can read here.
Statement 1
In the future, health professionals should look at a
man’s PSA level alongside other known risk factors
as part of a risk assessment tool, when one becomes
available. Prostate Cancer UK are currently working
to develop a simple and reliable risk assessment tool,
which will show whether a man is at risk of getting
prostate cancer. This will help health professionals to
support men at risk and talk to them about possible
further tests.
Statement 2
GPs and practice nurses should know what may
increase a man’s risk of getting prostate cancer.
Statement 3
GPs and practice nurses should be prepared to start
conversations about the pros and cons of the PSA
test with men who have a higher risk of getting
prostate cancer.
Statement 4
The government and health organisations, with help
from health professionals and charities, should
make sure men know about their risk of prostate
cancer, and about general prostate health.
Statement 5
All men should be able to have a PSA test if they’re
over 50. Men who have a higher risk of prostate
cancer should be able to have a PSA test if they’re
over 45. The Prostate Cancer Risk Management
Programme guidance, from Public Health England,
states that "the PSA test is available free to any man
aged 50 or over who requests it, after careful
consideration of the implications".
Statement 6
If a man is thinking about having a PSA test, his GP
or practice nurse should talk to him about the pros
and cons. This should help the man decide whether
or not to have a PSA test.
Statement 7
If a man has no symptoms of a prostate problem
and is clearly likely to live for less than 10 more
years, his GP or practice nurse should advise him not
to have a PSA test. This is because a man in this
situation is unlikely to benefit from having the test.
Early prostate cancer doesn’t usually cause any
symptoms. It often grows slowly and has a low risk of
spreading. So it may never cause any problems in a
man’s lifetime or affect how long they live.
Statement 8
If a man decides to have a PSA test, his GP should
offer him a digital rectal examination (DRE) as well,
even if he has no symptoms of a prostate problem.
Statement 9
Even if a man has no symptoms of a prostate
problem, he should be referred to a specialist at the
hospital for more tests if:
 he has a higher risk of prostate cancer, and
 he is aged between 45 and 49 years, and
 his PSA level is higher than 2.5 ng/ml.
Statement 10
When deciding whether to refer a man to a
specialist at the hospital, GPs and practice nurses
should look at the man’s previous PSA test results.
They should look at any rise in the man’s PSA level,
even if their PSA level is still ‘normal’ for their age. A
‘normal’ PSA level is less than 3ng/ml for men aged
50-69.
Statement 11
Men with a ‘normal’ PSA level should be able to
have another PSA test in the future, even if they still
have no symptoms of a prostate problem. This is
known as repeat testing. Men should discuss how
often to have a PSA test with their GP or practice
nurse. This will depend on that man’s risk of getting
prostate cancer.
Statement 12
Men over the age of 40 who have no symptoms of a
prostate problem should think about having a PSA

7. EUROPA UOMO / Did You Know? N°2/2016 7
test to help work out their risk of getting prostate
cancer later in life. This is known as a ‘baseline’ PSA
test. If a man aged between 40 and 49 years has a
PSA level higher than 0.7ng/ml, this may mean he has
a higher risk of getting prostate cancer. He and his GP
or practice nurse should talk about having regular
PSA tests in the future. This might be a good way to
spot any changes in the man’s PSA level that might
suggest prostate cancer.
Statement 13
The PSA test (with or without a digital rectal
examination) should not be used in a national
screening programme for men in the UK.
Source: Prostate Cancer UK. Consensus statements
on PSA testing in asymptomatic men in the UK -
Information for patients and the public. 2016.
Available from:
www.prostatecanceruk.org/PSAconsensus
EAU Patient Information
Prof. Dr. med. Thorsten Bach (FEBU), Chairman EAU
Patient Information Projekt
Informing patients about their disease, the treatment
course and follow-up is an essential part of treatment
success. During the daily working routine
unfortunately it is almost impossible to fulfil this
demanding process by healthcare providers due to
the regular work load. Furthermore, a lot of our
patients seek information about disease and
treatment options on their own, naturally ending up
with an internet search, which is often where
problems begin. Commercial interests and bias lead
to a lot of unhelpful and in some cases even
dangerous information and it is hard, if not
impossible, for our patients and their relatives to
distinguish between medical and commercially driven
information.
To overcome this problem, EAU founded the Patient
Information Project (www. patient.uroweb.org), to
provide EAU guidelines-based, reliable, unbiased
information on urological disease for patients,
relatives and healthcare providers. It is a
collaborative effort between urologists, national
societies and patient groups such as Europa Uomo
and the European Cancer Patient Coalition (ECPC).
The goal is, to lift the understanding of our patients
about their disease, to a new level.
A Patient Information Working Group has been
established to ensure further development of the
project. Under the chairmanship of Prof. Thorsten
Bach from Hamburg, young urologists from the
Young Urologists Office (YUO/YAU), the European
Society of Residents in Urology (ESRU) and nurses
(EAUN) will be responsible for developing new
patient information, updating existing topics and
exploring new ways to further expand the Patient
Information initiative, with novel products such as
animated videos and 3D images.
The re-structured and restyled website of the EAU
Patient Information (http://patients.uroweb.org)
offers all topics in a new, clearly arranged format,
including patient summaries of recent research, news
items and other resources such as an ever expanding
database of patient support groups throughout
Europe - all to create a comprehensive platform that
is used by patients and medical practitioners alike.

8. EUROPA UOMO / Did You Know? N°2/2016 8
Note Europa Uomo:
We, as patient organisation, recommend to read the
EAU Patient Information:
http://patients.uroweb.org/i-am-a-urology-
patient/prostate-cancer/ where you can find EAU
information on prostate cancer in several languages.
NEWS FLASHES
Better to be safe than sorry!
Summary of information provided by EMA
The safety of the drugs and medicines produced by
the pharmaceutical industry is the responsibility of a
body appropriately named Pharmacovigilance and
the PRAC strategy adopted for the measurement of
the above medical innovations. Its activities,
organized in co-operation with the regulators and
pharmaceutical companies, strive to improve the
functioning of medical products, prevent or minimize
adverse events and restrict access to medicines when
the benefit-risk profile is no longer positive for a
certain patient population. National competent
authorities and EMA (European Medicines Agency)
have a legal obligation to monitor outcomes of risk
management controls and suspected ADRs(Adverse
Reaction Reports), and so prevent or minimize
eventual adverse events.
It is of utmost importance to measure the impact of
pharmacovigilance activities in order to favour the
development of an EU proactive pharmacovigilance
system, so as to review the effective benefits and
eventual risks of individual medicines in use in
Europe.
The guiding principles of the PRAC strategy are as
follows: health-focused, science based, embedded in
the work of the network of national competent
authorities, co-operation with academia, patient
associations, healthcare professional associations and
industry, as well as targeting key pharmacovigilance
activities where improvements are most likely to
benefit patients.
ASCO Endorses Active Surveillance for Prostate
Cancer
Extract from US TOO Hot Sheet April 2016
While other American organisations have
recommended AS for some time led by NCCN in 2010
for the treatment of low risk prostate cancer, the
American Society of Clinical Oncology (ASCO) has only
recently recommended AS instead of immediate
treatment for most men with low risk prostate
cancer.
“There is growing awareness that AS is an important
approach to spare many prostate cancer patients
from treatment that they don’t need and that can
cause lasting quality-of-life effects.” Lead author of
the endorsement is Ronald C. Chen, MD, MPH, from
the University of North Carolina Lineberger
Comprehensive Cancer Center in Chapel Hill.
Vanderbilt Examines Risk Factors for
Cardiovascular Disease in Prostate Cancer
Survivors
Extract from US TOO Hot Sheet April 2016
The estimated three million prostate cancer survivors
in the US are likely to die from something other than
cancer, thanks to early detection, effective treatment
and the disease’s slow progression. What survivors

9. EUROPA UOMO / Did You Know? N°2/2016 9
need to be more concerned with is heart disease, the
most common non-cancer cause of death for men
with prostate cancer, according to a paper published
in the journal Circulation, authored by Vanderbilt
physicians.
Figure: Conceptual approach for impact
measurement of pharmacovigilance (EMA, PRAC
strategy on measuring the impact of
Pharmacovigilance activities, 11 January 2016)
Though currently there are no broadly accepted
criteria in order to evaluate pharmacoviligance
activities and therefore improve support for PRAC
strategies, much depends on spontaneous reporting
of suspected adverse reactions. As part of the
ongoing strategy, an ad hoc workshop will be
organized during the course of 2016 to spread news
on current activities and progress, and thus create
synergy between the various national and
international initiatives.
Prostate Cancer Detection from Urine RNA
Steps Closer
Testing for non-coding RNA molecules in urine may
offer a way to detect prostate cancer that is more
accurate and reliable than current methods using
biomarkers such as PSA and PCA3. The researchers
believe using non-coding RNAs as biomarkers will
lead to more reliable and accurate tests for prostate
cancer than the current PSA test.
This was the conclusion of a German study presented
on March 11-15, 2016, at the European Association
of Urology Congress (EAU16) in Munich, Germany by
Friedemann Horn, a professor in the University of
Leipzig and the Fraunhofer Institute for Cell Therapy
and Immunology IZI, and Manfred Wirth, a professor
in the University of Dresden. Both researchers led the
work.
Extract from Hot Sheet 5/16 of US TOO
SA orders review after 100 men were given
false positive prostate cancer results
The errors were uncovered by a leading urologist, Dr
Peter Sunderland, who ordered new tests which gave
negative results. At least 40 of his patients were
affected by this mistake. The health minister, Jack
Snelling, has ordered an independent report by an
interstate expert to find out what went wrong and
the errors led to the immediate sacking of a South
Australian health executive. The opposition
spokesman, Stephen Wade, has however called for a
wider ranging inquiry and asks when were the
patients duly informed of this terrible error.
From The Guardian, UK
For Prostate Cancer, More Radiation May not
Improve Survival
New technology has enabled doctors to administer
higher doses of radiotherapy (RT) to prostate cancer
patients with fewer side effects. However, a new
study shows that escalating the dose may not actually
help in the long term, at least not men with localized
prostate cancer. The results were published online in
the American Journal of Clinical Oncology.
Extract from Hot Sheet 5/16 of US TOO
PSA Screening Publications Influence Biopsy
Rates and Associated Complications
While absolute rates of biopsy and post-biopsy
complications have decreased following several
benchmark PSA screening publications, the relative
risk for each patient continues to increase, according
to a new study by Mayo Clinic researchers. The study
is the largest to exam the impact of PSA screening
and revised PSA screening guidelines on rates of
prostate biopsy and the first to examine their impact
on post-biopsy complications. The results, which
appeared in European Urology suggest a need to
reduce the harm associated with biopsy.
Extract from Hot Sheet 5/16 US TOO

10. EUROPA UOMO / Did You Know? N°2/2016 10
The Prostate Cancer Units Network
Diagnosed with Prostate Cancer consult the following
website www.prostatecancerunits.org to find the
nearest specialized hospital for prostate cancer
patients. There you will meet a team of experts in
urology, oncology, radiology and psychology who,
together with you, will advise what is the most
appropriate treatment depending on the nature,
dormant or aggressive, of the prostate cancer and
thus avoid unnecessary drastic treatment options
when unneeded and thus save the quality of life of
the patients.
This website is being created by the European School
of Oncology (ESO), Milan.
By Malcolm Duncan
The Ordeal of Italian Cancer Patients
During the course of 2015, 366,000 men and women
were diagnosed as suffering from some form of
cancer and the total number of patients is estimated
at about 5% of the population. In the same period of
time some 175,000 patients died.
Two important Italian cancer associations (FAVO and
AIOM) together with the CENSIS Foundation have
publicly proclaimed the predicament of many Italian
cancer patients due to the average time needed for
the adoption of new cures, mainly of a bureaucracy
origin, stressing waiting times for treatment and the
need to close about 700 oncological centres due to a
lack of the most modern equipment and specialists.
ESO (European School of Oncology- Italy) has created
an appropriate website
(www.prostatecancerunits.org) in order to direct
patients to the best equipped centres for prostate
cancer patients.
Source: Il Giornale 13/5/16
Communications : Tackling the Issue
Roger Wotton, Chairman, Tackle Prostate Cancer, 4th
May 2016
Tackle Prostate Cancer (Tackle) is the voice of
prostate cancer patients and their families in the UK.
As a National Federation, we only exist by virtue of
our 80+ support groups across the country,
representing some 15,000 members. Effective
communications is a challenge, not just in dealings
with the media, but also in making sure our
organisation stays in touch with its grass roots - –the
patients!
So, how do we approach this challenge? Our overall
strategy has three themes – Supporting Patients,
Raising Awareness and Campaigning on Issues. Tying
all three of these together is a communications
strategy represented by the picture below:
One key goal is to make sure we represent the best
interests of our members. We have a unique regional
structure whereby an individual from a support group
in each region of the country steps up to be a
spokesperson for support groups in that part of the
country. This way we can stay in touch through
regular teleconferences and workshops. We call this
Regional Sensing. We also communicate directly with
our support groups through regular email Support
Group Briefings on particular topics of interest, or to
gauge opinions on topics or developments. In
addition we stay in touch with individual members
through our quarterly “Prostate Matters
Newsletter”.
When it comes to working with the media, we often
work in conjunction with Prostate Cancer UK, another
charity which has significantly more resources
available than Tackle does, and we leverage their
media capabilities where we share a common
viewpoint. We do, however, have our own Media
Relations Support where we validate our external
communications from a professional perspective and
to achieve maximum impact. During the past year we
have had increasing success in having articles
published in various national newspapers including
The Times, The Independent and The Guardian. We
have also had an article published in a professional
urology periodical.
See http://trendsinmenshealth.com/article/the-gold-
standard-prostate-cancer-journey-from-the-patients-
perspective/. Our influence has also been felt with

11. EUROPA UOMO / Did You Know? N°2/2016 11
various UK Governmental bodies such as NHS
England and the National Institute for Health and
Care Excellence (NICE) where we are increasingly
invited to offer submissions and views on various
clinical and drug developments.
It is very often the case that our media stories are
derived from Patient Stories and Campaigns, where
we can use our members’ personal experiences and
local campaigns for national benefit. This includes
making videos to help spread the word. See
examples at https://vimeo.com/152961653 and
https://www.youtube.com/watch?v=HxZP_ZXf5j8&fe
ature=youtu.be.
Working as a Federation it is important we send a
consistent message out and have some uniformity
across our 80+ support groups. To this end we
provide a Group Website Template to help groups
establish a consistent web presence. We also make
sure all of our achievements and our progress
reporting appear as WebNews Updates. Where we
need to produce additional information, for example
for partners of patients, or on topics such as travel
insurance or maintaining good health we produce
Awareness Leaflets which enjoy a wide circulation.
Added to this we also offer Branded Merchandise,
such as banners, flags, phone chargers, and branded
give-aways such as pens, travel wallets and
wristbands.
Finally, we believe it is important for any national
organisation to always remember the population it
serves and so we have a policy of trustees visiting
support groups to maintain this connection. We call
these Trustees In Touch Sessions.
Overall, we have developed this integrated
communications approach to ensure we maintain an
effective two-way exchange internally and to follow a
professional approach externally, always
remembering Tackle is the voice of prostate cancer
patients and their families.
Prostate cancer survivors and
mental health
Assessment and interventions on mental health
of survivors are crucial to prevent depression
"The following very explicit article appeared in the
magazine EUT Congress News on the occasion of
EAU's Congress in Munich 11-15th March 2016"
Marie-Anne van Stam, Dept. of
urology, UMC Utrecht Cancer
Center, The Netherlands Cancer
Institute Utrecht (NL)
Co-Authors: J.L.H.R. Bosch, H.G.
van der Poel, S. Horenblas, N.K.
Aaronson
Prostate cancer is the most prevalent diagnosed
cancer in men (American Cancer Society, 2015).
About one in seven men will be diagnosed with
prostate cancer during his life.
Fortunately, the average life expectancy of patients
newly diagnosed with prostate cancer is a decade or
longer (Ferlay et al., 2010). According to the
American Cancer Society a ‘long-term survivor’ is a
person who is alive five years after being diagnosed
with cancer. Therefore, the majority of patients with
prostate cancer will become long-term survivors.
Men diagnosed with prostate cancer have higher
levels of anxiety, depression and suicide compared to
an age- and gender comparable cohort from the
general population (Bennett & Badger, 2005;
Mehnert, Lehmann, Graefen, Huland, & Koch, 2010).
Ongoing assessment, identification, and psychological
interventions have been found successful in relieving
distress for prostate cancer patients and survivors
(Skolarus et al., 2014). Unfortunately, they are
inconsistently available in prostate cancer
survivorship care. These interventions are especially
important for prostate cancer patients and survivors
who are at high risk for mental health problems (the
target population).
Therefore, in our study (collaboration between UMC
Utrecht Cancer Center and The Netherlands Cancer
Institute), we aimed to describe this target
population and we further unravelled the long-term
relation between prostate cancer and mental health.
These general aims were divided in three research
questions: 1. Are prostate cancer survivors more at
risk for mental health problems than an age and sex

12. EUROPA UOMO / Did You Know? N°2/2016 12
matched reference group without prostate cancer?;
2.What are risk factors for mental health problems in
prostate cancer survivors?; and 3. Do these risk
factors differ from risk factors in the reference
group?
To answer these three questions we composed two
groups. The first group, ‘The prostate cancer
survivors’, consisted of 644 prostate cancer survivors.
The second group, ‘Reference group’, consisted of
644 men from the general population with a
comparable age but without a history of prostate
cancer (Figure 1).
‘Mental Health’ is not something you can easily see.
We used a standardized questionnaire, the Short
Form (36) Health Survey to measure the quality of life
of the men in the study. This respondent-reported
survey contains a mental health scale (MHI-5). One
can score between 0 and 100. A score of 52 points or
less suggests severe depressive symptomatology
(Ware, Snow, Kosinski, & Gandek, 1993).
The next step was to perform analyses to answer the
three research questions. First, we compared the
mental health scores of ‘Prostate cancer survivors’
with the ‘Reference group’ (Question 1, Figure 1). We
observed that our ‘Reference group’ had significantly
better mental health scores compared to the
‘Prostate Cancer survivors’ (difference of -6.52, p <
0.01). This means that in the ‘Prostate cancer
survivors group’ 14% of the men were suspected of
having depressive symptomatology. This was only 6%
in the ‘Reference group’ (OR 0.41, 95% confidence
interval 0.28-0.60).
Secondly, we identified prostate cancer survivors
who were particularly at risk for mental health
problems (Question 2, Figure 2). We observed six
important risk factors: 1. Being a widower; 2. A low
socioeconomic status; 3. Poor general health; 4.
Bodily pain; 5. Urinary bother; and 6 - less sexual
satisfaction. Health professionals should pay extra
attention to survivors with these characteristics or
health problems. These men are at risk to develop
mental health problems.
Lastly, we analyzed whether these risk factors in the
‘Prostate Cancer Survivors’ group differed from the
risk factors in the ‘Reference group’ (Question 3).
Two differences between the groups were observed.
1. In the ‘Reference group’ a higher age was a risk
factor for mental health problems. No Association
between mental health and age was found in the
prostate cancer group. 2. A poor general health was a
stronger risk factor in the prostate cancer group.
In summary, prostate cancer survivors are more at
risk for mental health problems. Therefore, this study
stresses the importance of ongoing assessment and
interventions focusing on the mental health of
prostate cancer survivors especially for men who
have to cope with additional physical, economic and
emotional disturbances.
Mental health problems are not only a problem for
prostate cancer patients. Many other patients
experience depressive symptoms possibly associated
with the effects of a disease. However, possibilities to
help these patients (e.g. by referring to a mental
health professional) are often not well known by
health professionals. Thinking about the answer to
the following question might be the first step: What
can you do in your professional setting when you
suspect a patient of having mental health problems?
Saturday, 12 March, Thematic Session 3, 17th
International EAUN Meeting, Perspectives in prostate
cancer care.

13. EUROPA UOMO / Did You Know? N°2/2016 13
Radiotherapy for metastatic
prostate cancer
T. Kiljunen, PhD, Adj. Prof, Medical Physicist
T. Joensuu, PhD, Adj. Prof, Medical Oncologist
Docrates Cancer Center, Helsinki, Finland
For patients with metastatic prostate cancer (PCa)
the median survival has conventionally been around
30 months when treated with hormonal therapy. The
increasingly potential new systemic therapy options
for metastatic PCa are now prolonging survival not by
months, but by years. However, use of radiation
therapy (RT) in the metastatic setting has been
preserved almost exclusively for palliation of pain.
Obstructiv
e uropathy
is the key
urological
complicati
on of
progressiv
e PCa and
associated
with poor
prognosis.
RT is
known to
improve
obstructive
symptoms
in up to
80% of
patients.
We started
to use the
radiation
therapy
already at
1995 in
order to
relieve the
urinary retention with those men whose prostate
cancer was locally progressed due to the fading
efficacy of hormonal castration. With radical doses to
the prostate tumors we got complete responses. So
we started to think that it would be clinically more
beneficial to give radical radiotherapy to the prostate
in advance to prevent the retention later on during
probable progression at the time of castration
resistance. This experimental strategy has lately been
demonstrated to dramatically reduce long-term
mortality on locally advanced disease and to prolong
survival of PCa patients with lymph node metastases.
Besides the many achievements in systemic therapies
also RT techniques have improved by the
introduction of intensity modulated radiation therapy
(IMRT) and most recently volumetric modulated arc
therapy (VMAT). VMAT has been shown to improve
RT of PCa by facilitating delivery of more conformal
doses to planning target volume (PTV) and by
reducing the dose of organs at risk. Moreover, VMAT
has been proven to be an efficient tool when treating
multiple metastases and complex disease, and even
superior to Cyberknife in hypofractionated PCa
treatments.

14. EUROPA UOMO / Did You Know? N°2/2016 14
When the treatment optimization and image
guidance possibilities enabled by the present VMAT
techniques are professionally used, it is possible to
irradiate distant metastases simultaneously with the
primary locoregional PCa. Our preliminary
experiences suggest that choline-PET is a clinically
useful tool when the aim is to delineate active
prostate cancer targets most precisely. Giving a
radical dose to the prostate will most probably give
the best palliation, if urinary obstruction can be
prevented while the total cancer burden is
simultaneously minimized as the treatment is
targeted to active disease.
The recommended healthy tissue tolerances
(Quantec) have not been exceeded even though our
treatment volume is much larger than traditionally
accepted. Also, our patients have reported no side
effects due to the additional treatment targets. We
conclude that the VMAT offers a good optimization
tool for adding extra PTVs to the radiotherapy plan.
Radiotherapy of bone metastases concomitantly with
irradiation of the primary prostate tumor is a safe
and well-tolerated approach and deserves to be
studied in a randomized setting.
Contact the authors for more details and check the
related publication: Kiljunen et al. VMAT technique
enables concomitant radiotherapy of prostate cancer
and pelvic bone metastases. Acta Oncologica 2014,
Oct 13:1-7.
Figure 1. The axial (a, c, e) and coronal (b, d, f) dose
distributions of 63 year old prostate cancer patient
with CT + MR detected metastases in left ilium and
acetabulum, and in right parailiac lymph nodes. Pre-
treatment PSA was 250 μg/l and Gleason score 9. 1.5
years after the radiation therapy, the PSA was <0.1
μg/l, the bone metastases were sclerotic, and the
lymph node metastasis shrinked. Image courtesy of
Acta Oncologica.
SECRETARIAT Europa Uomo
Lange Gasthuisstraat 35-37
2000 Antwerpen - Belgium
Tel: +32 3 338 91 51
Fax: +32 3 338 91 52
europauomo@skynet.be
www.europa-uomo.org

15. EUROPA UOMO / Did You Know? N°2/2016 15
Members events in 2015 and
proposals for 2016 (part II)
AUSTRIA
by Ekke Büchler
Selbsthilfe Prostatakrebs Austria is active both
nationally and internationally, above all to favour the
further development of eastern European prostate
cancer associations.
We organize monthly lectures for our members on
topics like: “Cancer – and what does the brain say?”;
“Incontinence – a burden for PC patients”; and on the
latest therapies such as “ Castration resistant PC
patients”.
Last December Prof. Michael Marberger was
nominated Honorary President of our association in
recognition of his contribution to solving the problem
of prostate cancer and to the development of our
national prostate cancer association.
In the same month we launched our new website
www.prostatakrebe.at. In March 2016 we
participated at the celebration of the tenth
anniversary of Europa Uomo Slovakia. We shortly
expect to get rehabilitation authorization according
to the German Guidelines S3. The Medical University
of Vienna has proved of great help in achieving this
objective.
CZECH REPUBLIC
By Dalibor Pacik
Europa Uomo CZ activities in 2015:
 Auspices of project EUCZ by Mayor of Brno
 Re-edition of brochure Prostate for men and
women who love them (internet version and sent
upon request free of charge also as hard copy)
 Educational webcast Advance prostate cancer –
lectures update bone care, quality of life, urinary
incontinence
 Support of Facebook EUCZ pages
 Calendar 2016 with prostate diseases educational
text (approx. 50,000 distributed across
pharmacies in CZ)
 Educational brochure about BPH (approx. 50,000
distributed across waiting rooms of GPs and
50,000 by means of pharmacies)
SPAIN
FEFOC
by Tania Estape
The Spanish Europa Uomo supporting entity, FEFOC,
private not for profit non-governmental foundation,
devoted to cancer, was set up in April 1996. So, we
have reached 20 years of non-stop activities and we
are very happy communicating it to all of you. In
those 20 years FEFOC's main goals have been
prostate and breast cancers.
Programs for older patients, supporting relatives and
minorities' specific oncology problems are also
attended to. FEFOC runs five online pages, produces
and diffuses educational material and gives any kind
of support. Our main values are independent
judgment and evidence based activities. And we are
very proud to represent Europa Uomo in Spain. We
are most grateful to the precious contribution of our
loved friend and colleague, Dr Elias Valverde now
replaced by Dr Tania Estapé. We are planning for a
most positive future for Europa Uomo Spain and a
very bad one for prostate cancer, as in another 20
years this disease will hopefully be no more than a
past nightmare just to tell our grandsons and
granddaughters: “...Do you know that years ago...”

16. EUROPA UOMO / Did You Know? N°2/2016 16
Overview Articles 2015
N°1 – March 2015
Depression and Anxiety: two sides of the same coin;
Depression (1) (T. Estapé)
The Humanisation of Cancer Care (M. Duncan)
Union of International Associations (UIA) Round Table,
Europe – Dublin, November 2014 (F. Brennan & J. Dowling)
PCa Europe 2014 Conference (B. Dourcy-Belle-Rose)
The Hippocratic Corner (L. Denis)
N°2 – June 2015
Depression and Anxiety: two sides of the same coin;
Anxiety (T. Estapé)
Common Shortcomings in Prostate Cancer Care (M.
Duncan)
After Twenty Years is There a Future? (J. Dowling)
Clinical Trials Registration & Reporting
The Austrian Charter Demands to the Austrian Health Care
relative to Prostate Cancer (E. Büchler)
Every Moment Matters, an advanced prostate cancer
disease awareness programme, and Every Voice Matters
survey results (M. Duncan)
Cancer Care and Support Services in Ireland (J. Dowling)
East Surrey Hospital Apology over cancer patients’ care
(BBC News)
Prostate Cancer sufferer: “It’s either buy the drugs, or die”
(The Telegraph Online)
The Hippocratic Corner: “On Prostates and Hormones” (L.
Denis)
Special issue EPAD 2015
How Does a Patient Organisation Survive? (J. Dowling)
N°3 – September 2015
The Strategic Plan in brief (M. Duncan)
A plea to the European Parliament (M. Duncan)
United Against Prostate Cancer (M. Duncan)
Prostate Cancer Units (PCUs) (M. Duncan)
Prostate Cancer Units (R. Valdagni)
“We have to work as a team”; Per-Anders Abrahamsson
former Sec-Gen of the EAU retires (CancerWorld)
All Trials (J. Dowling)
About Prostate and Hormones II: Anti-Androgens (L. Denis)
N°4 – December 2015
Raising the Cancer Patients’ Voice (G. Feick)
Back to nature (H. Tavio)
Patients’ values and preferences incorporated into
treatment decisions (K. Tikkinen)
C61. One diagnosis – many diseases. Prostate Cancer has
many faces (P. Hervonen)
Denial (T. Estapé)
One Island – Two experiences of Prostate Cancer (J.
Dowling)
EUPATI – training programmes for patient advocates (J.
Dowling)
About Prostate and Hormones III: A new direction? (L.
Denis)
www.europa-uomo.org
Content:
* About Manifesto
Statutes and Bye-laws
Board news
Code of Conduct
Funding and Sponsors
* Our members
* Newsletters
* News
*Events
*Contact
“The views expressed in this newsletter are not
necessarily the views of Europa Uomo”
“Did You Know?” European Newsletter contacts and email addresses
Austria: Ekkehard Büchler, efb@gmx.com; Belgium: Henk Van daele, henk.vandaele@telenet.be; Bulgaria: Alexander Marinov,
alpemarinov@abv.bg; Cyprus: Andreas Moyseos, andreas.moyseos@cytanet.com.cy; Czech Republic: Dalibor Pacík, dpacik@fnbrno.cz; Denmark:
Thorkild Rydahl, tr@trlaw.dk; Finland: Hannu Tavio, hannu.tavio@gmail.com; France: Roland Muntz, info@anamacap.fr; Germany: Günter Feick, g-
feick@gmx.de; Hungary: Imre Gaál, gaal@rakliga.hu; Ireland: John Dowling, euomosecjd@gmail.com; Italy: Malcolm Galloway Duncan,
mqi@hotmail.co.uk - europauomo.italy@virgilio.it; Lithuania: Paulius Rakštys, paulius@hubertus.lt; Norway: Nils Petter Sjøholt,
nils@prostatakreft.no; Poland: Tadeusz Rudzinski, stowarzyszenie.gladiator@poctza.fm; Portugal: Joaquim da Cruz Domingos,
cruzdomingos@outlook.pt; Romania: Toma Catalin Marinescu, rokapros@yahoo.com; Slovak Republic: Josef Blazek, josef.blazek@vsbm.sk –
uomosk.3@gmail.com; Spain: Jordi Estapé, jestape@fefoc.org; Sweden: Calle Waller, calle.waller@partnershipforeurope.se; Switzerland: Max
Lippuner, info@europa-uomo.ch; The Netherlands: Kees van den Berg, voorzitter@prostaatkankerstichting.nl; United Kingdom: Ken Mastris,
ken.mastris@btinternet.com.