Fed nesletter issue1 - may 08web
Suppor t Federation
The Prostate Cancer Support Federation arose from the perceived needto provide a focus for, and a single voice to express, the views and
concerns of the patient-led prostate cancer community in the UK. It wasrecognised that this could be best achieved by a federation ofindependent patient-led prostate cancer charities and support groups.
Currently, there are many such support groups throughout the Country
which are very active in providing help support and information to
patients and their carers. Many are also active in raising awareness and
acting as advocates for our common aims. The establishment of the
Federation will in no way interfere with any of these activities. However,
we can make more impact together than we can individually. A single
voice, where this can be agreed across the Country, will be more
effective than comments from any single group.
In this first newsletter we mention some of the issues which the
Federation can consider to express the patient view.
Frequently, we ask “why do women with breast cancer seem to get a
better deal than men with prostate cancer”. They are, of course, different
diseases and the answer is not straightforward. Nevertheless, onereason for the disparity is that women have grouped to form a very
strong central association from which country-wide views can be
developed, focused and expressed. Organisations of this kind are also
evident in the case of several other types of cancer.
The Federation can provide us with this facility, and will also, via our
membership of Europa Uomo, keep us in touch with developments inEurope. Our constitution provides for ‘Organisation Membership’ to
Older men with PCcan Watch & Wait.
organisations which, although not patient-led, share our interest inprostate cancer and support our ‘objects’. Links with major charities will
Research Directions and Funding
One area of continuing interest and concern is the direction and extentof the research effort. Differences in research funding for breast and
prostate cancer have not, over the years, favoured prostate cancer.
Nevertheless, there is, currently, considerable research into the under-
standing and treatment of prostate cancer. The underlying causes of
prostate cancer are not yet understood, and fundamental research into
genetic and biochemical features, and to a lesser extent into environ-
mental and life-style effects, is aimed at clarifying the position.
This is a very worthy, long term aim, which we all support. However, the
concerns of patients tend to be shorter term….
continued on back page>>>
V I S I T O U R N E W W E B S I T E - www.prostatecancerfederation.org.uk
NICE Prostate Cancer Guideline
comment by Sandy Tyndale-Biscoe
Many of you will be aware that, towards the end
men in this category that they forego immediate
of February this year, the long awaited NICE
treatment, when their instincts may be otherwise.
Guideline on the diagnosis and treatment of
prostate cancer was finally published. It was met
Guideline fly in the face of modern best practice,
with deafening silence from the media. The lack
and as a result a number of the top clinicians in
of media interest was deliberate and planned by
the country are very concerned. Specific areas
NICE themselves. At the time of publication,
where this is the case are biopsy and pathology
l a w y e r s f o r c e r t a i n m e d i c a l e q u i p m e n t
procedures, dose rates for radiotherapy, the
manufacturers were threatening to sue, and NICE
failure to distinguish low and high dose rate
were keen to get the Guidelines out with minimal
brachytherapy, and the criteria for initiating
Thus did NICE notch up a further betrayal of men
The really bad news for many patients is the
who suffer from prostate cancer. Those of us who
stance that has been taken over the use of
had played a part in the public consultation about
cryotherapy as a salvage treatment, where NICE
these Guidelines had hoped that, however much
is almost silent. Whilst the full (long) version of
we expected to dislike what we suspected was
the Guidel ine does mention that s a lvag e
coming, at least publication would attract publicity
therapies for relapse after radiotherapy include
and the chance to raise awareness of prostate
cryotherapy, reflecting the fact that many
cancer, the lack of which is the chief cause of the
clinicians believe that this can provide a genuine,
fact that the death rate from prostate cancer has
curative, last chance option for some men with
remained unchanged for the last 15 years.
relapse after radiotherapy as a primary treatment,
Much of the content of the Guideline was as
it makes no recommendation on the matter. The
expec ted , par t ic ula rl y f o r thos e who had
short version of the Guideline, which is the one
participated in the consultation process and
consulted by most non prostate cancer experts, is
submitted comments. The impact on prostate
totally silent on the matter. NICE came under
cancer sufferers varies from good, through not so
strong pressure to modify its stance over this,
good, to bad. On the good side is the decoupling
which it resisted. Unfortunately much of the
of a single elevated PSA Test result from
pressure appeared to be (indeed, some was)
automatic biopsy and the slippery path to
commercially based, which has generally fouled
treatment. The Guideline says “The serum PSA
level alone should not automatically lead to a
What can be done to correct what has turned out
prostate biopsy”, which is a step in the right
to be a very disappointing Guideline? Probably
direction (although an over-simplification), as the
not much in the short term. The Department of
belief that it does do exactly that is often used as
Health’s Prostate Cancer Advisory Group had a
lengthy discussion on it last month, at which the
T h e n o t s o g o o d n e w s i s t h e a p p r o a c h
Chair of the Guideline Development Group came
recommended for men diagnosed with “low risk”
under considerable pressure. A total of eleven
disease (PSA ≤ 10ng/ml AND Gleason ≤ 6 AND
serious issues were noted by Prof Mike Richards,
T1-T2a) appears to be Active Surveillance, with
the Cancer “Tsar”, some of which I’ve outlined
the recommendation that “Men with low-risk
above. But revision of the Guideline is not
localised prostate cancer who are considered
planned for another three years at least, and it
suitable for radical treatment should first be
seems unlikely that NICE will succumb to any
offered active surveillance”. It is intriguing that this
pressure to revise its stance in the mean time.
However, PCTs are not obliged to follow NICE
Guideline Development Group, from something
Guidelines where there is strong clinical evidence
that was altogether less dogmatic, and merely
that they’re wrong. It is hopeful that the Central
offered Active Surveillance as an option. Again, in
South Coast Cancer Network is writing to all
countering the anti-PSA argument, Active Surveil-
PCTs in its area stating the consensus amongst
lance should be encouraged where there is
its clinicians that salvage cryotherapy is an
strong confidence that the disease is not currently
effective treatment and asking PCTs to fund it.
but, the insertion of the word
What effect such a letter may have we don’t
“first” in the recommendation very much changes
know, but it’s a step in the right direction, and
the emphasis, and in a way that was not intended
other networks may be persuaded to follow suit.
by the clinicians who worked on the Guideline.
You can order copies of the NICE Guideline via the
There is concern, not only amongst patients, that
this will be used to save money by suggesting to
or phone NICE publications on 0845 003 7783.
Should UK Prostate Cancer Detection Age Be Lowered
In line with the United States
report from the British Medical Journal
In many countries prostate cancer screening
required to optimize uptake in younger men if
happens ahead of evidence from ongoing trials.
In several countries, early opportunistic screen-
If the 2,236,000 males aged 45-49 in the UK
ing starts with people aged 50. The Americans
have recently adopted a lower age limit after two
studies found that raised PSA (prostate specific
elevated PSA, of whom 51,449 would have
antigen) levels in males in their 40s was linked to
Treatment would benefit some
of those with prostate cancer. However, this has
A team of scientists in the UK looked at the
to be weighed against the probable distress
feasibility of prostate cancer testing, prevalence
caused to the 221,456 men with elevated PSA
and characteristics in a random group of younger
who do not have cancer. Apart from distress,
men. The study involved 442 men aged 40-45
these men also run the risk of undergoing
they all agreed to PSA testing. 54 (12%) of them
unnecessary treatment and the side-effects that
had a high PSA result. They were invited to
additional testing, involving an ultrasound-guided
The study will inform the debate about PSA
prostate biopsy, another PSA test, and a digital
thresholds and age limits, say the researchers,
but only if prostate cancer screening is proven
Ten cases of prostate cancer were detected - a
as effective in ongoing trials. Until we have the
similar rate to that found in older men, 2.3%.
results of the ongoing trials, policy should advise
Five of them had tumours that were potentially
clinicians to inform the patients about the
risky to health. They agreed to have one of three
benefits, potential harms, and limitations of
treatment options - radiotherapy, surgery, or
The study revealed that men under 50 will
"Detection of prostate cancer in unselected young men:
accept prostate cancer testing at a much lower
prospective cohort nested within a randomised control ed trial"
J Athene Lane, Joanne Howson, Jenny L Donovan, John RGoepel, Daniel J Dedman, Liz Down, Emma L Turner,
explained. Therefore, greater efforts would be
Advanced Prostate Cancer Can Be Predicted By PSA Testing
A single prostate specific antigen (PSA) test taken before the age of 50 can be used to predict
advanced prostate cancer in men up to 25 years in advance of a diagnosis, according to a new
study published by researchers at Memorial Sloan-Kettering Cancer Center in New York and Lund
University in Sweden. The findings, published in the online open-access journal BMC Medicine
should help physicians identify men who would benefit from intensive prostate cancer screenings
over their lifetime.
The team's research has shown that a single PSA test at age 50 or younger could predict the
presence of prostate cancer in men up to 25 years in advance of diagnosis. "This latest study is a
unique, natural experiment to test whether we can predict advanced prostate cancer many years
before it is diagnosed," said lead author Hans Lilja, MD, PhD. The findings are based on the
research team's analysis of blood samples collected between 1974 and 1986 as part of a large,
population-based study of middle aged men called the Malmö Preventative Medicine study. The
study cohort, in Malmö, Sweden, included 161 men who had been diagnosed with advanced
prostate cancer by 1999 and men of a similar age who had not developed cancer by that time.
The results showed that the total
PSA level was an accurate predictor of advanced cancer
diagnosis in men later in life. The majority, 66 percent, of advanced cancers were seen in men
whose PSA levels were in the top 20 percent (total PSA > 0.9 ng/ml). The average length of time
from blood test to cancer diagnosis was 17 years.
While this data does not have any immediate implications for general prostate cancer screening
guidelines, Dr. Lilja adds, "We have found that a single PSA test taken at or before age 50 is a very
strong predictor of advanced prostate cancer diagnosed up to 25 years later. This suggests the
possibility of using an early PSA test to determine which men should be the focus of the most
intensive screening efforts." Vigilant, targeted screenings in high-risk men could allow physicians to
intervene when the cancer is at an early stage.
Prostate Cancer Growth
the risks," said lead author Mack Roach III, MD,professor and chair of radiation oncology and
Delayed By Up To 8 Years
By Just 4 Months Of
California, San Francisco. "While four months ofhormonal
significant side effects, we found that it can delaythe development of bone metastasis by as many
Researchers report that just four months of
as eight years, which is very significant."
hormonal therapy before and with standard
Starting in 1987, Radiation Therapy Oncology
External Beam Radiation Therapy slowed cancer
Group researchers studied 224 men with high-
growth by as much as eight years - especially the
risk prostate cancer who received ADT (goserelin
development of bone metastases - and increased
survival in older men with potentially aggressive
external beam radiation therapy, and 232 men
prostate cancer. This "neoadjuvant" hormonal
with the disease who received radiation therapy
therapy may allow men most at risk of developing
alone. After 13 years of follow up, they found
better 10-year disease-specific death rates (the
therapy later on. Furthermore, the short-term
rate of death from prostate cancer) for men who
hormonal therapy did not increase the risk of
received ADT plus radiation (23 percent versus
cardiovascular disease - a potential side effect of
36 percent of the radiation-only group), disease
long-term hormonal therapy. The study was
metastasis rates (35 percent versus 47 percent),
published online January 2 in the Journal of
disease-free survival (the percentage of men free
of cancer at 10 years; 11 percent versus 3 per-
Hormonal therapy - called androgen deprivation
cent) and biochemical failure rates (a rise in PSA
therapy (ADT) - lowers levels of cancer-fuelling
levels; 65 percent versus 80 percent).
testosterone in the blood. It is an important treat-
Among men who received neoadjuvant hormonal
ment option for men with prostate cancer that
therapy, there was up to an eight-year delay in
continues to progress despite initial treatment
the time it took 40 percent of patients to develop
with surgery, radiation therapy, or chemotherapy,
bone metastases compared with men receiving
but has been associated with side effects such as
bone loss, osteoporosis, depression and an
metastases often require long-term hormonal
increase in cardiovascular risk factors (including
therapy, which can increase their risk for side
blood lipids, abdominal obesity and a syndrome
effects. "So by taking a little bit of hormonal
therapy early, patients may avoid having to take
"This study demonstrates that the benefits of
a lot of it later," added Dr. Roach.
short-term hormonal therapy for men receiving
Article adapted by Medical News Today from
radiation therapy for prostate cancer far outweigh
New Urine Test More Accurate
ScienceDaily (Feb. 5, 2008)
— An experimental urine biomarker
test developed by researchers at the
University of Michigan more accurately detects prostate cancer than any other screening method
currently in use, according to a study published in the February 1 issue of Cancer Research, a journal
of the American Association for Cancer Research.
The researchers say a simple urine test that screens for the presence of four
different RNA molecules
[GOLPH2, which is generally over-expressed in prostate cancer; SPINK1, over-expressed in a subset
of these cancers; the PCA3 transcript expression; and TMPRSS2:ERG fusion status] accurately
identified 80 percent of patients in a study who were later found to have prostate cancer, and was 61
percent effective in ruling out disease in other study participants.
This is 5 percent better than PCA3 alone and far more accurate than the PSA blood test currently inuse worldwide, which can accurately detect prostate cancer in men with the disease but which alsoidentifies many men with enlarged prostate glands who do not develop cancer, researchers say.
"Relative to what is out there, this is the best test so far," said the study's lead author, ArulChinnaiyan, M.D., Ph.D., director of the Michigan Centre for Translational Pathology at the Universityof Michigan.
He also says that this first generation multiple biomarker test
will likely be improved upon asresearchers continue to uncover the molecular underpinnings of prostate cancer. "We want to developa test to allow physicians to predict whether their patients have prostate cancer that is so accurate abiopsy won't be needed to rule cancer out," Chinnaiyan said. "No test can do that now."
Zeolite and the Pfeifer Protocol
a report by Ann Rowland Dip ION
The research into complementary medicine and
a believer in the benefits of a dietary regime but
its role in helping people with cancer still goes on
a colleague developed one that Pfeifer has now
apace and I find it difficult to keep up with it all
introduced as the final point in his regime.
but last autumn I went to a lecture in London
Interestingly it is very similar to the dietary
given by Professor Pfeifer of the Aeskulap Klinic
advice I give, in that dairy is out, fruit and
in Switzerland on his anti-cancer protocol. I was
vegetables are in and the grain carbohydrates
particularly interested to hear him speak as quite
are bad and everything as organic as you can
a few people had been asking me what I thought
of Zeolite. Having listened to a fascinating talk I
I queried with the Professor the use of Zeolite
was very impressed with the science behind this
product and think it well worth trying.
that he uses it all the time during conventional
Zeolite is a mineral found in volcanic soil that
treatment at his clinic and drew me a graph in
was deposited in lakes and the sea and has
been used for over a thousand years in Asian
oncologists are not happy for supplements to be
medicine. Scientists in Croatia have found a
used at the same time as their treatment he told
method of reducing the Zeolite to nano particles
me to tell them to read the research! I leave that
and it is in this form that research is showing
benefits in the fight against cancer.
If you wish to try the Zeolite it can be bought
It appears to have the ability to remove heavy
from The Really Healthy Co. (020 8480 1000) or
metals, pesticides, herbicides, dioxins and radio-
the Nutri Centre (020 7637 8436) and quote ZZ
active materials from the body but, unlike other
ARS 001 as you will get a 15% discount.
chelating agents, it leaves the healthy minerals
Needless to say it is not cheap but if you use the
behind. It also appears to prevent the absorption
liquid form called Z Natural then this will not be
Zeolite is a mineral found in volcanic
soil that was deposited in lakes and
the sea and has been used for over
a thousand years in Asian medicine.
times a day. One of
symptoms of allergy. Once the heavy metals
curcumin (Curcumoin 98) is from Lemonburst
have been removed it also appears to reduce
(01273 558112), it is cheaper than the one from
The Really Healthy Co. but still a very goodproduct, several capsules a day is fine.
Professor Pfeifer uses Zeolite alongside a wholeregime of nutritional supplements and herbs as
It is also possible to listen to Professor Pfeifer’s
well as diet and gets some very good results. I
2005 lecture about his protocol in connection
was particularly interested to hear that he
with prostate and breast cancers if you go to
advises the use of Curcumin, which is a herb
that I have been recommending for a while now
broadband connection. The site is waiting to be
because there is so much research into its ability
updated with his 2007 information on Zeolite.
It was fascinating to hear that initially he was not
Broccoli - super veg
Broccoli is well publicised and well known for its anti-cancer qualities, but now has been reported topossibly help slow ageing too.
New research shows that sulforaphane which is found in broccoli activates antioxidant genes andenzymes in immune cells. Oxidative damage is thought to be the main cause of ageing. Antioxidantsprevent free radicals (supercharged oxygen) from causing this damage.
The professor leading the recent studies commented that "in particular, our study shows that achemical present in broccoli is capable of stimulating a wide range of antioxidant defence pathwaysand may be able to interfere with the age-related decline in immune function."
Seven New Prostate Cancer
Clinical Trial Genetic Risk Factors Identified
Cancer Research UK funded scientists have found
ALPHARADIN - Radium 223
seven new sites in the human genome that are linkedto men's risk of developing prostate cancer. Their
Phase III Randomised Study in the
findings are published in Nature Genetics today
treatment of Patients with Hormone
The scientists from The institute of Cancer Research
Refractory Prostate Cancer
and University of Cambridge
found one gene calledMSMB which could possibly be used in screening for
prostate cancer and disease monitoring. Another of thesites harbours a gene called LMTK2 which might be a
This is a double-blind, randomised, multiple dose,
target for new treatments. The data suggests these
international Phase III pivotal efficacy and safety study
newly identified genetic alterations are present in over
half of all prostate cancer cases. They each increase a
The study treatment consists of 6 intravenous
person's risk of the disease by up to 60 per cent.
administrations of Alpharadin or placebo (normal
There are probably many different factors that influence
saline) each separated by an interval of 4 weeks
the development of prostate cancer, but particular
combinations of genes are thought to play a major part.
Alpharadin (radium 223) is very similar to calcium, so
These results represent the largest number of genetic
that when it is injected into the blood, the body takes
risk factors found in one genome-wide cancer study to
it up in the bones, and especially in bone secondaries.
Because radium-223 is radioactive it then delivers
Dr Ros Eeles, who led the study at The Institute of
radiotherapy to the bone secondaries.
Cancer Research, said: "These exciting results will help
So far, Alpharadin has been compared with placebo
us to more accurately calculate the risk of developing
in a trial of 64 men with advanced prostate cancer
prostate cancer and may lead to the development of
who were all receiving standard treatment in addition.
better targeted screening and treatment."
The drug was very well tolerated with more adverse
The team, collaborating with scientists in the UK and
effects in the placebo group. A large trial, involving
Australia, studied the differences in the genetic make
hundreds of men, is now needed to confirm these
up of over 10,000 men in total. They started by
exciting results. All men will receive best standard
scanning the DNA of men who were thought to be at
treatment for prostate cancer. In addition, they will
higher 'genetic risk' of prostate cancer because they
either get Alpharadin or placebo, and will then be
had been diagnosed with the disease before the age of
61 (1,171 men) or had a family history of prostatecancer (683 men). They then compared these results
with a control group of men who did not have the
Males greater than 18 years of age who:
disease (1,894 men) but lived in similar areas.
Have a confirmed diagnosis of or clinical history
In the next stage, they looked to see if these genetic
consistent with adenocarcinoma of the prostate.
variants could be found more frequently in men withprostate cancer than in men without the disease. They
Serum PSA progression defined as two
studied 3,268 men with prostate cancer from the UK
and Australia and 3,366 men who did not have the
Have multiple skeletal metastases (>2 hot spots)
on bone scintigraphy within previous 12 weeks.
Fellow study author, Professor Doug Easton, director of
Are taking regularly any analgesic medication for
Cancer Research UK's Genetic Epidemiology Unit at
cancer related pain (>level 1) or had treatment
the University of Cambridge continued: "In comparison
with EBRT for bone pain within previous 12 weeks.
with other cancers such as breast and lung cancer, we
No intention to use cytotoxic chemotherapy within
understand little about how prostate cancer develops.
These results will greatly improve our knowledge of this
Willing and able to comply with the protocol,
Harpal Kumar, chief executive of Cancer Research UK,
including follow-up visits and examinations.
said: "These results are a breakthrough in our efforts to
understand men's susceptibility to prostate cancer.
Thanks to the international collaboration of so many
Bristol > Southampton > Taunton > Manchester
scientists, and this huge advance in technology, we can
Cardiff > Plymouth > Guildford > Leeds + others
now trawl through the human genome to discover so
450 patients will be randomised in a 2:1 ratio
much more about prostate cancer – the most commoncancer to affect UK men.
Co-ordinating Investigator (contact)
Christopher Parker, M.D., Consultant Oncologist
"We hope these findings will help us illuminate some ofthe main difficulties faced by doctors and researchers
in diagnosing and treating prostate cancer, so in combi-
nation with other advances we can eventually beat it."
Royal Marsden Hospital, Downs Road, Sutton SM2 5PT
Older men with prostate
E R E C T I L E
cancer can Watch and Wait
DY S F U N C T I O N
Men in their 70s and older who are diagnosedwith early stage prostate cancer can safely
Daily Cialis should soon
"watch and wait" because they are not likely todie of it.
The Indianapolis drug company, Eli Lilly, has
Research findings at the Cancer Institute of New
recently had US and European approval to market
Jersey were presented by Grace Lu-Yao, They
a once-daily formulation of Cialis, in dosages of 2.5
confirm the widely held belief that prostate
milligrams and 5 milligrams, that will allow men to
cancer rarely kills men if it strikes late in life,
attempt sexual activity any time between doses.
something else will kill them first. Her study ofmore than 9,000 older men with prostate cancer
Lilly said the low-dose daily formulations "may bemost appropriate for men with erectile dysfunction
that had not spread showed that just 3 to 7
who anticipate more frequent sexual activity (e.g.
percent of the men with low or moderate-grade
twice weekly) and without regard to timing of
The widely used treatment has been sold world-
associated with significant side effects, our data
wide since 2003 in dosages of 5 mgs, 10 mgs and
can help patients make better informed decisions
20 mgs, and taken as needed. Those dosages
about the most appropriate approach for them
provide effectiveness for up to 36 hours.
and potentially avoid treatment without adversely
‘’In clinical trials, when taken without restrictions on
the timing of sexual activity, Cialis for once daily
use improved erectile function over the course oftherapy," Lilly said in a release.
men if it strikes late in life….
Levitra suitable for men with
She stressed that ‘’men who choose not to
Bayer, the drug company who market Levitra, says
undergo treatment should be carefully watched
that its impotence pill could be suitable for use in
to make sure their cancer does not spread or
men with dyslipidaemia, based on data presented
at the European Association of Urology Congress
Whether to treat men with prostate cancer,
because the disease often comes in a slow-
The 12-week placebo-controlled study involving
growing form, has been debated by doctors for
about 400 men who were also taking statins,
successfully treat ED, even in men with a serious
Eventually 2,675 of the men in her study, did get
treated for the cancer, with either surgery,
commented Ian Eardley, honorary senior lecturer at
chemotherapy, hormone therapy or radiation, but
St. James University Hospital in Leeds, UK.
they waited on average more than 10 yearsbefore treatment.
3 Drugs - Dosages & Results
Salvage Radiation Therapy
25 mg, 50 mg, and 100 mg tablets. Most
patients begin using the 50 mg pill and either increase
showed radiation therapy can help save the lives
or decrease the dosage based on drug toleranceand / or effectiveness. Recommended taking Viagra 1
of men whose PSA has begun rising following a
hour prior to sexual activity – lasts approx. 4 hours.
radical prostatectomy, a sign the cancer has
5 mg, 10 mg, and 20 mg tablets + new 2.5mg.
It is recommended that you start out using 10 mg
tablets and either increase or decrease the dosage
School of Medicine in Baltimore said ‘’So-called
salvage radiotherapy reduced the risk of dying
Traditionally, Cialis tablets can be taken anywhere
from prostate cancer by more than 60 percent’’.
from 30 minutes to 12 hours prior to sexual activity –lasts approx. 17 to 36 hours.
Prostate cancer is the second leading cancer
2.5-mg, 5-mg, 10-mg, and 20-mg. Most
killer of men after lung cancer. Globally, some
people start out on the 10 mg pill and either work their
782,600 men will be diagnosed with the disease
way up or down depending on the results achieved.
Levitra should be taken anywhere from 25 minutes to1 hour prior to sexual activity – lasts approx. 5 hours.
e mail: email@example.com
and relate to the efficacy of diagnosis and the characterisation of the type of prostate cancer (particularly the
recognition of aggressive cancers) and the identification of procedures for satisfactory prediction of outcomes.
New “markers” and new “predictors” are periodically reported in the literature, but there seems to be little transla-
tional research aimed at their evaluation and subsequent translation into clinical practice. This applies both to pre-
dicting the need for biopsy, and identifying the most appropriate type of treatment (including palliative treatment)
for a particular patient. What are our views on research priorities? We must define our views and express them.Treatments and their Availability
We constantly hear of differences in the availability of treatments in different regions of the country, and
differences in interpretation of guidelines within different GP practices. As a Federation we should be in a position
to collect information, and express our views.
It will take time for the Federation to establish sufficient credibility and momentum to achieve optimal treatment for
our prostate cancer community. The inaugural meeting marks a first step. By acting in concert with organisations
having similar aims we can, together, increase the pace of change.
by Sandy Tyndale-Biscoe of PCaSO
by Mike Lockett of PCS
It is a key aim of the Federation that it should act as a
Europa Uomo (European Man) is a coalition of (currently)
channel for Advocacy – to represent the considered,
twenty national patient led support organisations from
collective voice of the million or so patients throughout the
within the European Union. In their own countries these
country, whilst in no way inhibiting the rights of individual
organisations operate independently from Europa Uomo,
groups to express their own opinions.
but subscribe to the view that cooperation and partnership
There are many channels by which patients’ voices might
with other patient organisations will strengthen their voices
be heard. Formal examples include the Prostate Cancer
at both a national and European level. Its full manifesto
Charter for Action, the Prostate Cancer Advisory Group,
representations to NICE, participation in the National
cancerworld/home.aspx?id stato=1&id sito=4
Among its aims are patient advocacy, appropriate early
anticipated consultation in the revised Prostate Cancer Risk
detection, quality of life, individualised treatment and
European level in organisations such as Europa Uomo.
To this extent Europa Uomo is almost a blueprint of how
At present, patients’ voices are heard in these fora on an ad
the Prostate Cancer Support Federation (PCSF) is looking
hoc basis. A classic example is in the Charter for Action,
to operate by bringing the combined voice of our individual
where I, representing PCaSO, because it was originally the
support groups to bear at a national level.
only signatory that was a patient-led organisation, find
Europa Uomo is beginning to have an impact at the
myself representing, or assumed to represent, the views of
European Parliament level which in turn will help our
patients throughout the land. This is not only unfair, it is
efforts nationally. Many medical organisations have shown
quite dangerous. I could get it horribly wrong. Naturally, I
their direct support by looking to work with Europa Uomo.
feel that the views of patients are safe in my hands, and so
Prominent among these are the two leading professional
long as the only people objecting are those whose actions
pan-European societies EAU (European Association of
we wish to change (e.g. the Dept of Health, and the major
Urologists) and ESMO (European Society for Medical
cancer charities), I’m confident that nothing is basically
Oncology), which have many UK clinicians among their
wrong. On really controversial issues, such as PSA based
membership. Europa Uomo has established a Scientific
screening, I, as a mild sceptic, try to steer a middle line
Committee drawing on experts from EAU and ESMO
(“a man should know his PSA – it’s an instrument on the
whose function is to keep us up to date, provide advice
dash-board of life”). But I’m conscious that I’m basicallyself-appointed, and at any point someone could stand up
and to act as a “sounding board”.
and say “What gives you the right to claim that you
PCSF has close ties with Europa Uomo. Both PCaSO and
represent me on this subject?” And I’d have no answer.
PSA (Central England) have been involved with Europa
Further, the ad hoc nature of this form of representation
Uomo since its inception (legally established in 2004).
could result in more than one conflicting view being peddled
More recently as PCSF has developed, I have, as a
as the patients’ position in different fora.
steering committee member and Chairman of my local
The Federation should provide a partial answer to this
dilemma. Details will have to be worked out, but it is at least
Uomo at their March 2008 General Assembly in Milan.
feasible that we could devise a process whereby one or
The Secretary, and a driving force behind Europa Uomo,
more members of the prostate cancer patient community,
is Prof. Louis Denis, an eminent urological oncologist who
whose views are trusted, could be “elected” to represent
is author or co-author of over 40 books and more than 300
the Federation, and thus UK patients, in these various fora.
publications in scientific journals. Significantly he is also a
It can’t be worse than the current situation. Join, and you’ll
prostate cancer patient and we welcome him as one of our
guest speakers at the inaugural conference.
This newsletter is providing news, information, personal memoir and opinion about prostate cancer. It
also reports, quotes and cites published medical views and research findings about prostate problems. Anyone who wishes toembark on any dietary, drug, exercise or other lifestyle change intended to prevent or treat a specific disease or conditionshould first consult with and seek clearance from a qualified health care professional.
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