Europa Uomo is the European advocacy movement for the fight against prostate cancer. Europa Uomo's objective is to increase awareness on prostate cancer in Europe. Europa Uomo is a European coalition of patients supporting groups for prostate diseases in general and prostate cancer in particular.
Support groups for men with prostate cancer in Bulgaria, Iceland, Armenia and Latvia will be put forward for Europa Uomo membership at the forthcoming General Assembly in June. The Europa Uomo Board considered the organisations’ applications at its recent meeting – the first in its new offices in Antwerp.
“We’re delighted that our visits to these countries and our work with these organisations has paid off, and that our European family is growing,” says Board member Stig Lindahl. He has worked with Europa Uomo’s Prostate Cancer Patient Officer Izabella Pawlowska, based in Poland, and fellow Board member Pentti Tuohimaa to expand Europa Uomo’s network of prostate cancer support organisations.
“The provision of effective patient support organisations is very uneven, particularly in eastern and central European states,” he says. “For the past few years Europa Uomo has been seeking to establish an active presence in the region.”
Europa Uomo is working to reinforce the groups by providing access to training, information and expertise. It is also trying to support closer cooperation between members within regions. For many years, for example, Nordic countries have learned a lot from each other though regular meetings and information exchange.
“By including Iceland in this group, all members will gain a lot,” says Stig Lindahl. “Constellations of organisations can be started in both the Baltic and Balkan regions. We can also start regional patient awareness days, supported by healthcare providers, where we share the new information available.”
The Europa Uomo Board meeting also finalised the agenda for the General Assembly, to be held in Birmingham on 14th and 15th June, and discussed developments in Europa Uomo communications.
A new analysis of global data on prostate cancer by the American Cancer Society indicates that incidence and mortality rates have stabilised or declined in most countries over the past five years.
But some European countries, such as Lithuania, Estonia, Latvia and Bulgaria, are not following the trend and are still showing high incidence and mortality. Overall, in 2012, prostate cancer was the most commonly diagnosed cancer among men in 96 countries and was the leading cause of death in 51 countries.
John Dowling, Europa Uomo Secretary, said the research was important and addressed the fact that international comparisons of prostate incidence were difficult because of variations in recording, detection practices, availability of treatment and genetic factors from country to country.
“However, it reinforces our worries about services and support for men with prostate cancer in many countries, and confirms the impact of prostate-specific antigen (PSA) screening on reducing national prostate cancer mortality rates,” he said. In January, Europa Uomo announced it was supporting PSA-based screening programmes throughout Europe, in line with a new policy from the European Association of Urology.
The research, presented to the American Association for Cancer Research this month, examined prostate cancer incidence and mortality patterns across five continents using the most recent data from the International Agency for Research on Cancer and the World Health Organization. Researchers separated out those countries providing high quality and low quality data so that comparisons could be made more accurately.
Among 44 countries with high quality incidence data, prostate cancer incidence increased in four countries over a five year period – with Bulgaria showing the largest increase. The highest incidence rates during the most recent five years were found in Brazil, Lithuania and Australia. The lowest incidence rates were found in Asia.
The highest mortality rates were found in the Caribbean, sub-Sahara Africa and the Baltic states of Lithuania, Estonia and Latvia. The lowest rates were found in Asia.
An ambitious new fundraising campaign asking members of the public to “Cycle to the Moon” has been launched by Europa Uomo’s member organisation in the UK, Tackle Prostate Cancer. The aim is to raise awareness as well as funds.
With a target of raising £250,000, the charity is engaging with cycling clubs to encourage members to raise money for prostate cancer through charity rides throughout the UK. It wants them to collectively ride the 250,000 miles to the moon with a target of £1 per mile being donated.
Alongside Cycle to the Moon, Tackle is promoting a similar “Bike to the Moon” initiative for motorcycle clubs. “Many motorcycle clubs are generous donors to charitable causes and the age profile of many of their members is probably the age when men should be getting tested for prostate cancer,” says Roger Wooton, Chairman of Tackle Prostate Cancer.
The European Association of Urology’s Guidelines Office has formally announced a change in its guidance on how to diagnose prostate cancer. The guidelines now recommend there should be no prostate biopsies without a positive multiparametric MRI beforehand.
The change takes into account recent research, and aims to improve diagnostic accuracy and prevent unnecessary interventions. Speaking at a guideline meeting during the EAU Congress, Professor Caroline Moore, Reader in Urology from University College London, said there was no doubt that standard biopsy in men with a negative MRI can have unfortunate results.
“Side-effects of biopsy are common, and current treatment rates are much higher than recommended,” she said. ““Five-year detection rates of significant cancer in men with negative MRI and no TRUS biopsy are low. I recommend that we hold fire, rather than end-fire.”
According to Europa Uomo’s Secretary, John Dowling, who was at the meeting, a welcome feature of the discussion was the emphasis on the patient being involved in decisions whether or not to perform a biopsy if the MRI proves negative.
Caroline Moore said: “Discussion with the patient is important and I’m pleased to see that in the 2019 EAU Guidelines. It’s a recognition that this is a preference-sensitive decision. A man might prefer greater certainty at the expense of side-effects and expense. Or he might be very confident in the fact we’re not missing the sort of disease that might impact his life and be happier to forego the biopsy.”
Quality of life for men with prostate cancer is a priority for clinicians, scientists and patient groups in the coming year, Europa Uomo’s Secretary told a high level session at this year’s EAU (European Association of Urology) Congress in Barcelona.
Speaking at the European School of Oncology (ESO) Prostate Cancer Observatory meeting, alongside leading urologists and researchers, John Dowling said that profession should have the quality of life of patients with prostate cancer as a foremost concern when deciding on treatment and professional priorities.
John Dowling (right) in conversation with urologist Jeroen van Moorselaar after the ESO Prostate Cancer Observatory meeting
The session allowed leaders in the field of prostate cancer to give a forecast for the next year. They discussed the growing consensus that mpMRI scans should precede biopsy in diagnosis, and patient support for the option of active surveillance.
“Patients are sometimes quite willing to trade off some degree of overall longevity for quality of life and quality of life will improve if some of the things we heard about today become mainstream,” said John Dowling, being interviewed for EAU TV after the session.
Presentations by Europa Uomo at urologists’ international meeting in Barcelona have emphasised the importance of three pillars of action to help men with prostate cancer: increased awareness, early detection and treatment in specialist multidisciplinary centres.
Hundreds of urologists gathered in Spain for the annual congress of the European Association of Urology (EAU). At the start of the event, John Dowling, Europa Uomo’s Secretary, made a presentation outlining the need for change at a meeting organised by the European School of Oncology’s Prostate Cancer Observatory on innovation and care.
On Sunday, he made a presentation at the EAUPatient Information session. He quoted the results of a Europa Uomo survey which indicated that just 48% of men are aware of prostate cancer risks and PSA testing. There was a lack of patient information and offer of active surveillance for low risk prostate cancer patients in Europe, he said.
And he drew attention to the significant impact that metastasis and treatment side effects could have on the quality of life of men living with prostate cancer.
Europa Uomo’s Prostate Cancer Patient Officer, based in Poland, is helping to build new prostate cancer patient organisations in Europe
Europa Uomo is supporting the growth new organisations for men with prostate cancer in Eastern and Central Europe – with the help of a young researcher and campaigner based in Warsaw. For the past 10 years, Izabella Pawlowska has helped with translation and administration for the Polish prostate cancer patients organisation, and in 2018 she began working with Europa Uomo to help build patient representation in other countries.
Izabella Pawlowska pictured at the 2018 Europa Uomo General Assembly in Dublin
She has been working with Board member Stig Lindahl, making contact with prostate cancer patients in countries where there is currently no patient organisation, and offering support to existing organisations that need strengthening.
This is valuable work, says Stig: “By providing a number of good examples from existing organisations in other parts of Europe, we hope they can find a ‘menu’ that is suitable to the environment in their own country.”
Over the last year, Izabella has been working with men from Armenia, Latvia, Slovenia, Romania and Iceland as they attempt to develop support organisations. “Every country has different needs,” she says.
“In Latvia there is a very small organisation, run by just two people with hardly any resources. I’m showing them how things are organised in Poland and other countries. I visited them last year, and they’re now thinking of forming a coalition with five other patient organisations.”
Many of the organisations have no websites or public profile, so much of Izabella’s time is spent searching for contacts. Once contact is established, and a conversation started, Izabella provides information about how other organisations work, and advice on how to raise and find funds.
“The biggest challenges these organisations face is finding voluntary help, finding resources, and also reaching out to men with prostate cancer in smaller towns. In Latvia, for example, it’s proved very hard to move beyond Riga.”
There is a desperate need for such organisations to function well, and provide advice and support to men in their countries. “I think one of the biggest problems in Eastern and Central Europe is that men aren’t getting checked for prostate cancer,” she says. “Many men are worried about going to the doctor. I think campaigns like Movember are beginning to help, but there’s a need for much more awareness raising. There’s also the problem that in some countries the PSA test isn’t easily available. In some countries, like Armenia, it costs almost a month’s salary.”
It’s an uphill battle, but a worthwhile one. And on the positive side, Izabella Pawlowska believes that the language barrier is not what it was. Because of Google Translate, most online materials are easily translatable into every language. The Europa Uomo website can be translated at the push of the red button at the bottom of every page.
“It works,” she says. “It’s easy for everyone to go to the Europa Uomo website and choose their language. This is something I’m telling everyone about.”
A European PSA-based screening programme for prostate cancer is on its way, according to the European Association of Urology (EAU).
Following publication of a new policy paper on prostate cancer screening, published with Europa Uomo and other organisations, EAU has announced it will be making the case for screening at important European meetings.
It will be promoting the issue at the EU’s Innovative Partnership on Action Against Cancer (IPAAC) WP5 meeting on 20th May, and at the Romanian EU Presidency Conference on cancer prevention and cancer monitoring and data use. The hope is to influence cancer control plans of EU member states.
This follows a meeting of European influencers at the European Parliament about the need for population-based prostate cancer screening programmes at a European level. The event, held on European Prostate Cancer Awareness Day (EPAD 19) on 22nd January, was hosted by Members of the European Parliament against Cancer Group. It focused on how early diagnosis will improve outcomes in prostate cancer patients across Europe.
Europa Uomo Chair Andre Deschamps made a plea for a new strategy across the EU, based on increasing awareness, promoting PSA-led screening and treatment in specialised cancer centres.
“Early treatment for prostate cancer lowers the risk of incontinence and impotence significantly, while treatment at metastatic phase has a negative effect on the quality of life,” he said. “There is a big opportunity to improve the quality of life if early detection is achieved in combination with avoidance of overtreatment.”
EAU Policy Coordinator, Michelle Battye, said that urgent action is required to ensure the new Commission is mandated to support EU Member States including prostate cancer screening programmes in their national cancer plans.
Active surveillance – monitoring rather than treating prostate cancer after diagnosis – may put a significant psychological burden on men with prostate cancer, according to a study by one of Europa Uomo’s members, the Danish prostate cancer patients’ organisation PROPA.
PROPA surveyed members who were currently under active surveillance (AS), asking them how worried they were under AS. Out of a response of 191, 4% said they were seriously worried, 33% said they were somewhat worried, and 41% said they were a little worried. Nearly a third said they had regrets about delaying treatment.
The study also found that there was strain on spouses and relationships. Sixty one per cent of respondents said that their sex-life were being influenced.
Niels Einer-Jensen of PROPA points out that this patient view contrasts with data presented by urologists and psychologists, which suggests that AS has little adverse impact on psychological wellbeing. “The impact is not negligible and stronger than expected,” he says.
“The medical profession should take the potential psychological load more into account during counselling,” he says. “A bigger investigation of the load and the reason for the discrepancies between this investigation and previous studies should be initiated.”
Active surveillance – monitoring rather than treating prostate cancer that hasn’t spread – is a good approach for men under 60 as well as older men, according to new research in the Journal of Urology.
The study is significant because previous studies have indicated that younger men and their families are anxious that active surveillance may not be advantageous over time.
The American study compared two groups of men with low volume, low risk prostate cancer. One group began active surveillance when they were younger than 60 years and the other began when they were 60 or older. After six years, the investigators found no significant difference in progression-free survival, treatment-free survival, metastasis-free survival or prostate cancer specific survival.
The authors, from Massachusetts General Hospital in Boston, conclude: “Active surveillance is a safe and effective approach which spares any properly selected men younger than 60 years with low risk prostate cancer from intervention, provides adequate time for intervention if required, and shows durable disease specific survival.”