Did You Know - September 2016

EUROPA UOMO / Did You Know? N°3/2016 1
The new Board looks ahead with a three year Strategic Plan:
Ken Mastris John Dowling André
Deschamps
Ekke Büchler Will Jansen Christian
Arnold
Stig Lindahl
Chairman Secretary Treasurer Vice Chairman Vice Chairman Member Member
UK Ireland Belgium Austria The Netherlands France Sweden
Contents
p.1 Editorial
p.2 Chairman’s Letter
p.3 Estonian Prostate Cancer Society
p.4 Re-evaluating PSA Testing Rates in the PLCO trial
p.5 Surge in aggressive prostate cancer cases.
p.6 The search for new markers to identify aggressive
prostate cancer
p.7 Prostate Cancer Units Network
News Flashes
p.8 Local Men Raise over £1100 for Rory The Robot Prostate
Cancer Appeal Fund
p.9 Milano Conference on Active Surveillance
p.10 The positive experience of an Active Surveillance patient
p.11 Psychological aspects in Active Surveillance
p.13 A Patient’s Dilemma
Editorial
Malcolm G. Duncan, the Newsletter Editor
The September edition of the Newsletter
appropriately opens with the Chairman’s Letter in
which he rightly praises our Dutch colleagues for a
truly remarkable annual assembly which was
organised in the city of Hoorn. The opening article is
dedicated to our new member association of Estonia
to whom we send our very best wishes.
The two principal items on the agenda regard the
partial re-election of the Board and the discussion
and approval of the first draft of a three year
Strategic Plan which aims to sensitize national and
European authorities on the constant growth of
Did You Know? – N°3 – September 2016
The voice of prostate cancer patients across Europe

prostate cancer among the male population and the
common information and medical shortcomings in
the 24 European member States which have
associations soliciting numerous improvements in the
care and treatment of prostate cancer. A disease
which is contracted on the average by one man out
of six or seven. The most important innovation would
be the introduction of early detection which, at
present, is only foreseen in 3 member countries,
though the UK hopes to be the fourth country shortly
thanks to its excellent relations with the British
authorities and the mass media. Many of the other
present shortcomings will be subsequently
overcome, above all the problem of limited
awareness. The urgency is confirmed by the recent
surge in cases of aggressive prostate cancer as
reported by The Times.
While the UK is striving to achieve early detection
with PSA screening tests, America still expresses its
misgivings on the accuracy of such screenings. On the
other hand the San Raffaele Hospital in Milan is
working on a possibly more accurate substitute for
the PSA which should also indicate whether the
prostate cancer is of an aggressive or benign nature.
This is most important in order to avoid
overtreatment and unnecessary surgery.
Three articles are in fact dedicated to Active
Surveillance including the experience of an Active
Surveillance patient. Another important novelty
regards the setting up of a Prostate Cancer Units
Network organised by ESO (the European School of
Oncology) and covering the whole of Europe. It is
thus hoped to dissuade patients from opting for local
hospitals which deal with few patients and are
probably less equipped than the specialized
MultiDisciplinary Centres now available in several
member countries. This is a common complaint in
Germany which has around 100 such specialized
centres spread throughout the country.
This edition has a number of News Flashes advising
diet care to counter-act putting on weight, especially
around the waist; the need for regular tests of
patients following Active Surveillance therapy as
lackadaisical attitudes could prove fatal; ongoing
research to obtain a universal cancer vaccine; a UK
petition recommending PSA tests to all men once
they have reached 50; and the suspension of
penalizing USA doctors for recommending Prostate
Cancer PSA screening tests.
The Newsletter ends on a positive note and the
success of three men who raised £1,100 with the help
of a robot called Rory; the re-assurance of an English
patient who underwent radiotherapy treatment; and
last but not least the humorous tale of an Italian
patient which nonetheless contains numerous home
truths, and a dilemma caused by neglecting to have
an advised early detection screening test which
however came to a happy end.
I have decided to step down as Editor of our
Newsletter as from this issue for personal motives
and wish my successor every success.
The Chairman’s Letter
Dear friends,
Best wishes to all of you: member associations, their
supporters and other addressees and, in particular, to
our new member, Estonia, which increases the
number of national associations dedicated to the
problem of prostate cancer to 24. Increases to our
membership is in fact one of our top priorities. The
meeting in Hoorn was most rewarding and enjoyable
thanks to the wonderful organization by our Dutch
member association and we thank them for all their
efforts to assure a most memorable annual assembly.
One of the main items on our agenda was the
election of the Board and we welcome our two new
members Will Jansen (the Netherlands) and Stig
Lindahl (Sweden), as well as the confirmation of
Christian Arnold (France) for a second three year
mandate. We are sorry for the loss of Max Lippuner
who decided to stand down and of Malcolm Duncan,
notwithstanding his commitment to Europa Uomo
which included the creation and subsequent editing
of our quarterly newsletter “Did You Know?” in order
to improve communications, participation in the
Project Committee which prepared the first draft of a
three year Strategic Plan for the approval of the
general assembly. He stressed the importance of
introducing “Early Detection” in all member
countries: at present in force in only 3 countries. This
urgency is confirmed by an article which recently
appeared in The Times on the surge of aggressive
prostate cancer and which is mentioned in this issue.
We hope that such a positive development will assist
Europa Uomo in its fund raising objective and
improve male knowledge of this deadly disease which
is suffered on average by one man out of 6 or 7. Last
but not least a report on the Board’s activities in the
previous twelve months was published for the first
time. It has been one of my major objectives for years
in order to improve relations between the Board and
membership.

Following the resignation of Malcolm as Editor, the
board is hoping to find a volunteer to take up this
challenge with the support of an editorial committee.
It is clear that our secretariat, Anja, and our
webmaster, Nancy, will continue to provide
enthusiastic support for the editor and his
committee.
I would like to take this opportunity to thank
Malcolm for all his hard work over the years in
producing the newsletter and to thank Max for his
dedication to the goals of Europa Uomo.
Best regards,
Ken Mastris, Chairman Europa Uomo
Our chairman, Ken Mastris, and Prof. Louis Denis
attended the General Assembly ECPC, last June 3-5,
2016 in Brussels.
Estonian Prostate Cancer Society
Dr. Tormi Soekõrv & Kalev Lehtla
Our story has a similar
beginning to many other
patient support
organisations. In 2005
Kalev Lehtla, one of the
founders of Estonian
Prostate Cancer Society
(EPCS), was diagnosed
with prostate cancer
and after consultation with oncologists decided to
have his prostate surgically removed. After being
diagnosed and before the operation he went through
a lot mentally and came to grips with being mortal
and the possibility of death. So when two weeks after
his surgery to his surprise the doctors told him he
was a healthy man and could go back to work, he was
really surprised. He did just that and decided to leave
the disease behind him.
He did so for quite a number of years, until in 2013
the disease caught up with him and had already
spread to his bones. That is when he felt that this
disease should be brought to daylight and addressed
more publicly. He was one of the first men in Estonia
to speak freely about prostate cancer and what he
had gone through. When after his first few interviews
men he did not know started calling him and asking
for support or information about the disease he
decided to create a patient organisation for people
who suffer from prostate cancer.
He found some people who shared his belief and
created a non-for profit organisation with a mission
to have prostate cancer be recognised as a chronic
disease. His wish is that other men could learn from
his mistakes and could always benefit from early
detection of the disease.
After our organisation was officially formed (during
oncology week in October 2015), we got on a roll of
different media publications. Kalev went on national
television with his story and mission and also had
many different popular magazines and newspapers
do interviews with him. Thanks to all the attention,
national television of Estonia and Estonian Cancer
Society turned to us in late November, with an offer
that we could not refuse. The annual national
fundraiser was supposed to be collecting money for a
mobile melanoma diagnostic centre, but the
organisers were worried that they might not get
enough support for the idea. So they turned to us and
offered to make the fundraiser a combined mobile

laboratory with different laboratories and rooms for
prostate cancer diagnosis and melanoma diagnosis.
We agreed to help and the fundraiser was a massive
success. As a result on 28th June 2016 two separate
mobile laboratories were bought – one for melanoma
and one for prostate cancer. The prostate cancer
laboratory has a room for taking a blood sample from
patients and in another room there is a PSA testing
machine. That makes it possible for the doctor to give
fast feedback to the patients. The mobile laboratories
were given to Tartu University Clinics which started
going around rural areas to offer diagnosing to those
people who cannot for some reason travel to bigger
cities.
Side view mobile lab
Backside mobile lab
Patient room mobile lab
With the first birthday of our organisation coming up
we feel we have had a strong start, but we do not
plan on standing still. Now we are looking for some
ways to offer PSA testing to those who do not have
medical insurance (people who are not working and
not yet retired, also many who have jobs outside
Estonia and can’t therefore use national medical
services.
We have been in the process of making a website for
a few months now and hopefully it will be ready by
our organisation’s first birthday.
Another thing we are working on is getting some
information printed in Estonian. We got some good
ideas from the Donor’s Day PKS during EUOMO
General Assembly in Hoorn about some books that
might be worth translating into Estonian. It seems to
us, that it would be a good idea to have two different
types of brochures or even books – one for men and
one for the wives who are often the ones who start
looking for information.
Our main problem on the table is how to get the men
that come to us when they get first PSA tests to
participate in our organisation after they get
treatment. When they have no problems, it seems
they see no need for our support. But that seems to
be a question that everyone is trying to solve. And
hopefully, whoever finds the answer will share it with
others!
Re-evaluating PSA Testing Rates in
the PLCO Trial
J.E. Shoag, M.D. & S. Mittal, M.D., New York
Presbyterian Hospital, New York, NY
Jim C. Hu, M.D., M.P.H., Weill Cornell Medical
College, New York, NY
N Engl J Med 2016: 374; 1795-1796
In March, the Centers for Medicare and Medicaid
Services temporarily suspended the development of
a proposed “Non-Recommended Prostate-Specific
Antigen (PSA)–Based Screening” measure that would
discourage PSA screening in all men. The U.S.
Preventive Services Task Force (USPSTF) is currently
in the process of updating its recommendations for
prostate-cancer screening. The decisions made by
these two organizations are likely to determine the
fate of PSA screening in the United States.
Much of the controversy surrounding screening
revolves around the Prostate, Lung, Colorectal, and
Ovarian (PLCO) Cancer Screening Trial, which
randomly assigned men to annual prostate-cancer
screening or usual care and showed equivalency in

the primary outcome of
prostate-cancer mortality.
The major criticism of this
trial relates to the degree of
PSA testing in the control
group as reported in the
2009 publication of the trial
results. Subsequent
analyses, including the 2012
USPSTF recommendations,
have interpreted the rate
cited in the 2009 report as
“approximately 50% of men
in the control group
received at least 1 PSA test
during the study.”
This is an inaccurate interpretation of PSA testing in
the control group during the trial. Rates of testing
during the trial were determined by a follow-up
survey, termed the Health Status Questionnaire
(HSQ), that was administered to a subgroup of
participants in the control group.
In the HSQ, men were asked whether they had ever
undergone a PSA blood test for prostate cancer,
along with follow-up questions about when and why
the test was performed. Categorical responses for
when the most recent test was performed were
within the past year, 1 to 2 years ago, 2 to 3 years
ago, more than 3 years ago, and I don‘t remember,
and responses for the main reason for the test were
because of a specific prostate problem, as, a follow-
up to a previous health problem, and part of a
routine physical examination. In the landmark 2009
trial report, the rate of testing in the control group
was limited to men who responded that they had
been tested within the previous year as part of a
routine physical examination, and other responses
were not counted as testing.
As seen in Figure 1, more than 80% of the
participants in the control group without baseline
screening contamination (which for PSA was defined
as ≥2 tests within 3 years before trial entry) reported
having undergone at least 1 PSA test during the trial,
with more than 50% undergoing testing within the
past year and 70% within the past 2 years. Overall,
including the 10% of control participants with
baseline PSA screening contamination, the
proportion of control participants who reported
having undergone at least 1 PSA test before or during
the trial was close to 90%. Moreover, the
pervasiveness of PSA testing was such that when
Figure 1: Prostate-Specific Antigen (PSA) Testing in Participants
without Baseline Screening Contamination in the Control Group
of the Prostate, Lung, Colorectal, and Ovarian Cancer Screening
Trial
both trial groups were surveyed with the HSQ, men in
the control group reported having had more
cumulative PSA testing than men in the intervention
group (see the Supplementary Appendix, available
with the full text of this letter at NEJM.org).
These clarifications should be considered by
policymakers and payers debating reimbursement
and the meaningful use of PSA testing, particularly
given the mounting evidence that intermittent PSA
testing decreases the costs and harms of screening
while preserving the benefits of annual testing.
Surge in aggressive prostate cancer
cases
The Times 22/07/16
More men should be screened for prostate cancer
after a massive rise in cases of the potentially fatal
disease spreading, a report warned.
The study shows the number of new cases of
metastatic prostate cancer in the United States
soared by 72 per cent from 2004 to 2013.
The highest increase (92%) was among men aged 55
to 69, who could benefit from early treatment.
Metastatic prostate cancer is cancer that has spread
to lymph nodes in other parts of the body or bones
but sometimes also to other organs.
The report, published in Prostate Cancer and
Prostatic Diseases considers whether fewer men

being screened may be contributing to the rise or
whether the disease has become more aggressive.
The researchers said that the rise in cases among the
over-55s was “particularly troubling” because men in
that age group are believed to benefit most from
screening and early treatment.
Men who had metastatic prostate cancer diagnosed
in 2013 had higher levels of the disease than in 2004.
Their average level of PSA, a protein produced by the
prostate gland that is often elevated in men with
prostate cancer, was 49 – in 2004 it was 25,
Edward Schaeffer, senior author of the study and
head of urology at Northwestern University’s
Feinberg School of Medicine, said “One hypothesis is
that the disease has become more aggressive,
regardless of the change in screening. The other idea
is that since screening guidelines have become more
lax, when men do get diagnosed it is at a more
advanced stage of the disease. Probably both are
true.”
The researchers found a substantial reduction in the
number of men being screened for prostate cancer
and an associated decline in the number of new cases
being reported.
Dr. Schaeffer said:”The fact that men in 2013 who
presented a metastatic disease had much higher PSAs
than similar men in 2004 hints that more aggressive
disease is on the rise”.
Patients with localised prostate cancer can be cured
whereas treatments for metastatic prostate cancer
tend only to slow the progression of the disease.
Adam Weiner, lead author of the study, said:”The
results indicate that screening guidelines and
treatment need to be refined based on individual
patient risk factors and genetics. This also can help
minimize over-diagnosing and overtreating men with
low risk prostate cancer who do not need treatment.
In Britain, about one in eight men will get prostate
cancer, according to the charity Prostate Cancer UK.
The NHS says that patients have a 30 per cent chance
of surviving the cancer if it has spread into the lymph
nodes, bones and other parts of the body. About 20
to 30 per cent of cases reach this stage before being
diagnosed.
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
The search for new markers to
identify aggressive prostate cancer
Nazareno Suardi, Department of Urology, University
Vita-Salute San Raffaele
Email: suardi.nazareno@gmail.com, Twitter: @naza78
a view of San Raffaele Hospital in Milan
The usefulness of screening for prostate cancer to
reduce metastatic progression and cancer-specific
mortality has been largely debated in the last 5 years.
The majority of studies have used the prostate
specific antigen (PSA) as the most important marker
for prostate cancer detection and characterization.
However, it is well known that PSA does not
represent the “perfect” marker, due to the high rates
of false positive and false negative cases.
Furthermore, the ability of PSA to correctly correlate
with tumor aggressiveness, defined according to the
Gleason score assignment as a pathological
evaluation, is quite low.
In the light of these limitations, many researchers are
trying to identify new markers for early diagnosis of
aggressive prostate cancers. In the last 10 years,
several markers have been proposed and tested such
as -2pro-PSA, PCA3, the 4K-panel and others. On the
other side, the relationship between sex hormones
and prostate cancer development and progression
has been studied for the last 50 years, but conflicting
results have been reported and to date there is not a
clear association between hormones and prostate
cancer. Therefore, there is still a vivid ongoing
research addressing the link between hormones and
prostate cancer aggressiveness.
At the 2016 Annual Congress of the European
Association of Urology (EAU) the interesting results of
an Italian study has been reported (Abstract n. 170).
The group led by Dr. Marco Moschini retrospectively
correlated hormone levels and Gleason scores in
1017 consecutive patients who underwent radical
prostatectomy surgery at the San Raffaele Hospital in
Milan. Serum testosterone, 17β-estradiol and sex
hormone-binding globulin (SHBG) were measured the
day before surgery (8-10 A.M.). Of these patients,

118 showed the most aggressive Gleason pattern 5 at
pathological evaluation.
SHBG (41.8 vs. 37.5 mmol/dL) and the rate of
hypogonadism (32.0% vs. 21.4%) were higher in
patients harboring Gleason pattern 5 at pathology. At
multivariable analyses, SHBG levels (OR: 1.02, p=0.03)
were able to predict the presence of pathological
Gleason pattern 5. Moreover, after adjusting the
analyses for age, for the d’Amico et al. pre-operative
risk groups and for SHBG levels, the presence of
hypogonadism, defined as total testosterone level <3
ng/ml, was independently associated with the
presence of pathological Gleason pattern 5.
SHBG, or sex steroid-binding globulin (SSBG) is a
glycoprotein that binds to the two sex hormones:
androgen and estrogen. SHBG is produced mostly by
the liver and is released into the bloodstream. Other
sites that produce SHBG include the brain, uterus,
testes, and placenta.
This study shows that that hypogonadism, and the
levels of SHBG, were able to predict whether or not
patients had Gleason factor 5, which is the worst
Gleason score. This association will allow us to
predict what the outcome will be before we decide to
treat a patient with surgery. Potentially this can be
helpful to identify patients with the most aggressive
prostate cancer before surgery. On the other hand,
the results of the study indicate again that there is
urgent need for new research to uncover the role
which hormones play in prostate cancer
development.
Prostate Cancer Units Network
The Prostate Cancer Units Network is the first
international network of clinical units dedicated
to the diagnosis and treatment of prostate
cancer. The project is an initiative of the
European School of Oncology in partnership with
Europa Uomo – the European Prostate Cancer
Coalition – with the aim to promote the
multidisciplinary and multiprofessional
management of prostate cancer patients.
http://www.prostatecancerunits.org/
NEWS FLASHES
Active Surveillance and Metastases
A recent study published in the Journal of Urology
(vol. 195 -2016) reports that metastases may develop
in a small proportion of active surveillance patients.
The risk is significantly higher in some men with a
Gleason score of 7.
Hot Sheet Us TOO, 6/16
Obesity increases risk of prostate cancer
A 14 year study carried out by Oxford University,
covering 8 countries and involving 150,000 men,
showed that every four inches increase in a man’s
waist, typical of a beer belly, increases the man’s
exposure to prostate cancer. The extra weight on the
waist appeared to have an impact on hormones
which fuel prostate disease and affect the
metabolism.
The Daily Telegraph, 2/6/16
Active Surveillance is Often “Not”
A new study suggests that body risk of prostate
cancer may be higher than expected in men
categorized as having a low risk disease, also as only
one man out of three receives appropriate follow up
tests. With Active Surveillance both patients and
providers tend to get a little lackadaisical said
Gregory Auffenburg, MD, from the University of
Michigan.
Hot Sheet, Us TOO, 6/16
Immune cell vaccine could help against all
cancers
A universal cancer vaccine is on the horizon after
scientists at the Johannes Gutenberg University in
Mainz, Germany, discovered how to rewire immune
cells to fight any type of cancer.
The potential new therapy involves injecting tiny
particles of genetic code into the body which travel
to the immune cells and teach them to recognise
specific cancers.
The Daily Telegraph, 2/6/16
Medicare suspends the proposed penalty for
recommending PSA Tests
The Centers for Medicare & Medical Services (CMS),
USA, has temporarily suspended the development of
the proposal that would have penalized physicians
for performing “non-recommended” prostate cancer
screening with the PSA test.
Hot Sheet, Us TOO, 6/16

Melanoma skin cancers
Britons in Brittany have been warned to take special
measures to avoid UV rays and do so even when it is
cloudy.
Scientists have found that melanoma skin cancers are
more than twice as common in Britanny as on the
French Riviera.
In 2914 there were 1,305 cases in Brittany against
only 585 cases on the Riviera. It is partly a problem of
light skins and blue eyes.
Creams are not the answer. The best protection is
clothing.
Researcher in Nice have found a molecule, still
subject to testing, that may kill skin and other
cancers.
The Connexion, Summer 2016
Learn more:
https://platform.emergingmed.com/find-clinical-
trials/bayer#partnerhome
Local Men Raise Over £1100 For
Rory The Robot Prostate Cancer
Appeal Fund
Paul Markell, Treasurer, Kidderminster and
Worcestershire Prostate Cancer Support Group.
Hugh Gunn, Trustee, Tackle, UK
Three local men have raised over £1100 through a
collection at local supermarkets to help
Worcestershire men with prostate cancer in future.
£1171 was raised over two days by Brian Wilkes, Ian
Jukes and Paul Markall, all part of local appeal Rory
the Robot.
The Rory the Robot appeal is a campaign to raise £1.6
million to buy a state of the art surgical robot to treat
Worcestershire men with prostate cancer. With
Rory's assistance, patients will benefit from less pain,
minimal blood loss, quicker recovery and reduced
complications.
Rory, the Robot
The collection was held at the Morrison’s store in
Hereford on Friday 12 and Saturday 13 February with
local shoppers digging deep to donate.
Many of the customers who contributed had stories
to tell themselves of friends or family who have been
affected by prostate cancer.
Mr Wilkes, who works at Morrison’s in Bromsgrove
has also organised other collections and bag packing
events covering 11 stores over Herefordshire and
Worcestershire this year.
Ian Jukes, Chairman of the Rory the Robot appeal
said: “The appeal is very close to our hearts and of
many others in the county too. We’re very grateful
for the public’s generosity and all those who have
supported us so far. We’re very excited for the
upcoming events and hope that they will be as
successful as this first one!”
Letter 1
Dear Editor,
I am reading the latest issue of Prostate Matters. I
read with interest Robin Kent's letter.
In February last year I had my prostate removed (psa
56 Gleeson 6 ish). Unfortunately my next psa in May

was .75 and I was told to have 33 daily sessions of
radiotherapy at the Churchill hospital between 9th
July and 24th August. All seemed to be ok but
halfway through I couldn't pass urine and had to have
a catheter fitted (by Stoke Mandeville hospital). This
also caused problems having a clamp fitted to
regulate my flow. The catheter was due to be
removed early in September but after a few hours I
couldn't go again and another one was fitted. This
also happened in October and only after a small op in
December could I dispense with it, although I am still
wearing incontinence pads.
I read with interest that in Birmingham they check to
see that the bladder is full before each treatment.
This does not happen at Oxford, and I wonder if this
might have helped my specific case.
By the way my psa in October was .92 but at the last
count recently was down to .34 fortunately.
Regards,
Richard
Reply
Here Is the reply from Roger Wotton. His reply is
as a patient who has had similar treatment - Not
as a Clinician:
Richard, just a follow-on from your letter. I just had
my monthly follow up phone call with the lead
radiographer at Mount Vernon. While on the
phone I asked him about current protocols around
normal (external beam) radiotherapy. It was
interesting. He said traditionally the radiotherapy
was done on a full bladder but in the past 12
months there is a trend to do it with an empty
bladder as they become more expert in the
techniques. Evidence so far is encouraging and
shows no difference in outcome between full
bladder patients and empty bladder patients. It's
probably the approach you had in Oxford (empty)
compared to Doug Badger's in Birmingham (full).
What he said was that each patient is different and
it depends what area they treat - prostate only or
pelvic area included. There appears to be no
difference in side effects for full or empty bladders.
It is just a fact that a percentage of patients will get
side effects irrespective of full or empty approach
and it does appear you were unlucky. As indeed I
was when I had six weeks of bladder bleeding one
year after traditional radiotherapy - the same
treatment as yourself.
I hope this helps.
Regards,
Roger Wotton
Milano conference on Active
Surveillance
Translation from the Swedish ProstataNytt
Calle Waller
More
and
more
men
with
newly
diagnos
ed low-
risk
prostat
e
cancer
are nowadays recommended to refrain from radical
treatment in the form of radiation or surgery.
Instead, they are offered a so-called active
surveillance alternative, AS, with a systematic follow-
up. The reason is that the risk that low-risk cancer
develops further into metastases is extraordinarily
small. The benefit of AS is understood that many will
not have radical treatment and thus avoid the
inherent risks in the form of treating as injuries and
side effects.
Since AS for low risk prostate cancer is now
recommended as a first option, we can predict that
this trend will continue to grow. Of the more than
10,000 who were diagnosed in Sweden during 2014,
2500 chose to await treatment and instead opted for
AS. In a few years, a large proportion of the 100, 000
men then living in Sweden with the diagnosis will be
treated by AS. It is therefore high time that we get
ourselves better informed on healthcare
management, when it comes to informing and
supporting men in their decision-making and how the
protocols for follow-ups looks and is applied. To take
advantage of the benefits and avoid the risks we also
need more research and exchange of knowledge-
One step was taken on 11-12 February when the
EAU, European Association of Urologists, and ESO,
the European School of Oncology, jointly organized a
conference gathering some 100 experts from Europe
and the US, precisely to discuss Active Surveillance, ie
AS. Numerous studies were reported, interspersed
with discussions about the value and applicability.
In summary, one can say that unity of opinion was
general about refraining from active treatment of
low-risk cancer, but that many question marks
remain to straighten out when it comes to handling

the situation. Here are some examples of what was
discussed:
- A large consensus that the majority of men with
low-risk tumors in utilizing AS will live the rest of lives
without further disease symptoms.
- In contrast, there is growing skepticism with AS in
men with intermediate risk tumors (Gleason 7) due to
the high risk of metastasis.
- Up to 30% will sooner or later get signs of disease
progression and therefore need treatment. They then
have saved some time without side effects, but also
risked the disease developing further, or in the worst
case passed the possibility of a definite cure.
- A number will cancel or fail to follow their AS
program. It can be difficult to live with the realization
that you have a cancer in your body, albeit not
aggressive. Or maybe you want to forget about your
illness completely. An important question is how to
follow up on these attitudes.
- The decision to select AS requires that the patient
has been well and repeatedly informed. Men who
have had discussions with other experts show more
confidence in their choice. Even here, then, a second
opinion is recommended.
- Follow-up protocols can vary, but should at least
consist of regular PSA tests and biopsies.
Unfortunately, biopsies are not at all harmless. The
risk of serious infection is becoming more common
due to resistant bacteria.
- MpMRT, multiparametric MRI is an imaging
technique which is expected to reduce the need for
biopsies. The idea is that thanks to this MRI method
you can determine if the biopsy is necessary at all
and how it, in this case, should be effected.
Unfortunately more study is required before the
method can be fully recommended.
- Tumor genetic imprints are studied in many
projects. It is expected that this will become the next
step forward to safer prognosis and treatment
options.
- A tumor with a Gleason 3+3 is not expected to
metastasize. The problem is that you can never be
absolutely sure that the value is "exact".
- The international organization Movember is funding
a worldwide project, GAP3, in order, among other
things, to develop an international standard for
follow-up protocols in AS.
Professor Jonas Hugosson at the University of
Gothenburg was one of those who led the Milan
Conference. From Sweden Prof. Sigrid Carlsson,
Associate Professor and researcher at Memorial
Sloan-Kettering Cancer Center also starred, as well as
Kimia Kohestani, a doctoral student at the University
of Gothenburg. In the photograph the legendary
urologist Louis Denis is also present, one of the
founders of our European organization Europa-
Uomo.
Photo: From left, Calle Waller, Prof. Jonas Hugosson, Kimia
Kohestani, associate professor Sigrid Carlsson, Prof. Louis Denis
The positive experience of an Active
Surveillance patient
Jan Humblet, US TOO Belgium
This presentation explains my experience as a patient
who finally, thankfully with the support of many,
opted for “active surveillance” (AS) as the treatment
of my low-risk prostate cancer (PCa). I’ll talk about
the difficult way that I followed from the diagnosis of
PCa to the not obvious decision to opt for AS.
I speak about the emotional and the social problems I
faced as a patient. Only the word “cancer” caused
fear, uncertainty and confusion. In my case the panic
was clearly reinforced by a lack of basic knowledge
about PCa.
Fortunately, I owe much to the information I have
learned on joining a peer support group (US TOO
Belgium). The group experience offers a place to
belong to and to express feelings of fear and
confusion. I especially learned that there is no one-
fits-all approach for PCa. That means that while some
require urgent and aggressive treatment, there are

many who can slow down and take an AS approach. I
also learned that in my case there was no reason for
a hasty decision and that the risk of overtreatment
with various undesirable side effects was real.
In addition to a brief description of the medical
monitoring of AS, an overview of the key elements of
an appropriate lifestyle are given to the patient. A
modified lifestyle is essentially a matter of common
sense: move, eat healthy and inform yourself about
your physical condition. All these elements are
included in a global life style project designed for PCa
patients with the appropriate name: FEEL+. As US
TOO Belgium, we promote and practise
systematically physical exercises indicated in the
FEEL+ program. A brief overview is captured by the
acronym JAMES, where the J stands for jogging (or
walking), A stands for abdominal exercises, M for
muscle exercises and S for suppleness training.
Feel+ exercises
As patients we are aware of the fact that the
objective of AS is to keep an option on curative
treatment if needed. In that case, every possible
treatment will run better if we have a good physical
condition.
Psychological aspects in Active
Surveillance
Dr. Tania Estapé, FEFOC Spain
The treatment most understood and accepted among
cancer patients and in the general population is
surgery. Physically eradicate a tumour is something
that many people see as necessary and thus assume
that the evil is outside the body. It is much more
understandable that sometimes complementary
treatments such as radiotherapy and chemotherapy
are preferable, especially if the latter is applied based
on relapse prevention without tangible disease. If this
is so, it is even more difficult to accept that the
tumour is not removed or eliminated by any means,
but opt to retain it in the body, in this case in the
prostate. Active surveillance (AS) is an option in cases
of slow growth and/or elderly patients. Of course it is
not an aggressive option, and only requires active
control of the disease. If in time the tumour advances
the most appropriate therapeutic option is activated.
But this involves a series of obstacles at psychological
level that we shall now consider.
The decision to choose AS is difficult for the affected
and their families as it elicits a chronic sense of
insecurity. The patient wakes up every day knowing
that he has cancer in himself and it's complicated to
deal with this. Sometimes it may even lead to a
denial, as the attribution of cancer as something
horrible and that spreads makes the man, in the
absence of symptoms, believe that perhaps it is not
true. Studies show that after interviewing patients in
AS there is a tendency to comment that “the tumour
in my prostate is benign” since no treatment is
required. There are thus patients that may prefer
more aggressive options even if they have the
possibility of AS and this is determined mainly by the
following reasons:
- The doctor does not support more or less explicitly
AS
- Family pressure to opt for active treatment
- Pressure from the individual himself who prefers to
fight the disease, because it is what we have learned,
that you have to fight cancer. It is also a way to make
sense of control, which is lost with the idea that AS
gives that “nothing is done”. This is called self-
efficacy and is the degree to which the patient
perceives that is effective against the occurrence of
the disease that correlates with a good mental
adjustment to it.
The two most common psychological consequences
in AS are uncertainty and anxiety, and both are

closely related.
Uncertainty comes from the above mentioned feeling
that the evil has not been eradicated and that is not
under control, but is left to grow "at ease". We would
say that the patient lacks clues about how one is
normally expected to live with cancer, which is
normally by aggressive and immediate treatment.
Another aspect that has great weight in uncertainty is
what we call making medical decisions. The patient is
compelled to opt for a decision which is not a
treatment. If it is already a difficult decision, and in
prostate cancer where we often have elderly patients
who come from a time when the doctor decided the
best option for the patient. It was the era of so-called
paternalism in which no option was given to the
patient to decide. It is also true that there were fewer
options than we have today. The shift to a more
active participation by patients is slow and for many
people it involves a high degree of uncertainty for
fear of not choosing the best option. In the case of
AS, since no precise therapy has been decided,
uncertainty is total. It has been shown that
uncertainty greatly reduces the quality of life of
patients. As they are not receiving any conventional
treatment, the patient fails to see any change in his
life, because of the weight of the stress of the
disease. Some men may comment that they feel they
have inside "a time bomb" and this prevents them
from enjoying life.
Closely related to uncertainty, high levels of anxiety
are displayed. We've talked here of anxiety, but in
this case the focus on the subsequent degree of
nervousness regarding the tumour and trying to live a
normal life. Uncertainty is a major precursor of
anxiety. In this case it is determined by the ambiguity
in the information (in the decision making the doctor
give a series of information trying to be fair but also
trying not to show favour for one or the other
option). This situation drastically reduces the ability
to handle situations for fear and indecision weigh
much more than anything else in the mind of the
patient. There are many studies on the degree of
anxiety of cancer patients, some related to the PSA
anxiety, others which appear as a result of physical
symptoms that generate insecurity (eg. urinary
incontinence). But in this case we refer to the anxiety
generated by the decision and then for having chosen
the "no treatment" option. The degree of anxiety
experienced is high at first but some studies show
that then it is reduced and that few men later opt for
conventional therapeutic options because of their
anxiety. We should add here that this type of anxiety
sometimes feeds back with relatives who fear being
mistaken in letting your loved ones keep the tumour
in their bodies which could lead to unwanted growth
that could end their life.
Another source of anxiety in AS is fear of relapse. This
is one of the great psychological problems in cancer
and it may be increased by this non-therapeutic
option. Some studies show that patients who receive
the standard treatment option may experience a
reduction of this fear of relapse, although in some
cases it reappears on control visits. In AS cases,
anxiety related with disease progression may lead to
a drastic reduction in the quality of life if the patient
is continuously reminded of the dangers of the
disease.
We have to keep in mind that men who show more
anxiety to the situation generated by the choice of AS
are people with previous features of more
neuroticism and high risk of stress. In other words,
people with a tendency to worry, a characteristic
already present before the diagnosis of cancer.
Prostate cancer is a negative event that threatens the
quality of life but the reactions to it, also depend on
the personal characteristics of men. We must also
include men with a history of generalized anxiety
disorders, those with poor education and some other
pre-existing conditions. These features lead men to
be more prone to anxiety about prostate cancer and
especially if the option is AS.
The paradox of AS is being seen as an option which is
seen as a sign of medical progress because it avoids
aggressive treatments and impaired quality of life.
However it could create more stress than options
much more disabling for the subject, such as
treatments involving impotence and urinary
incontinence. For this reason it is very important to
work on several fronts to make the patient feel
relaxed before the decision making and effectively
able to enjoy life without being troubled by the
consequences of this decision. In this sense, we
propose the following:
- Support groups: the assistance of groups where
they can get information about the disease and to
meet people who are going through or have gone
through the same process and can therefore help to
calm them down. These groups often have the advice
of professionals. It is always better to be able to
respond to different situations.
- Participatory management of everything related to
the disease: it is important for the patient to have the
feeling that everything is under control. One way to
achieve this is to maximize the psychological support
through group or individual sessions but also

promote healthy behaviours and make the patient
feel that he is "doing something" to prevent the
disease from progressing. One aspect we have
discussed that makes the patient feel anxious and
insecure is the fact that AS makes him feel that
nothing is being done.
Therefore, and as part of psycho-educational
programs, we urge you to be active against the
disease which comes from the establishment of
healthy behaviours. Several studies are analysing the
inclusion of global programs within the same group
of psychological support, where it impinges on
activities such as exercise, diet changes and stress
reduction techniques. Early results show an increase
in the quality of life of patients with AS who follow
these programs versus those in the control group
who only attend scheduled visits. Start and stick to
healthy behaviours is a way to feel active and fighting
against the disease, which is perhaps what patients
notice that they lack when have opted for AS.
Preliminary studies on this are few and recent but are
pointing to an improvement resulting in more
feelings of hope, optimism and an increased fighting
spirit.
There is an important point we want to talk about.
The option of AS sometimes leads to the use of
alternative therapies, on the advice of family and
friends, which is favoured by this feeling of "not
doing anything". It is estimated that about 25% of
patients will use this type of "therapies" and that
most do not discuss them with their doctors. There is
a wide range, from alleged healing treatments to
supplements to enhance the immune system or
"defences" which are supposed to prevent the cancer
from progressing. It would be good to acquire a high
level of communication regarding this, to prevent the
patient from jumping visits or controls or end up
using some unproven therapy.
AS concludes that the quality of life that is supposed
to be improved by choosing the AS thanks to the lack
of physical consequences. However this may be
compromised by the high level of anxiety and
uncertainty involved by no treatment and living with
the idea that one has the tumour in his body. It is
necessary to provide comprehensive programs in
which patients and their families have the possibility
of truthful information that allows them to gradually
assume that the chosen option is best for them.
Psychological support must be included to help
eradicate erroneous beliefs and replace them with
cognitions of the true situation. These programs also
should include projects like the establishment and
adherence to healthy behaviour related to changes in
diet and exercise. These have the dual purpose of
helping psychologically by inducing lifestyles
incompatible with anxious ruminations, and at the
same time make the patient acquire a sense of self-
efficacy against the disease. It would also be
beneficial to achieve adequate communication
programs on AS for physicians and other
professionals in order to reduce anxiety related to
decision making, and the AS option which means
avoiding conventional treatments.
A Patient’s Dilemma
Francesco MariaTesta
A brief account by the above patient guilty of having
neglected to effect an early detection, told in a
reassuring manner in order to be positive and
reflective
On Wednesday 1st
October I have an appointment
with a surgeon who intends operating me to reduce
an excessive breast formation. Something quite
unusual for a man. In the meantime he has
prescribed a mammary ultrasound and a bilateral
breast scan and also appropriate blood tests.
The first time that I let off steam with my family
doctor, it was for the painful gynecomastia caused by
Casodex which I had to take day after day in order to
keep my PSA low. I lost my temper when he told me
“Don’t worry, it is only of a secondary sexual nature”.
“It’s almost like changing sex”, I replied in the same
tone.
My story began on 31st
January 2002 when an
ultrasound control of the ulcerative rectocolite
appeared out of the blue soon after the death of my
wife after a sufferance which had lasted some 30
years. The gastroenterologist noted that my prostate
had notably increased.
I wasted no time and though I had had no minimum
pre-warning, I was operated on 4th
April of that year.
When my specialist for intestinal problems heard of
my experience he told me that I had been very lucky
as it could have gone much worse. I had survived also
as, like most of us, I am greatly attached to life.
Nevertheless I couldn’t avoid complaining to my GP
who, notwithstanding the computer which
dominated his desk, failed to warn his male patients
to have a PSA test, especially once they reached the
danger age.

The second time that I experienced a swelling of the
breasts, the specialist quite casually asked me why I
wouldn’t accept a surgical operation. You know that
such an operation is covered by the national health
system. Sarcastically I replied, “What luck to have
such a beautifying operation free of charge”.
One month later on the occasion of my annual check-
up my surgeon friend asked me why I still put off the
idea of the surgical operation, “After all”, he said,”
you don’t and won’t ever have to milk a child”. I
finally decided to take his advice and went to the
breast division of a Florence hospital where I was
surrounded by many members of the female sex. I
soon realized that while we men are full of ridiculous
reserves and embarrassment, this was not the case
for our lifetime companions, free of any complexes
and certainly more realistic and courageous. On the
contrary I well remember the embarrassment of a
friend of mine after prostatectomy when he went
back home and had to put up with the classical
allusive question accompanied by an eloquent
gesture,” So, no more………..?” Encouraged by the
friendly and understanding attitude of the women
who had the same problem, and informed that cases
like mine were quite frequent, I underwent the
surgical operation in an entirely different manner.
Why is it that we always think that unpleasant
experiences only happen to others. such as a serious
illness, a car accident, or an accident at work?
Prevention is not a passive attitude. It implies our
responsible and active manner in coping with
problems and possibly resolving them, rather than
pretending, out of embarrassment, laziness of a
thousand other reasons, prefer to believe that the
problem doesn’t exist.
I would like to conclude underlining the absurd Italian
reality where the elevated mortality of the male sex
may be caused by neoplasia provoked by prostate
cancer, in part the consequence of a limited
knowledge of the PSA test (fewer than 22% of the
men in the dangerous years from 50 to 70). I repeat
once again that the PSA test is fundamental as was
underlined in the international conference held in
Milan mid 2015.
I exclude that this painful Italian truth depends on
our indifference, but rather on a lack of knowledge
and transparency, as no-one well informed would
think of ignoring this disease and its possible cure.
Besides our unwillingness to expose ourselves, in my
opinion much of the responsibility for this lack of
information is due to a subtle institutional power in
the hands of men who have our same prejudices and
thus fail to take valid initiatives either to prevent or
reduce the consequences of this disease which is
constantly growing in dimensions. Otherwise all that
was possible would have already been achieved.
We therefore must free ourselves from our cultural
conditioning, face facts and support, even locally,
those who think alike and sustain the right to enjoy
the good health of the entire community.
GA 2016, Hoorn, June 17-19, 2016 © E. Briers
“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; Estonia: Kalev Lehtla, vahimehed@gmail.com; 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.
Anja Vancauwenbergh, Newsletter Secretary, europauomo@skynet.be

Did You Know - September 2016

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