Fed nesletter issue1 - may 08web

Prostate Cancer
Suppor t Federation
Inaugural Conference
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.
life threatening, 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 prostate cancer. 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 Hormone Therapy
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 recommendation is
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 Study Design
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 Eligibility Criteria
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 Study Centres
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
cancer can Watch and Wait
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.
be available
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
High Cholesterol

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
Viagra: 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 Cialis: 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 Levitra: 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 protected]
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.
Advocacy by Sandy Tyndale-Biscoe of PCaSO
Europa Uomo 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.
General Disclaimer
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.

Source: http://www.tackleprostate.org/uploads/files/ProstateMatters_1.pdf

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