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Some Home Truths for Urologists and Patient Groups at PCa17
Last week we reported on the very successful PCa17 conference in Vienna.  One of the keynote speakers was Prof. Louis Denis.  He probably won’t like being referred to as an elder statesman of the EAU, but when he gets up to speak at a health professional conference those assembled pay close attention.  In his address, Prof Denis spoke from multiple perspectives.  A leading surgeon, a prolific scientist, a long-term survivor of prostate cancer and heavy-weight hitter on the international medical and patient stages, Prof. Denis is not known to “pull his punches” – he talks very directly and is one of the most effective advocates.  And so it was in Vienna – he had five proposals for the conference regarding prostate cancer:
• That they had to invest in building future professional competence
• That doctors must practice a multidisciplinary professional approach to PCa healthcare
• That the medical profession had to train the trainers in their national languages
• They had to promote research and sub-specialities in imaginative and innovative ways
• That there was now an opening for a real doctor/patient partnership.

The role of the various stakeholders in PCa management was reviewed: Government, insurance companies, health professionals, pharma companies, cancer leagues, consumers and patients (including rights and obligations and the position of carers).  He called for a modern (future) management of prostate cancer which he called Precision Medicine and he argued strongly for a balanced integration of treatment and community care.

Prof. Denis reviewed the way he envisaged acute and chronic care might be provided in future in a holistic manner and his 5 take-away points stated the Europa Uomo expectations of health professionals and patients. 
For the full slide presentation which goes with Prof. Denis’s address click here.


Sex and Prostate Cancer
Surgery, radiation and hormone manipulation treatments for prostate cancer all involve risk and/or actual impairment of sexual function.  Of course, the so-called “side-affects” are not really side-affects they are the real affects in terms of quality of life of the prostate patient.  Some of these are thankfully temporary but many are permanent.  Prostate cancer treatments which affects a man’s ability to have erections and enjoy sexual intercourse also affects their partner.  In the case of hormone manipulation (Androgen Deprivation Therapy) not only are erections affected but the treatment also affects the man’s libido which means that he is not interest in any sexual activity.  The overtreatment of many, many men since the introduction of PSA testing as a de facto screening tool, has meant that these men and their partners have experienced major damage to their sex lives.  In those cases where sexual function is not impaired men can find that their sexual lives are nonetheless affected.  The article below is from the UK newspaper/online site The Guardian and it explores the affect that a nerve-sparing prostatectomy had on a man’s orgasm.

Over the coming weeks we will try to address the many ways in which PCa treated men and their partners may tackle their sexual issues, from both the physical and psychosexual standpoint.  We also invite any men or their partners to provide a personal account – on a strictly anonymised basis – tell us of your experience, how the affects of treatment have impacted on your sex lives.  We can learn much from one another.   If you have a story you are prepared to have published anonymously in Update please write in full confidence to the editor, John Dowling, at euomosecjd@gmail.com.  Only John has the password to this account and he has been trained by the Irish Cancer Society in the application of confidentiality protocols.

My life in sex: ‘The orgasms are not as intense without a prostate’
The 68-year-old who had a prostatectomy

My partner and I got together in our mid-40s. We married after seven years and were enjoying frequent, passionate sex, until at 67 I was diagnosed with prostate cancer. My partner was more worried about the threat to my life, whereas my main concern, after the initial shock, was for our sex life, which until then had been idyllically constant.
The full prostatectomy was successful, with no spread of cancer, but although we were sharing intimate, non-penetrative sexual activity from about six weeks after the surgery, the prognosis for a return to full male potency post-op is not good, particularly at my age.
Two months after the operation, the post-prostatectomy NHS team introduced me to the vacuum erection device (VED) – a vacuum pump and a tight rubber ring that fits around the base of the penis. Using this alongside the drug Cialis, I am able to create and maintain an erection. It wasn’t easy at first, but we laughed off issues with timing. After a couple of months’ practice, aided by the patience of my partner, we became quite skilled, and a year later we are able to have pretty satisfying and intense sex every five to seven days.

OK, VED-assisted sex requires setting a specific time for intercourse, so spontaneous sessions are out. And the male orgasm is not as intense sans prostate. It’s been over a year since surgery, and we still hold out a little hope that unassisted sex may be possible again. But this has become gradually less important to us. After all, at 68, we are probably having as much sex or more than most people our age.

Erectile Function Recovery After Surgery in Young Men with Low-risk Prostate Cancer: Probably Not Just a Matter of Age
The incidence of low-risk prostate cancer (PCa) has increased throughout the last few decades mainly because of the widespread use of PSA testing.  In this context, data collected over many years have confirmed the overall safety of a prospective monitoring strategy for these patients.

The thinking behind active surveillance (AS) management is to reduce the physical burden (morbidity) associated with potential overtreatment for individuals with low-risk indolent disease.  A significant, if minority, proportion of patients with low-risk PCa initially managed with AS may eventually undergo radical treatment either because of disease progression or for personal preference related to psychological issues.  It has been suggested that in these cases, the delay from diagnosis to treatment negatively impacts on functional outcomes of radical prostatectomy (RP).     This could be particularly true for young men (typically, those with a strong interest in sexual functioning); indeed, several studies widely confirmed the significant relationship between age and the probability of erectile function (EF) recovery after RP, suggesting that delaying surgery in young men may eventually reduce their chance of EF recovery as they grow older. 
Read more: http://www.europeanurology.com/article/S0302-2838(17)30726-1/fulltext

Active Surveillance - A ten year journey
Monitoring low-risk prostate cancer rather than immediate intervention is not a new concept.  In 2004, Johansson and others published results for a 20-yr observational cohort study documenting the natural history of untreated, localized prostate cancer.  They concluded that most prostate cancers diagnosed at an early stage have an indolent (largely inactive) course, although some may progress to active disease beyond 15 years of follow-up.  The researchers conducted a retrospective (looking backwards) population-based analysis of 767 men with clinically localized prostate cancer in the state of Connecticut, USA.  They found that men with low-grade prostate cancers had a minimal risk of dying from prostate cancer during 20 years of follow-up.  These studies set the stage for the concept of “active surveillance.”  Since many men with low-risk prostate cancer are unlikely to experience disease progression, some prefer to be watched rather than undergo immediate surgery and radiation with the attendant risks of complications.

Centres offering active surveillance have developed criteria defining low-risk prostate cancer that usually restrict candidates to those with low-volume (≤25% of cores) and low-grade disease (New Score Group 1 = the former Gleason 3+3 score).  Several hundred men have been followed for more than a decade.  Unfortunately, clinicians offering active surveillance have encountered a new problem: what is an appropriate protocol and how long should a patient pursue this strategy?  How often do patients remain on a particular protocol?  This problem does not arise following surgery or radiation.

Patients undergoing radical treatments are usually followed with serial PSA measurement.  A rising PSA implies disease progression, and subsequent treatments are offered.  Monitoring men on an active surveillance protocol is slightly more complex.  PSA is often monitored several times per year and men are often encouraged to undergo repeat biopsies and imaging with pelvic magnetic resonance imaging (MRI).  Disease progression is not often easy to identify.  Some men are comfortable with this approach, while others abandon it, choosing to either undergo definitive treatment or simply manage their disease with watchful waiting.

In the current European Urology, Van Hemelrijck et al present results for a model that explores the outcomes for patients who elected to undergo active surveillance in Sweden during the past 25 years.  They used data from multiple registries to assemble a cohort of men with low-risk prostate cancer and to calculate the probabilities that these men stayed on active surveillance or transitioned to another strategy.  Their analysis provides dramatic insights and their figure offers patients visual cues concerning their likely trajectory.

Their results confirm that approximately 25% of men of all ages will abandon active surveillance after 2–3 years of follow-up.  After that there is constant erosion, so that by 10 years only 25% of men remain on active surveillance. Younger men are more likely to transition to some type of definitive treatment, while men older than 70 years are likely to abandon active surveillance in favor of watchful waiting.  The recent publication of the PROTECT trial results confirms these findings.  Approximately 25% of the men in the active monitoring arm had abandoned active surveillance by 3 years, and 55% had received a radical intervention by 10 years.  None had transitioned to watchful waiting, since this was not part of the trial design.

Active surveillance is an appropriate treatment for many men with low-volume, low-grade prostate cancer.  However, men embarking on this treatment strategy should recognize that most will transition to an alternative strategy within a decade.  Van Hemelrijck et al have provided men with an easily understood figure to grasp these concepts.  Clinicians and researchers should seize this insight by developing active surveillance protocols that extend over 10 years.


Europa Uomo Board meeting: Morning of 27 September in Brussels.

   EMUC, Barcelona, 16-19 November 2017
   EAPM, Belfast, 27-30 November 2017

Belgian Prostate Patient Group US Too hold their walk this weekend
Walking against cancer became a tradition after almost two decades. Our next discovery trip for 60+ patients and carers happens next 30 September 2017.  Still popular as we keep it the Antwerp way: coffee and Danish after the two hour walk and the lottery for an Antwerp diamond.

Irish Prostate Cancer Support Group - Men Against Cancer – held successful walk along Dublin’s seafront to raise funds
More than 60 MAC members and supporters had a great walk at lunchtime on Saturday 16th.  The rain kept away until the walk was over, whereupon everyone adjourned to the Clontarf Yacht Club which is near the end point of the walk.  The club served tea and coffee to the walkers and some even broke into song in celebration .

The MAC Treasurer, Tom Hope, had a very broad smile as he made off with a bulging briefcase stuffed with various envelopes containing collections made by MAC members and friends before the walk.  But the significant innovation for MAC this year was an online fundraising site which brought in a significant level of funds from all over the world as relatives and friends from overseas joined in support with their donations.  Many more contributed by way of direct donations to MAC members and the money is still coming in. 

MAC is one of the last of the small spenders - but the financial success of the walk means that with others sources of funds we will have the wherewithal to have an appropriate programme next year to mark our 25th anniversary.
Doctors’ Notes – Allegedly unedited notes by doctors on patient charts

Patient has left his white blood cells at another hospital.

Patient's past medical history has been remarkably insignificant with only a 40 pound weight gain in the past three days.

Patient had waffles for breakfast and anorexia for lunch.


Follow-up of Prostatectomy versus Observation for Early Prostate Cancer
Surgery or observation?  731 men with localised prostate cancer were randomly assigned to surgery (radical prostatectomy) or observation.  After nearly 20 years of follow-up among those men who had surgery did not have significantly lower deaths from all causes or from prostate cancer than those who had followed the observation pathway.  Those who had surgery, however, had a higher frequency of adverse events than those who had observation, but on the other hand they had a lower frequency of treatment for prostate disease progression, mostly for asymptomatic, local, or biochemical progression.
Urinary incontinence and erectile dysfunction were each greater with surgery than with observation through 10 years.  Disease-related or treatment-related limitations in activities of daily living were greater with surgery than with observation through 2 years.
These study results are part of PIVOT (Prostate Cancer Intervention Versus Observation Trial).
See the full article in the NEJM:

Half of Urologists Unaware of New, More Sensitive Prostate Cancer Tests
Half of urologists surveyed were unaware of newer, more sensitive biomarker tests for detecting prostate cancer, according to a survey of 300 of the specialists worldwide.  The new tests reduce the need for invasive prostate biopsies.  They also allow doctors to identify early-on those patients whose cancer is likely to turn aggressive.
Dr. Nicolaas Lumen, head of the Urology Clinic at University Hospital Ghent in Belgium, presented the findings at the Global Congress on Prostate Cancer in Lisbon, Portugal, June 28-30.  He noted that while responses to the survey came from around the world, most of the participants were European urologists.
His keynote presentation, “Biomarkers in 2017”, revealed that nearly 50 percent of urologists do not recommend a diagnostic biomarker test to their patients.  The reason for this low percentage, according to the survey, was that many don’t know about the tests.  Ninety percent of the 300 urologists said they would use the tests if the diagnostic tools allowed them to rule out cancer with a very high level of certainty, however: “The new generation biomarker tests are more accurate to identify clinically significant prostate cancer and are valuable tools for further risk assessment to determine whether or not to proceed with biopsy,” he added. "[Dr. Lumen is associated with a company MDxHealth which markets a proprietary biomarker.]"
See full article:


Side effects of Prostate Cancer Treatment – Urinary Incontinence and Impotence
By clicking on the link below it will take you directly to a 4,5 minute video presentation made in the US.

Incontinence Exercise Programme
The link below will take you to a You Tube video lasting 2 minutes 20 second from Australia which discusses survivorship with the aid of an exercise programme to combat incontinence.

Big Pharma Spends on Share Buybacks, but R&D? Not So Much – NY Times
Under fire for skyrocketing drug prices, pharmaceutical companies often offer this response: The high costs of their products are justified because the proceeds generate money for crucial research on new cures and treatments.
It’s a compelling argument, but only partly true.  As a revealing new academic study shows, big pharmaceutical companies have spent more on share buybacks and dividends in a recent 10-year period than they did on research and development.  The working paper, published last month by the Institute for New Economic Thinking, is entitled “U.S. Pharma’s Financialized Business Model”.
The paper’s five authors concluded that from 2006 through 2015, the 18 drug companies in the Standard & Poor’s 500 index spent a combined $516 billion on buybacks and dividends.  This exceeded by 11 percent the companies’ research and development spending of $465 billion during these years.

NY Times Article: https://www.nytimes.com/2017/07/14/business/big-pharma-spends-on-share-buybacks-but-rd-not-so-much.html
Source Article: https://www.ineteconomics.org/research/research-papers/us-pharmas-financialized-business-model


Wednesday 27 September 2017 - European Parliament Brussels
More information and registration at http://epad.uroweb.org/

Conferences:  The General Assembly in 2018 will take place in Malahide, near Dublin the capital of Ireland.  The date of the GA will be PM Friday 9 June.  There will be a delegate event on the following day, June 10 until late lunchtime.  This will allow for afternoon departures from Dublin Airport.  Attached to this Update are the list of airlines who currently fly to Dublin Airport.  Those who wish to extend their stay to Sunday or Monday will be offered the conference rate.  Men Against Cancer will have a suggested programme for those remaining on after the GA.

Vienna Patient Seminar 3 - Prof. Stephan Madersbacher
Oligometastatic Prostate Cancer - How should it be treated?
Before we consider what kind of treatment should be offered to patients with Oligometastatic Prostate Cancer perhaps we should pause for a moment to ensure that we have some basic understanding of Oligometastatic Prostate Cancer.  Without getting too technical this term oligometastatic applies to isolated prostate cancer lesions which are located away from the prostate bed - they are small in number and not sufficiently widespread or numerous to warrant designation as metastatic.  As to how many lesions you can have and still be regarded as oligometastatic may seem a bit like wondering how many angels will fit on the head of a pin so we can leave that to metaphysics.
Prof. Stephan Madersbacher gave a comprehensive and well argued presentation in Vienna on 10 June where he argued that oligometastatic prostate cancer warranted local therapy.  He compared the approaches used in colorectal, renal and glioblastoma cancers where cytoreductive surgery and/or radiotherapy improved survival and asked why should this not be offered for oligometastatic prostate cancer?

The rationale for local therapy is that it eliminates therapy-resistant, potentially metastatic cell clones and can be seen as the first step in a multi-modal therapeutic concept. 

Prof. Madersbacher addressed directly the question of whether radical prostatectomy should be performed on men with oligometastatic prostate cancer.  He presented the results of a number of studies on this matter and suggested that this approach, though a new therapeutic concept has acceptable morbidity and avoidance of local complications.  But he admits that the impact on overall survival is unclear.  Nonetheless, this approach is increasingly used although regarded as experimental, but a randomised clinical trial (RCT) is underway and some definitive answers should emerge in about 2-3 years.

The full set of slides of Prof. Madersbacher is attached to this Update.

July Board Meeting Report:
• Responsibility for the 7 projects approved at the General Assembly have been assigned to various Board members.
• The Board has accepted proposals from Men Against Cancer for the venue and arrangements for the GA in 2018 in Malahide, Dublin.
• A programme of attendance and representation at various conferences and congresses is being finalised for the period September 2017 until March 2019.  This will be a rolling programme to be adjusted every 3 months.
• Board authorised the Chairman to proceed with finalising a Memorandum of Understanding with the European Cancer Patient Coalition, Europa Uomo and Fight Bladder Cancer on Patient Awareness.
• Our Swedish colleagues are preparing a suggestion list of money-raising ideas for member organisations.
• Europa Uomo is sending 5 representatives to attend the Prostate17 Conference on 14-15 September being held by the EAU.
• EPAD (European Prostate Awareness Day): The Board approved the final programme for a joint event with the EAU on 27 September in the European Parliament.

News Items:
• Next year our Irish affiliate, Men Against Cancer, is marking the 25th year since its founding in 1993, with a number of events, one of which will take place in association with the GA in Dublin next year. 
• The Tackle AGM and Conference was held in mid-June near Birmingham in the UK.  Some 85 members attended, with representation from thirty-one support groups.  It was noted that Tackle had made considerable progress with growing the Federation, now with 87 support groups, and in its campaigning efforts, where the Tackle is more noticeable than ever before.
The conference had the theme of “Trials and Tribulations” and was very well received, with good feedback on the sessions.  The highlight for many was the informative and humorous session on the Management of Male Incontinence given by Julian Shah, a Consultant Urological Surgeon from UCLH and Victoria Muir, a Clinical Physiotherapist on some of the more intimate side effects many men with prostate cancer endure! 
Generously supported by Prostate Cancer UK (PCUK), many felt it was one of the best events in recent years. 
The link to Julian Shah's and Victoria Muir's presentations is below: http://www.tackleprostate.org/uploads/files/The_Management_of_Male_Incontinence.pdf  



A Protein That Both Promotes and Prevents Prostate Cancer

Researchers at the University of Adelaide in Australia have found that Grainyhead-like protein 2, called GRHL2, plays a dual role in prostate cancer by both promoting and preventing cancer growth. It also was found to be a regulator of the androgen receptor (AR), which is essential for the development of prostate cancer.
While being key to the functioning of AR, this protein also inhibits cellular mechanisms that are necessary for prostate cancer cells to spread to other organs.
The study, “Novel androgen receptor co-regulator GRHL2 exerts both oncogenic and anti-metastatic functions in prostate cancer”, published in the Journal Cancer Research, provides new insight into the underlying mechanisms of aggressive castration-resistant prostate cancer and could lead to new treatment approaches.

Original Article: http://cancerres.aacrjournals.org/content/77/13/3417
News Report: https://prostatecancernewstoday.com/2017/07/10/prostate-cancer-regulator-of-androgen-receptor-found-in-form-of-grhl2-protein/


Abiraterone with ADT and Steroid Improves Survival in Castrate Resistant Prostate Cancer
A combination of androgen-deprivation therapy (ADT), abiraterone, and prednisolone is associated with improved survival among patients with locally-advanced or metastatic prostate cancer, according to the industry-funded STAMPEDE trial presented at the American Society of Clinical Oncology's annual meeting and published in the New England Journal of Medicine.

Abiraterone blocks the synthesis of androgen.  Most ADT treatments are also designed to block testosterone/androgen production, and also, preventing any unblocked androgen from getting to prostate cancer cells.  Prednisolone is a common steroid which prevents inflammation.  It is marketed under more than 2 dozen trade names.

In the STAMPEDE trial, researchers enrolled 1900 men with newly diagnosed, locally advanced or metastatic prostate cancer, or relapsed disease with high-risk features.  Patients were randomized to receive androgen deprivation therapy either with or without abiraterone acetate and prednisolone.  They were treated for up to 2 years.
Three-year survival rates were significantly higher in the combination therapy group than in the ADT group (83% vs. 76%).  There was a wider gap favouring combination therapy in terms of 3-year rates of treatment failure-free survival (75% vs. 45% for ADT alone).

See also report below on the LATITUDE trial with castration-sensitive men who also benefitted from this approach to the treatment of their condition.

Similar findings re Abiraterone in the LATITUDE trial for castration sensitive patients
At the same conference as the presentation of the STAMPEDE trial the LATITUDE trial results were also presented.  1200 men with metastatic, castration-sensitive prostate cancer were randomized to receive either ADT or ADT plus abiraterone acetate and prednisone.  At a median 30 months' follow-up, 3-year survival rates were higher in the abiraterone group (66% vs. 49%), and median progression-free survival was twice as long (33 vs. 15 months).  Patients taking abiraterone had higher rates of grade 3 high blood pressure (hypertension) and excess potassium in the blood.

Median is a term which indicates that it is the half-way point. Half or the patients had results less than the median and half were above the median.  It is not an average.

Incidence Rate of Prostate Cancer in the U.S. declines by 53% 1993-2013. Is This

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