European Prostate Cancer Newsletter Provides Updates on Clinical Trials and Member Associations

EUROPA UOMO / Did You Know? 02/2014 1
Europa Uomo Board
Ken Mastris Ekke Büchler Tor Tausvik Max Lippuner Christian Arnold Malcolm Duncan
Chairman Vice-Chairman Vice-Chairman Secretary Treasurer Member
__________________________________________________________________________________________________________
Contents
p.1 Editorial
p.2 The launching of the European Clinical
Trials Register on PCa
p.3 What counts as a successful outcome in
cancer care?
p.5 An end to Second Class Citizenship
(continued)
p.7 Review of Project Committee Perfor-
mance – status of achievements
p.8 The psycho-oncological nightmare of PCa
p.9 Member Reminiscences
p.12 Selbsthilfe Prostatakrebs, Austria
p.12 US TOO Belgium
p.13 Europa Uomo CZ, Czech Republic
p.13 The Danish PCa Association – PROPA
p.14 Finnish PCa Association – PROPO
p.15 Anamacap, France
p.16 The Bundesverband Prostatakrebs
Selbsthilfe e.V., Germany
p.17 Men Against Cancer – PCa Support
Group, Ireland
p.18 The Polish Gladiator PCa Association
p.18 The Portuguese Prostate Patients
Association
p.19 Europa Uomo Slovakia
p.20 FEFOC, Spain
p.21 Tackle Prostate Cancer, UK
p.22 The Hippocratic Corner
Editorial
Malcolm G. Duncan - Newsletter Coordinator
The enthusiasm already shown by our member
associations has been further confirmed. While
the first issue covered 14 pages we have now
reached 27. Our associations, colleagues and
friends have fully realized the benefit which can
be achieved by contributing to this periodical by
exchanging news on activities and problems and
efforts to resolve the latter. In fact we received
up-to-date accounts from 10 countries. It was
interesting to note how several national
associations have successfully managed to
develop local groups spread over the country.
Germany tops the list with 250, followed by the
UK and Denmark. The number of members for
Denmark is most surprising (3,400), bearing in
mind the modest dimensions of its population.
In the table dedicated to established national
screening arrangements, we saw how
appropriate was the title of the article “An End
to Second Class Citizenship” in the previous
issue, as prostate cancer established screening
tests are limited to Lithuania and Poland. In
several countries you may also have to pay for it
even if you acquire a prescription from your
family doctor (Belgium, Denmark, Norway and
Switzerland), whereas the genteel sex is well
cared for in practically every country. This
should be a Europa Uomo’s top priority.
Newsletter of the 23 European member Forums dedicated to improving knowledge of cancer of the prostate
Did You Know?
N°2 - 2014

One of the most common complaints of several
national associations was the lack of finance in
order to be able to be more active. For that
reason it is of paramount importance that
Europa Uomo does not take an initial “no” by
the European Parliament to their plea for
financial aid entitled “A Call for Action”. Another
initiative, proposed by the Italian association,
called “Europa Uomo: A New Approach” has
similar ambitious objectives. However it still
awaits Board approval.
The efforts and success of the Project
Committee, working in co-operation with
several other European and North American
research bodies, has been finally disclosed in
the Newsletter. One important project which
they have co-operated on now gives up-to-date
information on trials and new cures in the
prostate cancer sector and can be simply
obtained by linking up with the email address of
the European Clinic Trials Register. In future this
will surely reduce the feeling of panic on being
informed that you have contracted prostate
cancer. The problem of psycho-oncological
nightmares on hearing such dreadful news is
discussed in detail by Dr. Tania Estapé from
Spain.
The Hippocratic Corner, written by Prof. Louis
Denis, evaluates the much discussed PSA
(Prostate Specific Antigen) which was first
introduced in 1960 and has been the object of
more than 22,000 articles since its inauguration.
The problem of the PSA test is its correct
interpretation and the danger of subsequent
overtreatment as in many cases the patient is
more in danger of dying from other causes. In
fact there is an increasing recourse to “active
surveillance” as opposed to invasive procedures
as surgery or/and radiation.
We sincerely hope to finally have news from our
Bulgarian and Romanian colleagues in time for
the next issue of the Newsletter, as we feel sure
that, like in the cases of Poland and Hungary,
Europa Uomo may be able to help them to
achieve their most ambitious goals.
The Launching of the European
Clinic Trials Register on Prostate
Cancer
Günter Feick, BPS, Germany
In future the immediate panic which
frequently overwhelms many men, their
wives or life companions and offspring when
they receive the much dreaded news that
they have contracted prostate cancer may
now in part be avoided, thanks to the recent
publication of the above Register, part of the
strive to help men deal with this deadly
disease. In Europe some 417,000 men are so
diagnosed every year.
Günter Feick
It is the positive outcome of an All Clinical
Trials Register Petition to which Gunter Feick,
past Board member and at present ex-officio
Board member, joined on behalf of Europa
Uomo and which has led to the EU law of 3rd
April 2014. In future prostate cancer patients
can count on up-to-date information about
clinical trials, their progress and results,
simply by referring to European Medicines
Agency European Clinical Trials Database
(EudraCT), website:
https://eudract.ema.europa.eu/.
These trials include dealing with metastatic
castrate-resistant prostate cancer,
investigational immunotherapy PROSTVAC-
VF+/- in men with asymptomatic or minimal
symptomatic metastatic castrate-resistant
prostate cancer seeking to improve overall
survival.
The Affinity trial is also evaluating whether
custirsen (experimental treatment), when

combined with second-line chemotherapy,
can improve survival rates and delay disease
progression.
Patients who wish to participate in all such
trials must meet a prescribed set of criteria to
be eligible. The Newsletter will try to keep you
posted on important improvements. In the
meantime patients may resort to the official
home page of the Europe Clinical Trials
Register (see above).
What counts as a successful
outcome in cancer care?
Hannu Tavio, PROPO, Finland
Discussion about the topic mentioned in the
heading has been raised in a LinkedIn group
called Beat Prostate Cancer. Simon Crompton,
English health journalist, has also handled the
same topic widely and to his credit including
patient stories in an article in May-June issue
of Cancer World.
In the beginning of his article he summarizes:
“Every patient wants to be cured. But a
culture that defines success as a “cure”
condemns many patients and doctors to
failure. Should the cancer community be
looking to broaden the concept of success to
better reflect how well care plans deliver the
best possible outcome tailored to each
patient’s personal priorities?”
Are the organizations seeing the topic from a
patient’s perspective often left out from open
discussion? Or is it seen as a medical question
that is purely a professional matter for
doctors and researchers to speculate on? It is
natural that treatments are thoroughly
discussed between patient and doctor when
planning and deciding about the treatment.
The question however is whether the “silent
thought” of cure being the only successful
outcome in cancer care living in community
gives justice to the patient. Or does it even
compare to general treatment knowledge of
today? From a broader perspective I think it is
relevant to question if the persistent thought
of relating cancer and death to each other is
based on this same definition of successful
outcome – cure.
My personal experience is that still, 15 years
after getting a cancer diagnosis, people
generally think that treatments must have
cured me, that I’m completely free from
cancer cells in my body.
Simon Crompton:
“What does treatment ‘success’ mean in
cancer? Does it only mean curing the cancer?
Or controlling it? Extending life? Or providing
a good quality of life, even for a short time?
How we define success and failure is
important because it has a profound impact
on the goals that patients and their doctors
set themselves and the experience of the
cancer journey. Developing a shared under-
standing of what success means is also
essential for informed public debate about
the value of different interventions in
different settings and how to get the best
outcomes from the resources we have.”
Active surveillance and basic medical
treatment
New situations and answers related to the
topic of this article have appeared at least in
Finland when talking about prostate cancer
today. When a man with newly diagnosed
prostate cancer gets a briefing and makes an
agreement of moving into active surveillance,
actual curative treatments aren’t necessarily
even “looked for”. It may be very simply said,
but for most of these men it is true that if and
when active surveillance is enough for the rest
of their life it means that this treatment is a
success without curative elements.
It is also a fact that specified diagnoses based
on better knowledge of the disease itself offer
a possibility to treat with blocking hormones
or other basic medicines without curative aim
not only prostate cancer in an early phase but

also when the disease is advanced. The main
objective is to stop or slow down the
advancement of the disease. It wouldn’t be
fair to patients and attending doctors if it
were claimed that this third kind of treatment
doesn’t include elements of success for the
majority of patients.
Chronic cancer
It is all more often that prostate cancer is said
to be chronic for many patients. Either, as said
above, it is not seen as necessary to start
curative treatments or radical treatment with
curative aims which haven’t reached the
objective. The disease becoming chronic after
radical treatment means that the disease
can’t be cured with current methods, but it
can be controlled and by that way it is
possible to give the patient more years, even
decades to his life. Not to forget the factor of
the quality of life. Here is one big group of
cases, where we can talk about different
levels of successful treatments and once
again, without a definite cure. These
treatments offer patients and their close ones
hope and tell them that the future is not
depending only on the cure. Treatment has
been planned carefully and it has succeeded
in many sectors. However, it is realistic to
understand that many medical treatments still
have limited time efficacy but finally the
effect is very individual.
Change of treatment approach
The question of cure is not necessarily the
most important aspect from the patient’s
point of view, not even when the man has an
advanced, metastatic prostate cancer. This is
seen in many patient stories.
Negotiation is challenging when patients,
especially aged ones, experience that best
success, often in the form of a radical
treatment, is not necessary. This is often
related to situations where latest, approved
cytotoxic or other drugs are not used or
where active treatment is stopped. These
events are commonly associated directly but
incorrectly to increasing and tightening cost
awareness. You can hear prostate cancer
patients and their close ones say that they are
forbidden to get a beneficial “drug cocktail”
which would offer them some more valuable
weeks or months to their life. Not because
they have unrealistic expectations but
because they feel that they are seen as less
valuable to society.
It may feel all wrong that stopping an active
cancer treatment could in any way be a
successful care. It is however a fact that this
kind of solution works for the best for a
patient who would get severe adverse events
or side-effects from treatments which
wouldn’t even help in the fight against the
cancer anymore. It is of course essential for
the patients and their close ones that all
needed information is given and that they
understand why the treatment approach has
changed. From the patient’s point of view the
basis for a successful treatment is that the
patient in all different stages of his sickness
knows, what the aim of each treatment is. In
that way there will not be doubts about being
left alone but instead it creates hope that
palliative, symptom based and pain relieving
treatment gives the patient an active life as
the situation allows. It is important that the
patient is helped to understand that the
doctor can do something for him even if a
cure is not possible.
Sometimes you hear relatives and friends say
that it is not just buying time for the patient.
Instead one month can be worth as much as
one year for the close ones as well as for the
patient if it has become obvious that life
expectance has become limited.
Treatment in the end
At the moment terminal treatment is widely
discussed and it is justifiable to say that
terminal care is one form of successful
treatment. Nowadays experts openly describe
how well organized terminal or hospice care
means dignified, painless death when it’s
successful. It also serves relatives and friends

in their deep sorrow. It is extremely tough for
the close ones if their family member has died
because of unsuccessful late stage treatment
even if there had been long and successful
treatment periods before that. By discussing
and getting appropriate information from
doctors and other professionals this kind of
unfortunate situations can be prevented.
What becomes of Finnish prostate cancer we
can say the following as an answer to the
question in the heading: a successful outcome
in prostate cancer care is a chain of treat-
ments based in high know-how. It starts from
the diagnoses, continues to different carefully
considered treatments and ends in follow-up
or, if the situation requires, high quality
terminal care.
Sources:
Hannu Tavio, PROPO Magazine 1/2014
Simon Crompton, Cancer World Magazine,
May/June 2014
Louis Denis & Hannu Tavio
An End to Second Class Citizen-
ship (continued)
Malcolm Duncan, Europa Uomo Italy
The present article is based on the replies
kindly supplied on time by 19 member
associations whom we most sincerely thank,
and is a follow up on the article which
appeared in the previous number of the
Newsletter. That means that 4 replies are still
missing.
The answers received unfortunately
confirmed my personal fears, expressed in the
previous edition. This can be clearly discerned
by the accompanying table.
The principal shortcoming in the treatment of
prostate cancer is the common unawareness
of the male population of the risk of getting a
prostate cancer and also of many GPs
(General Practitioners or family doctors), who
frequently limit the request of a PSA
screening to a desire communicated by their
male patients or, very often, by their wives or
companions for life.
Something needs to be done urgently to
address this important health issue, also in
view of the fact that it is expected that, due to
increasing longevity, prostate cancer
incidence will double in the course of the next
twenty years and the mortality rate to even
treble. That is notwithstanding medical
advance. See the attached table for details,
country by country, provided by the national
associations of 19 Europa Uomo associations.
Table: Male and female screening testing for cancers
AT BE CZ DK FI FR DE HU IE
Women
Womb Yes Yes Yes Yes Yes
Breast &
Colon
Yes Yes Yes Yes Yes Yes Yes
(breast)
Yes Yes
Periodically Yes Yes Yes Yes Yes Yes Yes
From what
age
40 50 45/45/55 50 50 50-69 45-65 55
Is it free Yes Yes Yes Yes Yes Yes Yes Yes

Men
Prostate No No No No No No No No No
Periodically
From what
age
Is it free Yes No Yes Yes Yes Yes
(GP)
No No Yes, only
with a
means-
tested
Medical
Card
LT NO PL PT SK ES SE CH NL UK
Women
Womb Yes Yes Yes No Yes Yes* Yes Yes
Breast &
Colon
Yes Yes Yes No Yes Yes Yes Yes Yes
Periodically Yes Yes Yes No Yes Yes Yes Yes Yes Yes
From what
age
Breast/colon:
>50
Womb: >25
Colon: >50
60+ 40 45-50 40 Womb: 21
Breast: 50
Breast: 50
Colon: 60
Is it free Yes No Yes No Yes Yes Yes No* Yes
Men
Prostate Yes No Yes No No No No No No No
Periodically Yes Yes No No
From what
age
>50 45+
Is it free Yes (>50y) Yes Yes No Yes Yes Yes No Yes Yes
(GP)
*Only if paid by the Swiss citizen or by his private insurance company as no national health system exists in Switzerland like in
the USA.
The report “Life with Prostate Cancer”, kindly
provided by our Danish friends on a study
completed by the Scandinavian countries,
was most informative. It involved almost
7,000 patients in the four countries. Many
respondents were totally unaware that it
may be hereditary. Nor were they aware of
common symptoms such as backache, blood
in the semen or urine, incontinence and
difficulty in freeing their bladders.
Lithuania and Poland appear to be the only
countries which foresee a formal invitation to
have a PSA screening test, though in many
other countries (see the accompanying table)
if asked for with their family doctor it is also
provided free of charge. The trouble here is,
once again, unawareness and, especially in
southern Mediterranean countries, a
reluctance to face facts often until it is too
late to achieve a total and durable cure. This
is also probably the motive for a relatively
high mortality rate in a few European
countries.
However, in the case of Switzerland, there is
the problem that there is no public health
system, and health care functions, as in
America, by means of private health
insurance policies where costs and coverage
may greatly differ and where franchising may
be quite high and easily exclude the cost of a
PSA test.
All the above seems to indicate that we
should devote some time in our next issue to
the development of Multidisciplinary Centres
across Europe, and where patients are more
likely to be well advised on the best
treatment to follow as they meet and discuss
their problem with a team of medical experts
in many connected fields and, participate in
the final decisions as to the most appropriate
treatment in their personal case.
ANY SUGGESTIONS ARE MOST
WELCOME
E-mail to: europauomo@skynet.be

Review of Project Committee
Performance
Status of achievements
Gunter Feick, Project Committee Chairman
GOAL 1: COORDINATED EUROPEAN
RESEARCH PROGRAM WITH PATIENT
ADVOCATE REPRESENTATION
Achieved:
- EUomo representative accredited to EMA
for participating in clinical trials´ reviews.
- Over 400 MEPs signed DECLARATION
80/2010 COORDINATED CANCER RESEARCH.
- EAU secretary general, Prof. Abrahamson
agreed on EAU becoming the hub for
coordinated prostate cancer research and
work with EUomo.
- EUomo and member organizations signed
ALL CLINICAL TRIALS REGISTERED/RESULTS
REPORTED petition.
- 3 April 2014 petition turned into EU law.
Information on clinical trials/results is now
publicly available in new European Medicines
Agency European Clinical Trials Database
(EudraCT): https://eudract.ema.europa.eu/
GOAL 2: THERAPY GUIDELINES IN ALL
EUROPEAN STATES BASED UPON THE LATEST
EVIDENCE
Achieved: EAU guideline for treatment of
prostate cancer updated with EUomo input.
Continued EUomo input for updates assured.
GOAL 3: CENTERS OF EXCELLENCE IN ALL
EUROPEAN STATES
Achieved:
- EUomo initiated and contributed to the
preparation of a concept paper, delineating
requirements for prostate centers, published
in the European Journal of Cancer.
- EAU joined prostate centers work group
(PCWG)
- EUomo is member in PCWG
- Prostate center accreditation and design
requirements consented by PCWG.
GOAL 4: QUALITY OF TREATMENT AT WORLD
TOP LEVEL IN ALL EUROPEAN STATES
Achieved:
- International Consortium of Health
Outcome Measurement (ICHOM) consented
Patient Related Outcomes (PROs) for
localized low and medium risk prostate
cancer:
http://www.ichom.org/wp-
content/uploads/2014/04/DCUM_LPC_KL_04
0914_website.pdf
- Report on health outcome measurement by
ICHOM work group and patient statement
published in medical journals this year. Work
financed by Movember.
- ICHOM PROs added to prostate cancer
treatment guidelines and reporting
requirements for certified prostate cancer
centers, Germany.
- ICHOM PROs for advanced prostate cancer
are in progress.
Prof. Denis will be patient representative for
Europe.
GOAL 5: NEW SUPPORT GROUPS IN NEW EU
STATES
Achieved: Poland based regional office
established.
Group picture GA EUomo, London, June 2014

The psycho-oncological
nightmare of prostate cancer
Dr. Tania Estapé, psycho-oncologist, FEFOC/
Europa Uomo Spain
A cancer diagnosis
is a stressful event
in the life of any
person associated
with various
difficulties such as
anxiety,
depression, fear (of
recurrence, uncertainty about the future
etc.) as well as physical problems involving
the effects of treatment. In the case of
prostate cancer there is a high probability
that treatment significantly impacts the
quality of life of patients. We mainly refer to
the chances of urinary incontinence and/or
dysfunction erectile, but also others, such as
loss of libido, gastrointestinal effects and
mood disorders.
The psychological impact due to prostate
cancer adds, then, two aspects: those
associated with cancer in general, and those
specifically related to site and treatment.
- As for the psychological impact of cancer,
these are due to the usual attitude of people
that attribute a meaning of death, stigma and
uncertainty, its causes and possible cure.
Disorders more frequent in mood are anxiety
and depression. There may also be periods of
insomnia, anorexia and interruption of daily
activities as well as persistent fear about the
possibility of relapse.
- Prostate cancer means, for the purposes of
treatment, a threat due to the perception of
damage to men’s self-image and masculinity.
This can seriously affect relationships and
self-esteem. Possible problems such as
incontinence and sexual impotence may
harm a patient’s self conception as a man. He
may be filled with shame and discomfort. If
he is still an active worker, he may have
functional difficulties at work, for example,
having to urinate often, with all that this
implies, added to the fear that workmates
realize about it. If no longer employed, he
may have an emotional disturbance and wish
to retire (with all that implies in our society
for a man). Physical losses due to prostate
cancer may have a high repercussion
especially on men who feel old and useless as
he has stopped working.
Moreover, we should add important aspects
related to the medical situation but that may
increase anxiety in patients:
- The choice between different treatment
alternatives: the possibility of more than one
potential therapeutic strategies (medical
decision-making), with different side effects
which have a double impact on the welfare
of the patient. On the one hand, it certainly
adds anxiety on whether he has chosen the
best option. Moreover, if the patient is well
informed by the physician, it may help to
increase the feeling of control, which is very
important, especially in males. In some cases,
in which information has not been reported
or has not been done properly, patients
experience an increase in the level of
distress. It is very important that the patient
has the feeling that there is a high degree of
communication between him and the doctor.
- Knowledge regarding tumour markers:
Increasingly, patients with cancer receive
information regarding numbers, and control
when the numbers indicate that something is
wrong. The prostate cancer patient is usually
informed about the PSA and when waiting
results or if they increase, even if it is a
minimum increment, he may be distressed.
This is called the "PSA anxiety" and can
become a real psychological problem. There
are patients who do graphics with their PSA
and others go to different analysts to
corroborate results. In English, with some
kind of humour, to indicate the source of
distress that can generate this analysis which
is called the Patient Stress and Anxiety

(Stress and anxiety of the patient) or the
analysis that Promotes Stress and Anxiety. It
is so important that there is a questionnaire
to assess specific anxiety due to PSA.
Prostate cancer can be a major challenge in
the life of the affected male. It may impair
many aspects of the patient’s life, both
personal and relative to social activities. Thus
it may be important to receive psychological
support, individual or with a couple, when
resources common in the patient's life, are
not sufficient. One way to try to prevent a
high degree of discomfort and distress of the
patient is to maximize the level of
information about the disease, treatment
and side effects. A good communication with
the doctor is one of the keys to achieving
peace and a sense of control by the patient.
The establishment of therapeutic goals is
complicated by problems presented by the
patient. Regardless of the specific demand
expressed they affect, in general, and their
most frequent reasons for consultation are
related to sexual issues, couple relationships
and adaption to a new physical situation. PSA
anxiety is something recognized but usually
there are no specific demands about it. The
patients with prostate cancer convey their
fears and problems and very specific
psychological aspects of health and more
often physical ones too.
An example of this is the great interest of
these patients for all the information
regarding healthy lifestyles. In this sense, the
work of the psychologist should include
psycho-educational intervention as a
therapeutic strategy. The group modality is
usually the most used by the special
connotations of men and prostate cancer.
Support groups in prostate cancer have been
most recently formed within the oncology
field. However, once treated, it must be said
that their constancy and interest to remain in
the group becomes very high.
Definitely prostate cancer is a major goal for
its increasing number of cases, and by the
side effects of treatment thereof and in the
quality of life of the patient and his partner.
FEFOC, which is the Spanish representative of
Europa Uomo, has a sound area of work in
prostate cancer. Our group of patients’
activities began in 2000, and since 2008 we
have a specific web devoted to prostate
cancer (www.cancerdeprostata.org) available
in both the Spanish and the English
languages. We have an individual psycho-
therapy program for patients and /or their
couples or relatives. Our last contribution to
prostate cancer has been our 16
recommendations code to patients and men
in general.
Member Reminiscences
Malcolm Duncan
Thirteen member associations have already
kindly provided details on historical
information and events. The main purpose of
this new column is to share experiences and
initiatives which help us to improve
awareness and visibility as well as funding
and maybe glean interesting events which we
could also do independently or in co-
operation with others. We have already
discovered that mutual co-operation is
already common among Poland, Slovakia and

Austria. Compliments to them. Let’s hope
others will take the hint and follow suit.
The Irish, Finnish and Spanish (FEFOC) appear
to be among the first pioneers in this battle
for life, respectively founded in 1993, 1997
and 1998 which is clearly expressed in
FEFOC’s Code on Prostate Cancer which has
been distributed to about 500 public and
private hospitals. The Portuguese association
had a most original beginning in 2004.
Initially membership was almost completely
composed of ex military (mostly from the
army).
The German BPS (Bundsverband
ProstataKrebs Selbsthilfe) appears to be the
most developed national association with
over 9,000 members and covers the entire
territory. It has a network for research and
treatment of advanced prostate cancer.
Another group named Castration Resistance
Prostate Cancer was founded in 2011 and
consists of 12 university clinics for urology.
The UK association is a little sensitive to the
term “castration resistant” which they
interpret as offensive to men who are on a
long term androgen deprivation therapy.
BPS is member of the national prostate
cancer guidelines commission insuring which
96 Prostate Cancer Centers in Germany are
committed to applying the guideline while
treating patients in a multidisciplinary
fashion and report their health outcomes by
use of identical quality indicators for
transparency and bench marking.
These institutes are still lacking or of limited
number in most of the 23 national
association members of Europa Uomo, but
the situation should improve in the near
future. Other indicators for international use
have also been devised in co-operation with
ICHOM and used in the case of low risk
prostate cancer.
As previously affirmed general awareness of
this deadly disease is still scarce in many
countries, which tends to aggravate mortality
rates. Visibility is another closely related
problem. This calls for action by Europa
Uomo but together with local national
associations and not independently, without
any involvement or knowledge by the local
association, as was reported by one member
country, which led to some embarrassment
on the part of the interested association.
This shyness defect is most common in
Mediterranean countries where men are
reluctant to consider let alone talk about the
danger of getting prostate cancer. However
Ireland also denounces a similar problem.
Though the number of diagnosed as suffering
from prostate cancer is thought to have
increased, recourse to the HelpLine phone
service has surprisingly declined and the
question is at present being discussed on
how to overcome this setback.
One of the most dynamic national
associations on the question of promoting
awareness appears to be Slovakia.
Apart from their co-operation with Gladiator
in Poland, to which Austria is also active, they
edit a website which includes hundreds of
educational and scientific articles and they
also dispose of hotline phone networks and
internet for those who prefer to
communicate their questions and doubts via
email.
They have also co-operated with various TV
channels and the ONKO magazine to favour a
better public knowledge of prostate cancer.
Lastly they have established contacts with
European MEPs in the hope to reduce the
cost of health care drugs for prostate
patients. It is a pity through the lack of a
Newsletter at that time, they were not
involved early on in the very worthwhile “Call
for Action” venture. Their latest initiative has
involved the media and promotion even in
hospital ambulances.

Finland, with 1,800 odd members, a
remarkable achievement for such a small
population, is very active with regard to the
problem of awareness. It organizes regular
open lecture and provides further
information on request. Its success is also
partly thanks to its close co-operation with
the Finnish Cancer Society. It publishes 4
annual magazines as well as Newsletters,
organises public meetings and road shows
country wise. They have established a very
good slogan to help their awareness “Less
cancer – more Life!”. With the same
intention, the Austrian association has
recently presented a book named “Everyday
life is precious”.
Both Anamacap in France and the Slovakian
association have achieved official
recognition. In France by means of the label
“Institute of Public Interest” and in the
Slovakian Republic by the Ministry for the
Interior (2012) but, unfortunately, at least
until now, they have achieved no State
financial aid.
The Czech Republic recently achieved
increased awareness by an original Billboard
campaign on the main roads near their
capital Prague and Brno.
Another way of attracting and maintaining
interest and contacts is by organizing regular
member meetings. This was started in
Belgium by 3 monthly meetings named “Café
Santé”, where patients and doctors can
discuss common problems. One possibly
disappointing factor is that no excellent
quality Belgian beer is served. They also
produce a magazine called “PROSTAATinfo”
with a circulation of 4,000 copies mainly
distributed in Belgian hospitals and managed
by its Scientific Committee headed by Prof.
Van Poppel. France has a similar initiative in
mind for the near future.
The Slovakian Republic association has
established a series of clubs and is now
considering the use of internet in
combination with their Helpline phone
service. Previously the internet and email
alternative was thought as of little use due to
the age of most patients and their limited
predisposition to Internet. Now however
they realize that the situation has radically
changed and many men are often reluctant
to discuss their prostate problems over the
phone to an unknown spokesman or
spokeswoman.
The Irish association, MAC, is located in
Dublin and was established in 1993, mainly
thanks to the effort of Tom Hudson, later EU
chairman, and is managed by a 10 member
Steering Committee, which in view of a
limited membership of about 250 due to the
size of its population, appears a more
democratic way to conduct such an
important association, as opposed to a mere
7 member board for Europa Uomo which has
23 country association members. However
that is a personal opinion based on previous
professional experience in an international
sphere. It regularly organizes hospital visits
on the invitation of nurses.
One of the chief problems is developing
regional centres with local activities. This is
an ongoing problem in Italy. The most
successful cases appear to be Germany (250),
followed by the United Kingdom which at
present has some 50 local groups of patients
and their families representing some 15,000
national members. This was surely helped by
the decision, after much thought, of merging
4 national groups to form a Prostate Cancer
Support Federation.
Thanks to Prostate UK and their activities, the
Imperial College of London has assured them
financial support since 2011, giving them
£60,000 in annual grants. In 2011 they also
agreed to a pay for a CEO for the next 5
years. In 2011 they changed their name to
Tackle Prostate Cancer UK” which was
thought would acquire a more positive public
reaction and support. One very original event

promoted by EU UK.
Together with other Cancer associations
there is a walk called “A Shining Night Walk”
already in its fourth annual edition held in
the historical centre of London beginning
near Tower Bridge. Participants can choose
between doing the full walk (26.2 miles) and
the more modest walk of only 13.1 miles).
Since it beginning in 2010 this initiative has
raised £13.5 million to help cancer research
in the UK and this year is expected to raise a
further £4.7 million. Worth considering?
Austria has a similar initiative but at present I
have no information on its achievements.
PLEASE VISIT OUR WEBSITE
www.europa-uomo.org
AUSTRIA
„Selbsthilfe Prostatakrebs“ Austria: 2011
Reorganising of the Board of SHP. Reduction
of members from 9 to 6. Chairman, Secretary
and Cashier plus one deputy each
2011 Reorganising of website
“www.prostatakrebse.at” and official co-
operation with the “Austrian Assoziation of
Urologists” (bvU Berufsverband der
Österreichischen Urologen).
2014 Presentation of the book „Everyday Life
is precious” from Astellas in June 2014.
Beginning of cooperation with the “Academy
for Sexual Health”, press conference in June
2014.
Preliminary studies of our project of the book
“Prostate Cancer” (Prostatakrebs) in German.
In cooperation with the Urological
Department of the Medical University in
Vienna, the Austrian Association of
Urologists.
Re-establishing of the Upper Austrian SHP
prostate cancer patients society.
Selbsthilfe Prostatakrebs
www.prostatakrebse.at
BELGIUM
The Belgian EUomo member, is now called
US TOO Belgium (official) – Wij Ook (for the
Flemish) – Nous Aussi (for the French
speaking population) and Wir Auch (for the
German speaking part).
Started in 2002 by Jack Pais as an
international member of US TOO USA. The
goals included awareness of the prostate
diseases, patient information and education,
and access to specialized and cost-effective
care.
Over the years expansion primarily in the
Flemish region led to subgroups Wij Ook in
Antwerp, East and West Flanders, and
Mechelen.
For patient information we started our “Café
Santé” programs. A scientific, social meeting
for the members. However no beer is served
on these 3 monthly meetings. Out of these
meetings came a traditional European
prostate cancer patient day on the 3rd
Saturday of September followed by a Walk
for Cancer on the following Sunday.
We edit a patient members magazine
“PROSTAATinfo”, mainly composed of
contributions from professionals especially
our Scientific Committee headed by Prof. H.
Van Poppel and our members. The 4,000
distribution goes to all urological
departments in the Flemish hospitals and
personal, that is providers of prostate
management in the health care.

Our latest project involved awareness of
exercise as a major contribution to health for
prostate cancer patients. The program was
developed with the support of UCL (Prof. B.
Tombal) and went from MyCoach to a
European program “Feel+”.
We hope to continue this ambitious program
with our Board, different committees and
especially the response of each member.
Each one of us feels the need and the
obligation.
Activities in Urology Week:
1. Symposium “Prostate Cancer: actual
insights” (September 13)
2. European Patient Day symposium
(September 20) with the support of the
Belgian Society Urology, university hospitals
and Wij Ook.
3. 60+ walk against cancer (September 21).
Foot rally, lunch and prizes organized by the
Oncology Centre Antwerp – Wij Ook.
Us Too/Wij Ook Belgium
www.wijook.be
CZECH REPUBLIC
Europa Uomo CZ increased public awareness
about prostate cancer significantly by means
of its website with a lot of educational info,
online advisory office, Billboard campaigns,
press conferences every year on the occasion
of Urology week, as well as lay awareness
brochures.
Activities Urology Week:
Europa Uomo CZ
www.europauomo.cz
DENMARK
The Danish Prostate Cancer Association
PROPA
PROPA was founded in 2000 and reached a
membership of approx. 50 members in the
first year. The association developed over the
subsequent years and has now reached a
membership of 3,400.
PROPA is divided into six regions and has a
total of 18 local groups distributed over the
country. The association is governed by a
national board consisting of 10 persons – 6 of
these are the chairmen of the regions, one is
the representative of the relations of the
members and the remaining 3 are chosen
from the total membership at the annual
national meeting, which is the top governing
body of the association. There are each year

approx. 100 meetings for the members of
PROPA around Denmark for example with
talks by leading medical specialists,
dieticians, physiotherapists etc.
In 2014 PROPA has chosen patient
involvement as a general theme. It was used
at the Citizens’ Meeting on the island of
Bornholm (as covered in Newsletter No. 1),
at the national meeting of the association
and now in the Prostate Cancer Month
September as a part subject in the five theme
meetings held in PROPAs regions.
During the autumn six family runs are
arranged at golf courses and other pleasant
landscape sites around the country with a
view to create attention about prostate
cancer and the association and to collect
money for the activities of PROPA.
PROPA also arranges a Master Class for the
extended management of the association,
where the top professional specialists
provide contributions.
In November PROPA cooperates with
MOVEMBER in order to visualise the prostate
cancer disease for the Danish population.
PROPA’s vision – the goals PROPA would
like to reach are:
 That the treatment of prostate cancer is
characterised by a correct and safe
diagnosis understood by the patient, and
the best possible individual treatment
ensuring optimum quality of life for him
and his family.
 That PROPA has general recognition,
support and success in its work.
PROPA’s mission – the overall subjects
PROPA will deal with:
 PROPA works as a patient association for
the best treatment and support of
prostate cancer patients. PROPA does
this by:
- Influencing the health political agenda
towards the best possible treatment of
prostate cancer.
- Disseminating general knowledge about
prostate cancer and its treatment and
thus removing the taboo about the
disease.
- Working for improved quality of life for
patients and their relatives.
- Working to ensure that diagnosis,
treatment and rehabilitation – regardless
of address – fulfils the highest inter-
national standards.
- Working to achieve that at least 25% of
prostate cancer patients are members of
PROPA.
- Working to achieve that practicing
doctors are seriously aware of the
danger signals of prostate cancer.
PROPA’s value basis – what PROPA wishes
to be known for:
 PROPA wishes to be widely
recognized for its informative and
serious work by members, health
authorities and society in general.
Prostatakreftforeningen - PROPA
www.propa.dk
FINLAND
Finnish Prostate Cancer Association - PROPO
Founded: 10.10.1997
Organisation:
President: chairman of board,
Matti RJ Niemi
Board:
3 patient members, 2 physicians, 1 nurse
and their personal assistants.
Executive Director, Irma Lehtimaja

Address:
Finnish Prostate Cancer Association,
PROPO
Saukonpaadenranta 2
FIN-00180 Helsinki
E-mail: irma.lehtimaja@propo.fi
Members:
Currently 1,800 all over Finland
Prostate cancer patients and relatives
Physicians and nurses related to prostate
cancer
Supporters, persons, institutions, etc.
Mission:
Link advocacy organisation for prostate
cancer patients
Distribute data, produce information and
increase common awareness of prostate
cancer
Means:
Information, education, support services
Organize meetings for prostate cancer
patients and their relatives
Follow and promote research and
information related to prostate cancer
Make initiatives to improve the situation
of prostate cancer patients
Increase common awareness of prostate
cancer disease with open lectures
Give statements when needed
Collaborating with:
Member organization of the Cancer
Society of Finland as well as other
member organizations of Cancer Society
of Finland
State and local authorities and other
health organizations are also involved.
Active Member of EUROPA UOMO and
ECPC (+ WWPCC)
Taking part in regularly organised Nordic
groups
Permanent actions:
Publishes yearly 4 magazines and
newsletters for members
Yearly large meetings and road shows
with Supporters.
Small groups are also organized.
Key issues today:
Strengthen finance, campaigns and public
support
Develop organisation and work of the
board and its efficiency
Analyse and take benefit of 4 different
covering members’ inquiries and studies
Publishing of latest made in 2014
Suomen eturauhassyöpäyhdistys ry
Finlands prostatacancerförening rf
Finnish Prostate Cancer Association
PROPO
Membership growth 1997-2013
Slogan: “Less cancer – more life”
Finnish Prostate Cancer Association - PROPO
www.propo.fi
FRANCE
Anamacap was set up in 2002 with the
support of 3 Urology and Oncology University
Professors. Anamacap and got the label of
public interest from the French authorities as
from April 2010 (highest level for an
association).
Anamacap has 2 branches: a Scientific
Advisory Board including high level
urologists, oncologists and radiotherapists on

one side and a Board including 12 volunteers
acting and managing the association.
In 2014, Anamacap has more than 1,200
members.
Revenues are coming from members' fees
and subsidies by laboratories and private
persons; anamacap does not receive for the
time being any subsidy from public
authorities.
Anamacap General Assembly is held every
year on the third Saturday of the month of
September. In addition, some information
meetings are held in France main cities (3 or
4 per year).
Anamacap makes available an information
line by phone every morning (except
weekend) and provides a forum and a Q and
A service through its website (only for
members). A newsletter should be launched
very soon now.
Anamacap had several meetings with the
highest Health Authorities in France
(including French Health Minister) on
important issues (the approval of new drugs,
screening, etc...). Anamacap is the leading
association in France as regards Prostate
Cancer Issues and Patients Advise. We are
eager to attract more volunteers in order to
develop additional actions all over French
Territory.
1. Participation on 15/09, a Prostate Cancer
Awareness Day at the Bichat Hospital in Paris
° a booth was set up
° a brochure and information were
distributed to passers-by
° Projections of small video films (anatomical
sheets, treatment of prostate disease, expert
advice, micro sidewalk ...)
° Press interview with Prof. Ravery (Head of
the Service)
° Musical entertainment by a group led by a
physician, a game with questions and
answers on prostate issues to win a lot of
gifts
2. The organisation of a scientific conference
for the members of Anamacap on 20/09
° Update on focal treatments and their
indication (45’), by Prof. Olivier Cussenot,
Urologist/Oncologist at TENON Hospital,
Paris (AP-HP)
° A speech on “The Management of prostate
cancer for older men” (45’), by Prof. Pierre-
Mongiat Artus, Urologist at Saint-Louis
Hospital, Paris (AP-HP)
° Therapeutic education and oral chemo-
therapy for prostate cancer (45'), by Dr. Gilles
Galula, Oncologist at TENON Hospital, Paris
(AP-HP)
° Introducing the web-platform for decision
support and patient education on prevention
and prostate cancer treatments” (10’), by
Prof. Olivier Cussenot
° Nutritional and medicinal supplements in
addition to hormonal treatment or
chemotherapy to reduce their side effects
(10'), by Prof. Olivier Cussenot
3. Giving a public lecture on 22/09 in Rennes
° Active Surveillance and the presentation of
the web-platform for decision support”
° Support of prostatic hypertrophy and
avoiding dysfunction before curative
treatment of prostate cancer
° New treatment for localized prostate cancer
Anamacap
www.anamacap.fr
GERMANY
The Bundesverband Prostatakrebs Selbst-
hilfe e. V. (BPS) has subscribed to goals and
reports achievements as follows:

Goal 1: A medical network of competence for
treatment and research of advanced prostate
cancer.
Achievement: The German Working Group
on Castration Resistant Prostate Cancer
(GWG-CRPC) was founded 2011 consisting of
12 university clinics for urology. Specialized
treatment for patients with advanced
prostate cancer is available with research
performed simultaneously and coordinated
within the GWG-CRPC.
Goal 2: National diagnosis and therapy
guideline updated regularly in accordance
with latest evidence base medical
knowledge.
Achievement: Third guideline update since
2011 completed with of 3 BPS members in a
guideline commission. Patient guideline/
information based on the medical/scientific
guideline completed with BPS contribution.
Goal 3: Quality indicators for measurement
and comparison of prostate cancer treatment
Achievement:
a. Indicators have been defined and are
applied in 95 certified prostate cancer
centers.
b. Identical indicators have been defined for
worldwide use by the international
consortium for health care measurement
(ICHOM) for the low risk prostate cancer
Goal 4: Treatment in certified, specialized
prostate cancer centers.
Achievement: Since 2010 95 concept
development centres have been accredited
and treat patients according to the
guidelines, measurements and quality report
treatment using identical indicators.
Bundesverband Prostatakrebs Selbsthilfe e.V.
www.prostatakrebs-bps.de
IRELAND
Men Against Cancer (MAC)
Prostate Cancer Support Group
Organisation
The group is based in Dublin with members in
a number of other large towns and cities.
It is, as far as we know, the only group
dedicated solely to supporting men
diagnosed and treated for Prostate Cancer, in
the Republic of Ireland, although there are at
least 60 general Cancer Support groups.
The group is run by a Steering Committee of
ten members elected at the Annual General
Meeting in May each year.
The Committee elects the Chairman,
Treasurer, and Secretary.
Currently there are approximately 36
members with about half living in the Dublin
area. Overall approximately half have been
trained in Peer to Peer support.
Work
This consists of Peer to Peer telephone
support for men who are referred to the Irish
Cancer Society (ICS) Helpline Nurses.
Visits to the ICS ”Drop In” Daffodil Centres
located in the main Public and Private
Hospitals on request from Nurses.
Participation in Public Awareness meetings,
and attendance at the ICS Annual Conference
for Cancer Survivors.
Limited Fund raising as required, usually by
means of sponsored 5 km Walks.
Members also provide speakers on request
from ICS for interview on National and Local
Radio and by National and Local papers.
All MAC members who deal with survivors
have been trained by ICS professionals.
History
MAC was founded in 1993 in St Vincent’s
Hospital in Dublin, by a small group of Men
who had been treated for Prostate Cancer.
The group was affiliated in 1996 to the Irish
Cancer Society through the efforts of the
Founder members and by Tom Hudson who

was CEO of the Society at that time. From
that time the Society provided meeting
accommodation, limited expenses, literature,
and training, and continues to do so. The
group became an independent support group
in 2012, but continues its close relationship
with the Irish Cancer Society.
Future
Although the number of men being
diagnosed is increasing, the number
contacting the Helpline has decreased, and
the group is currently engaged in a role
review process to decide how to best help
men diagnosed in the future. This review will
be the subject of a special meeting in
October 2014, using the services of an
outside facilitator.
Men Against Cancer
www.menagainstcancer.net
POLAND
The Polish Gladiator Prostate Cancer
Association
Our association actually has 738 patients.
Our activities aim to unify our patient –
members and educate them of the basic
medicine rules to assure early detection and
correct diagnosis and prevention of cancer
diseases and also the necessity of prevention
testing.
Educational meetings take place in the
Institute of Oncology named after “Maria
Sklodowska – Curie” in Warsaw every month
from January to December 2014 (with
Holiday break from July to August).
In addition to educational meetings in
Warsaw we organize similar meetings in
different places in Poland(Lodz, Poznan,
Gdansk, Wroclaw, Krakow).
In the year 2014 on 10th June we organized
an extra educational meeting.
The lecturers at the meeting are the best
specialists (professors from the Medical
Academy and Oncology Institute).
A similar educational meeting will be
organized by us on the occasion of European
Urologic Week. The meeting is fixed for 14th
October at 12.00 AM in “Maria Sklodowska –
Curie” Institute of Oncology in Warsaw.
On our website: www.gladiator-prostata.pl
we presented professional information about
prostate and urinary tract cancer diseases –
diagnosis and prevention testing.
Our phone helpline 48 502 438 648 works
daily from 8.00 AM to 20.00 PM and arouses
much interest of patients and their family
members.
We have no financial support from our
government.
We prepare materials, the edition and
distribution of our bulletin “Gladiator” (an
edition every 3 months) and also the
publication of booklets, leaflets and posters.
We inform that in Poland there are
9,000/positive diagnoses per year of cases of
prostate cancer.
Mortality c. 4,000 Men/per year.
„GLADIATOR”
The Association of Patients
with Prostate and Urinary
Tract Diseases
www.gladiator-prostata.pl
PORTUGAL
Progress in the last 10 years:
- The Portuguese Prostate Patients
Association (APDP) started in 2004, and
during its first 2 years was mainly composed
of retired members from the Portuguese

Armed Forces (mainly the Army), in a number
fewer than 100. During these two first years
external activities were very limited and the
Association had time to organize and start to
plan external events.
After 2006, APDP was then able to start an
external activity mainly based on public
sessions to transmit information about the
prostate and its diseases. We were able to
cover the whole country and we performed
more than 30 sessions from North to South,
with an average of 70 to 80 patients per
session. These sessions were possible to
organize with external funds (mainly Pharma
industry) and lasted until 2009.
- In the meantime we built and published our
website and started to prepare a free SOS
telephone number, that started to be
available by the end of 2009.
- With the decline of the Pharma industry
contributions to our external activities
started to lose frequency and in the
subsequent years we were forced to limit our
public sessions to 2 or 3 per year.
- In the meantime we were able to more than
duplicate the number of Associates and we
are now close to 250.
- Due to the success of the SOS phone line we
started a second one and now we operate
one during week days from 3:00 to 6:00 PM
and a new one every day from 6:00 to 11:00
PM.
- Knowing that some people do not like to
call a public phone number, we just started a
"written" box in the main page of the
website were people may receive also writing
answers to their personal e-mail addresses.
- Due to the economic crisis, we have no new
objectives, as we are afraid of being
incapable to maintain the existing activities.
Visibility and general awareness is still a big
issue that we face every day. We were able
to obtain the membership of one public
figure (one ex-minister and ex-UN General
Assembly President), but the gentleman is
now retired and now has a very low public
profile.
We see our future with preoccupation.
- participation in two or three TV programs
- organisation of a public session on
September 25th (in the Auditorium of the
British Hospital in Lisbon): a round table with
the participation of 5 urologists (some very
famous locally) and public. The Portuguese
Patients Association (APDP) sat at the table
representing patients. The public session
ended with a questions/answers period with
free participation of the audience.
Associação Portuguesa dos Doentes da Próstata
(APD Prostata)
www.apdprostata.com
SLOVAKIA
Europa Uomo Slovakia is a civic organization
which was registered at the Ministry of
Interior of the Slovak Republic on 17
February 2006. Association is funded
primarily through donations and
contributions from individuals and legal
entities. The activities of the organization are
based primarily on voluntary activities of
members of the civic association.
As a part of a pan-European organization
Europa Uomo organizes various meetings of
experts and laymen. These lectures are
focused on medical topics, but also on
practical matters. For example, the
establishment of clubs, their work, how to
find resources for their activities, and what

kind of activities have to be developed. They
motivate members and candidates to take
care of themselves and their health more
actively. We are realizing further education
and advocacy according to the patients´
interests. We encounter patients with the
same disease and raise awareness of the
diagnosis in a language which is for ill people
short and understandable which is very
important.
The scope of our Slovak organization is
focusing on activities for which we are able
to find the resources and which we consider
as an effective communication. For example,
whereas prostate cancer mainly affects men
in older age, we must also consider other
forms of communication such as the internet,
which is not very used among older people.
Therefore, members try to send at least
occasionally printed materials about the
disease. We also invite them to the meeting.
We are trying to create good conditions for
dialogue and they can also share their
experience. As you know, for many men it is
not always easy to talk about their problems,
especially when it comes to problems with
the prostate. Such meetings may therefore
be a good start to feel that a man is not alone
with his problem, but we are here to help
them.
Our EUS has established three regional
centres and added into their ranks leading
urologists – oncologists during its existence.
These doctors do awareness actions for
people, lead professional website about
prostate cancer and its treatment, provide
personalized advice, and they are available
on unpaid telephone line or the email
address. We also work with the Slovak
Association of Urology. Its chairman Prof.
Kliment is a member of our EUS. We jointly
issued several leaflets about prostate cancer
and we published a book, which is available
for our members but also serves to urological
clinics and also medical students.
We actively promoted through the media,
ambulances of urologists and by post EPAD
2012, and 13. We took part in urological days
or days of the fight against prostate cancer.
Excellent cooperation and mutual support
has EUS with Gladiator Poland and also
Prostatakrebs Austria. Personally, we meet
every year in every state. We distribute
Gladiator magazine from Poland for our
members in Slovakia; we exploit proximity of
our national languages.
Our main effort is directed towards meeting
Manifesto EUomo.
Europa Uomo Slovensko
www.europauomo.sk
SPAIN
In 1998 we started our activities as FEFOC. To
do this our first priority was the construction,
development, diffusion and continuous
activities on the online page:
www.cancerdeprostata.org. The page is
written both in Spanish and English. We have
good penetration in South America and of
course in Spain. Many consultants are
relatives of the patients themselves. One
relevant task is to give psychological support
and research. We had a lot of public
presentations on prostate cancer. And, very
difficult, we maintain a very active support
group. The production and diffusion of
educative material is good. Our last Code on
prostate cancer has reached some 500
Spanish hospitals. Our free helpline also
works well.
Right now we are in the process of
reconstructing and radically changing our
online page in order to modernize it
widening our contacts and diffusion through
the social networks. Another important and
difficult task we are dealing with is to have
good contacts with representatives of the 15

Autonomous Communities and the two
Autonomous Cities.
The big problem is of course to find financial
support to sustain and extend our activities.
We have not until now obtained a public
figure willing to help us. This is very
important of course. Nevertheless we know
that Spanish men are very reluctant to speak
up if affected by prostate cancer. For
instance, we know three very relevant
professors of Medicine, all them prostate
cancer patients, absolutely negative when we
repeatedly asked them to openly share our
public presentations.
What's more the ambiguous relation with the
industry. We have written to Erik Briers
about this matter. As some labs told us they
are already cooperating with Europa Uomo
(central) and for this reason are not ready to
help also the National group. This is a very
important question to be solved.
FEFOC
www.cancerdeprostata.org
UNITED KINGDOM
In 2008, the UK’s four largest patient-led
prostate cancer support groups, representing
over 2,000 members and patients, formed
the Prostate Cancer Support Federations.
These organisations are: PCaSO Prostate
Cancer Network, PCSA Central England,
Prostate Cancer Support (formerly PSA North
West) and the Prostate Cancer Support
Association (PSA).
The idea of such a federation was first
mooted in 2001 when the establishment of
an umbrella organisation was proposed, that
would focus the work of the many
independent local patient-led support groups
across the country, and, through synergy,
allow small groups to harness the totality of
their resources.
Initial progress was slow, for a variety of
reasons, chief of which was the difficulty of
framing a constitution that was sufficiently
robust whilst recognising the fierce
independence of some patient groups.
However, under the wise guidance of Prof
John Dwyer, harmony was achieved and the
Federation was formally established as a
charity in 2008. Since then we have made
great strides. In particular we have
developed a modus operandi that reflects
well the aspirations of the original founders,
whilst maintaining the essential
independence of member organisations.
The existence, and subsequent development
of the Federation is very much due to the
generosity of Prostate UK (later renamed as
Prostate Action, and in 2012 absorbed into
Prostate Cancer UK). Thanks to them we
have held two conferences or workshops
every year since our Launch including an
event at Imperial College London in 2008.
They have supported us with hard cash ever
since, in particular enabling us to make
grants of nearly £60,000 to member groups.
In 2011 they agreed to funding the
employment of a Chief Executive for five
years, to lead the Charity and transform it
into the independent Voice of Patients.
In 2013, we adopted the working name of
the “Tackle prostate cancer” which was felt
to have more impact on the general public
(although to our members we are still
affectionately known as “The Fed”). We now
have over 50 member groups, who, in total,
represent some 15,000 prostate cancer
patients and their families. We have
campaigned on a number of issues with
success – a small example being that we
persuaded the National Health Service to
avoid the term “castration resistant”, which
we see as an insult to men on long term
androgen deprivation therapy. Of much more

significance is our current main thrust, the
Early Detection Campaign, which aims to
promote more widespread but also more
intelligent use of PSA as the only currently
available indication of early stage, i.e.
curable, prostate cancer.
Tackle Prostate Cancer
www.tackleprostate.org
“Strength and growth come only
through continuous effort and
struggle”
Napoleon Hill
The Hippocratic Corner
Louis Denis
I was invited by our editor to contribute to
our Europa Uomo Newsletter in the tradition
of Hippocrates from Kos, father of modern
western medicine. He lived from 460 BC to
370 BC and became famous by his success to
replace the cult of Asklepios, the Greek god
of healing, practised by priests/physicians in
temples called Asklepiera by observation and
talking/listening to his patients.
A note of modesty. This type of medicine was
already practised in China and India long
before Hippocrates and after more than
2,000 years patients still value a doctor with
a listening ear and some time. Nihil novi sub
sole. Nothing is new under the sun.
His heritage is recorded in the oath of
Hippocrates still pledged by new doctors in
medicine and a series of aphorisms
assembled in the Corpus Hippocraticum.
Next to the ethical obligations he was also a
practical man.
The oath states that he will not operate, even
not on those suffering from bladder stones,
and leaves this responsibility to experts. An
advice that should be remembered today
where learned scientists, expert in their own
field, have no problem to express their
contempt for urology not bothered by their
obvious lack of knowledge on the complexity
of the treated subject.
Let there be no misunderstanding. The
practice and art of urology especially on
diseases of the prostate experienced an
unprecedented improvement since the last
few decades but the ideal is not reached yet.
Referring back to our Hippocrates his most
popular quote is “Do no harm”. It sounds
nice but in reality it is quite impossible to go
for any surgery or cancer treatment without
harming the patient. We translate this for the
21st
century as the patient comes first before
the treatment of his cancer.
A prime example of a misunderstanding is
without doubt the rise and fall of the famous

PSA test. Is it Prostate Specific Antigen saving
the lives of thousands of prostate cancer
patients or is it the Patient Scaring Antigen
causing thousands of biopsies and
subsequent overtreatment leading to serious
side-effects as impotence and incontinence?
A recent publication of Richard J. Ablin, with
the help of a professional writer Roland
Rana, is called the “Great Prostate Hoax”.
The subtitle is revealing “How big medicine
hijacked the PSA test and caused a public
health disaster” (Palgrave Macmillan, New
York, 2014, ISBN 978-1-137-27874-6). The
book is addressed to the countless millions of
men and their families who have suffered
needlessly because of the misuse of the PSA
test. The key word here is of course the word
misuse.
Indeed the authors state that this book
concerns the MISUSE of the PSA test for
screening healthy men.
The message of this contribution is that the
PSA test, of use in prostate diseases and not
only for prostate cancer, is an excellent
biomarker of these diseases but its
interpretation requires knowledge of the
natural (treated) history of the same
diseases.
The story of the PSA molecule is fascinating.
It concerns the journey of how a
misunderstood molecule achieved stardom in
oncology, heralded as the best cancer
diagnostic marker ever and now treated as a
danger to men’s health by leading medical
authorities supported by epidemiologists,
public health specialists and yes even
associations of family physicians. As the rise
and fall of the PSA test is related to its
“value” as a tumour marker we provide a
short review of some landmarks in cancer
research, in tumour markers and finally the
PSA test.
Already Socrates made a distinction between
cancer as a benign growth and carcinoma as
a malignancy. The period of speculation
finished with observation and description by
Morgagni, Pott (chimney sweeps cancer of
the scrotum) and the great Virchow with
many others laying the foundation of
pathology and the cellular origin of malignant
diseases. The 20th
century brought us
laboratory investigations and the start of
health technology with highlights as X-rays,
tissue culture, the PAP test in 1928 as well as
the reported effect of castration in prostate
cancer by Huggins in 1941.
After describing the effect of castration on
benign hyperplasia of the prostate, a
common affection in men over 60 years, he
demonstrated with Hodges in 1940 that
castration or estrogens reduced acid
phosphatase of serum in metastatic prostate
cancer. This tumour marker, first described
by Kutscher in 1935, was further studied by
the Gutman brothers and linked to the
prostate, prostate cancer and osteoplastic
metastatic disease. The Huggins paper stated
that with acid phosphatase present in activity
greater than 10 units (King & Armstrong) in
100 cc. disseminated prostate cancer is
present.
The clinical improvement of the prostate
cancer patients improved in general by both
castration or estrogens and worsened with
the injection of androgens.
The era of androgen depletion treatment for
prostate cancer was launched and clinical
research on this subject is still ongoing in line
with our increased understanding of biology
and the natural (treated) history of prostate
cancer.
The consequence was that after World War
II, when global medical communication was
re-established, the castration of all men
suffering from prostate cancer became
routine. By the time that I took my first steps
in prostate cancer research, in 1958,
treatment included after the relapse of
prostate cancer in castrated patients bilateral
surrenalectomies and even hypo-
physectomies. These surgical interventions

are now replaced by specific medication as
abiraterone and LHRH agonists and
antagonists.
The PSA story started around 1960. A
number of investigators studied prostate
proteins, their enzymatic activities and its
metabolism. Using electrophoresis to
separate proteins in an electric field a
number of proteins were described in semen
and prostate fluid. We described the
isozymes of lactate dehydrogenase in 1961,
awarded by the AUA and the James Ewing
Cancer society, showing a shift to anaerobic
metabolism in cancer of potential use in the
diagnosis. However it was Ruben Flocks and
his team who were the first to describe a
number of antigens in benign and cancerous
prostatic tissue. Others followed and these
efforts resulted in a number of specific
proteins to the prostate found in abundance
in the semen.
Forensic specialists thought to use the
presence of these antigens to confirm cases
of rape but the characterized bands later
identified as acid phosphatase, prostate
specific antigen and much later prostate
specific membranous antigen (PSA & PSMA)
were studied as markers in clinical prostate
diseases including prostatitis, benign
hyperplasia and cancer.
A decade of confusion followed by a diversity
of names for the PSA molecule as
seminoproteine, E1, p30, PA which were all
identical. Ablin claims the discovery of PSA in
1970 but a later patent fight with Wang
before the courts of justice gave the patent
rights to Wang of Roswell Park in Buffalo,
New York for his discovery and purification of
PSA. This court case and the subsequent rise
of the PSA test as the best tumour marker in
oncology lies at the basis of the frustration of
Ablin.
Indeed the PSA test, based on the
immunologic properties of the protein took
off, after this first decade of confusion, as the
rising star in cancer of the prostate
evaluation and diagnosis. In the first decade
we could identify 58 papers in English, in the
second decade from 1990 to 2000 some
2,262 articles and from 2000 till now more
than 20,000 articles.
This enthusiasm is fuelled by the simple
observation that it is more sensitive than
prostatic acid phosphatase (PAP) in
diagnosing early prostate cancer which
remains the chance for cure where
symptoms are lacking, digital rectal
examination (DRE) disappointing and imaging
by transrectal ultrasound (TRUS) ineffective.
Recently Magnetic Resonance Imaging (MRI)
are studied for this purpose.
Still there are weaknesses in this grand hope.
After a radio-immunological test came an
enzymatic immunochemical test based on
two monoclonal antibodies against PSA. The
Hybritech-Tandem E test was first, is still
leading the field but has to compete with a
number of concurrent tests on the market
that may provide different results. The WHO
decision in 1999 provided PSA calibrations
which are now used by most companies.
Equimolarity, measuring both free and
complexed PSA in the serum with the
identified 83 PSA antibodies finally resulted
in a more or less exact measurement for
clinical use. This is the reason that any
follow-up or clinical use should be measured
with the same methodology.
PSA test results depend on the measuring
methodology and biological variations in
relation to our daily activities.
The most important weakness is that PSA is
not specific for cancer but specific for
prostate diseases. This lack of specificity for
cancer has the advantage that the PSA test is
useful in prostatitis and benign hyperplasia
where elevated levels correlate with the
infectious process or the volume of the
functional gland. There is no question in our
clinical work that a diagnosis of prostate
disease should be examined by a DRE and a

PSA test.
Unfortunately an elevated PSA test is
frequently wrongly believed to be cancer,
causing anxiety in the patient and the general
practitioner, leading to unnecessary biopsies
and overtreatment.
To remember all trauma to the prostate
(digital examination, biopsy, bicycling and
even sex) may result in elevated levels. This is
NO diagnosis of cancer and any PSA test
needs the interpretation as a possible risk of
having prostate cancer. We advise to control
an elevated PSA test after six weeks and
compare the controls after an antibiotic
treatment for infection or the congestion of
the prostate when lower urinary tract
symptoms are present or after a few days
without bicycle racing or sex. The human
prostate is not made out of plastic and can
be congested just as any other organ.
For a high risk of cancer we expect elevations
to 10 or 20 µg/cc and for a risk of metastatic
disease one expects levels of above 40 to 50
µg/cc.
The actual status of the PSA test as a tumour
marker is evident after removing the prostate
(radical prostatectomy). Here one expects 0
or < 0,2 µg/cc. A decline is also noted after
successful radiotherapy and PSA testing is
useful in the follow-up of cancer treatment
and/or relapse after treatment.
The use of the PSA test as a risk of cancer in
asymptomatic men is disputed especially
when it is proposed as a tool in population
screening. Here are serious limitations to any
test and certainly in prostate cancer
screening.
Most pilot studies were performed in
symptomatic patients with significant
positivity in prostate cancer testing to define
the level of risk. This is very different in
patients with early stage disease and no
symptoms.
The cut off value used to define sensitivity
and specificity are set empirically (the
common cut off level of 4 µg/cc was casted in
a huge retrospective study). Any screening
test will result in false positive (75% for PSA)
or false negative (15% for PSA) depending on
the results of the subsequent biopsy.
Another problem may be the prevalence of
the disease under a certain age. So a tumour
marker of value in monitoring recurrence or
relapse may be devoid of use in screening. A
third problem is the frequent presence of
indolent prostate cancers, already described
in the 1930’s in Vienna, that may never
develop into a clinical cancer. Cited figures in
the literature are from 50% at the age of 60
to 80% at the age of 80.
The assessment of a test consists of its ability
to diagnose the disease (called sensitivity
measured by the true positive cases divided
by the true positive + false negative) or
predict the absence of disease (called
specificity measured by the true negative
divided by the true negative and false
negative). Important to note if you raise the
cut off you will obtain fewer false positives
and increase specificity. However you will
miss cancers and sensitivity will be reduced.
Therefore in the clinic we rely on positive or
negative predictive value.
The problem in the use of the PSA test is not
the test result itself but the interpretation in
a clinical situation where it is used as an
excuse for repeated, excessive blind biopsies
and subsequent overtreatment.
To summarize the clinical usefulness of the
PSA test:
1. PSA is a good tumour marker but not ideal
due to limitations in sensitivity and
specificity.
2. The clinical value is clear in prostatic
diseases but weak in population screening for
prostate cancer.
3. Improvements are possible by combining
free and complexed PSA (PSA is a protease
destroying proteins and neutralized by anti-
chymotrypsine in the serum).

4. The laboratory results are variable as well
as the biological variation (the latter up to
20%).
5. Part of the PSA is occult in the serum
gobbled up by macroglobulines.
6. All derivations or measurements carry the
same lack of sensitivity for cancer.
So together with Ablin we can conclude that
the PSA test is useful in our clinical work if
correctly interpreted in a particular situation.
Among particular situations we note:
1. The PSA test increases in the aging process
due to the development of hyperplasia.
2. A cut off of < 1.0 µg/ml at the age of 45
years seems to guarantee a decade without
cancer.
3. There is a correlation with prognosis of
cancer (very high values carry poor
prognosis). There is no relation to the grading
of cancer tissue but to the volume of the
cancer.
4. The generalist physician sees usually one
patient with prostate cancer diagnosed in
any year of practice. It is impossible to
demand from him a clear view of the
complexity and paradoxes in the natural
history of prostate cancer.
5. Hereditary prostate cancer is rare but
disease present in father and brothers and
breast cancer in mothers should guide to
early diagnostic action.
The case for screening following evidence-
based studies for our male population has
been published in European Urology titled
“Early Detection Prostate Cancer: EAU
recommendations”. This article was
communicated to the membership. If you
missed it, please check A. Heidenreich et al.
European Urology 64 (2013): 347-354 or
available from the secretariat.
The everlasting quote from Whitmore
remains the mantra of the urologist (1994).
“Appropriate treatment implies that therapy
be applied neither to those patients for
whom it is unnecessary nor to those for
whom it will prove ineffective. Furthermore,
the therapy should be that which will most
assuredly permit the individual a qualitatively
and quantitatively normal life. It need not
necessarily involve an effort at cancer cure!”
On prostate cancer we can conclude with the
published results of a 13 year follow-up on
260,000 participants in the European
Randomised Screening Study for Prostate
Cancer (ERSPC). Launched in Antwerp in 1991
with a number of pilot studies on DRE, TRUS
and PSA > 10 µg/ml the official start of the
study in Rotterdam in 1994 was quickly
followed by centres in 8 countries. This mega
study, not a meta-analysis of different
studies, showed a decrease of mortality of 20
to 40% (40% in Sweden) and decrease of
morbidity with a clear shift in the diagnosis to
localised disease in registration of early
cancer. Unfortunately we were also the first
to note the overtreatment of small, early
cancers that can be evaluated over time and
only treated if the risk of progression
becomes intermediate or high. These low risk
cancers, about 50% in a screening setting,
show small volume < 0,5 ml, low Gleason
score (Gleason score 6 = 3+3 grade almost
never metastasize) and a serum PSA < 10
µg/ml. Based on the ERSPC results the gain in
mortality reduction is overshadowed by a
40% overtreatment with common side-
effects as impotence and incontinence.
Population screening should aim for high risk
potentially lethal prostate cancer and avoid
overtreatment of the “benign” forms of this
disease by careful monitoring.
This advice in treatment, called active
surveillance, is different from watchful
waiting. This form of treatment decision is
based on the slow growth of prostate cancer
whose natural history to death takes usually
15 years. So any patient with a life

expectancy of less than 10 years without any
complaints of lower urinary tract symptoms
should be left in peace without any PSA test.
The final advice is that we shall not allow any
further studies on prostate cancer diagnosis
or treatment with only mortality as an
endpoint. Quality of life in patients’ outcome
results and cost-efficacy must be included in
all end results of any study or trial.
The pendulum has swung towards a negative,
nihilistic conception on the value of the PSA
test especially in population screening. This is
as bad as the preceding exaltation of the test.
The problem of prostate cancer mortality is
real and each year about 70,000 men die of
the disease in Europe and a multiplicity are
lucky as most patients with advanced cancer
of the prostate still die with the disease and
not by the disease. Urologists are determined
and emotional on early diagnosis as the only
stage of cancer limited to the gland is
curable. Unfortunately the effective, invasive
treatments as surgery or radiation carry
serious side-effects as incontinence and
impotence and should be used by
experienced physicians in prostate cancer
centres.
The book of Ablin is interesting but he lacks
in depth knowledge of all aspects of prostate
cancer leading to negative conclusions on still
open questions. It is not only the PSA test
that requires interpretation but the inept
stage listing of prostate cancer in T1 a, b and
c is confusing, adequate indications for a
correct biopsy procedure, lack of diagnostic
accuracy of TRUS, new imaging as MRI and
Pet, measuring co-morbidity of patients and
last but not least informing them adequately
to share a decision in diagnosis and
treatment remain an enormous challenge.
We need more than awareness and empathy
to solve this problem to the benefit of
patients and science.
All these points will be handled in the next
article. We look forward to heated discussion
and ad-rem dialogues.
”Du choc des idées jaillit la lumière”.
EUROPA UOMO Secretariat
Lange Gasthuisstraat 35-37, 2000 Antwerp – Belgium
Tel: +32 3 338 91 51, Fax: +32 3 338 91 52
E-mail: europauomo@skynet.be - Website: www.europa-uomo.org
Publication co-sponsored by
“Did You Know?” European Newsletter contacts and email
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:
K.B. Madsen, madsenkb@mail.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; johndeclandowling@gmail.com; Italy:
Malcolm Galloway Duncan, mqi@hotmail.co.uk - europauomo.italy@virgilio.it; Lithuania: Zygimantas Kardelis, karzygis@gmail.com; Norway: Tor
Tausvik, tor@tausvik.no; Poland: Tadeusz Rudzinski, stowarzyszenie.gladiator@poctza.fm; Portugal: Joaquim da Cruz Domingos,
cruzdomingos@netcabo.pt; Romania: Toma Catalin Marinescu, rokapros@yahoo.com; Slovak Republic: Josef Blazek, josef.blazek@vsbm.sk –
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Lippuner, mlip@bluewin.ch; The Netherlands: Kees van den Berg, voorzitter@prostaatkankerstichting.nl; United Kingdom: Ken Mastris,
ken.mastris@btinternet.com.

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