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.
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.”
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.
The 2019 General Assembly of Europa Uomo will be held on Friday 14th and Saturday 15th of June in the Lloyd Room of Hornton Grange situated next to the Edgbaston Park Hotel where we are lodged. The official language of the General Assembly is English. The purpose of the meeting includes the presentation of the Board’s report for the year, the approval of the accounts and budget and election of members to the Board of Europa Uomo.
Thursday, June 13th 2019: Board arrives in Birmingham
Friday, June 14th 2018: Morning: Board meeting / GA members arrive in Birmingham Lunch Afternoon (14:00 – 18:30): General Assembly Evening (19:30): Dinner in a traditional pub
Saturday, June 15th 2018: Morning: Masterclass Europa Uomo Lunch (end 14:00) Departure
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.
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.”
Europa Uomo has joined with European urological associations, scientific experts, policy makers and other patient organisations to call for national screening programmes for prostate cancer across Europe.
In a new policy paper, launched in the European Parliament with support from MEPs, the organisations say that the European Parliament and EU member states should ensure that the European Commission considers whether PSA-based screening should be implemented at European level.
The paper was issued jointly by Europa Uomo, Cancer Control Joint Action, the European Cancer Patient Coalition and the European Association of Urology (EAU) at a special event to mark European Prostate Cancer Awareness Day (EPAD). “The European Union can no longer continue to overlook the most common cause of cancer in men in Europe,” says the policy paper.
Action is urgent in the light of new evidence from the European Randomised Study of Screening for Prostate Cancer that PSA screening reduces prostate cancer mortality by 21%. “As such, PSA screening results in mortality reduction are obviously better than in breast or colon cancer screening,” says the paper.
Organisations such as Europa Uomo are playing an important role in representing the views and needs of men with prostate cancer to the pharmaceutical industry, says Chairman André Deschamps.
Having recently attended patient advisory meetings of the drug companies Janssen and Ipsen, Deschamps believes that the events – attended by representatives of people with many types of cancer and other illnesses – are helping companies better understand patient perspectives.
“The content of those meetings is seldom about drugs,” he says. “It’s about providing patient information that is genuinely useful and understanding the real needs of patients and how drugs and their side effects can impact them.”
Politicians and policy makers across Europe need to change strategy to improve diagnosis, treatment and quality of life for men with prostate cancer. That is the message from Europa Uomo Chairman André Deschamps, in an article expressing concern that prostate cancer mortality rates are no longer decreasing across Europe.
Deschamps points out that in some countries there is a significant increase in the number of cancers being detected at a late stage. A recent Europa Uomo questionnaire, with responses from 24 European states, found that less than 50% of men are aware of prostate cancer and that PSA-led early detection is promoted by healthcare professionals in only half of the countries.
“We as patients urge our politicians and policymakers to adopt a change in strategy,” writes Deschamps, in an article for Health Europa Quarterly. He calls for public awareness campaigns, active encouragement of PSA testing (within EAU guidelines) and treatment in multidisciplinary cancer centres.
The Latvian prostate cancer patient organisation organised Movember Latvia activities to inform men about when they should go to a doctor and what to do if they found they had cancer. During the month, the Movember Latvia messages gained a high profile in the media and at sporting events.
As the month started, Helmuts Bēķis, a board member of the prostate organisation in Latvia, was interviewed during one of the breaks in the hockey game between Dinamo Riga and Lokomotiv Jaroslavl. The following day, board members and doctors again spoke about prostate cancer at a press conference in the city centre. One of the sponsors for the press conference was the company Husqvarna, whose motto for men is “Check your tools”.
On 21st November there was a discussion meeting involving the urologic association, patients and media on the subject of “What to do next when you find out that you have a cancer”. On same day there was a Movember Latvija bus ride through Riga city. The message was: “Health should always be most important, so supporting the Movember Latvia movement we invite loving men – fathers, brothers, sons – to remind you to check and take care of your health.”
A Europa Uomo representative has met with cancer advocates, health professionals and politicians in Armenia, with a view to encouraging the formation of an organisation for men with prostate cancer in the country.
Europa Uomo Vice Chairman, Stig Lindahl from Sweden, travelled to Artsakh, a northern province of Armenia Northern Armenia, for a meeting on male and female cancers. Travelling with representatives from Europa Donna, the European breast cancer coalition, Stig Lindahl gave a talk on living with prostate cancer in different parts of Europe and met with attending members of the public and doctors.
The next day Stig Lindahl met with the provincial Prime Minister. This was followed by a meeting with doctors, nurses and patient representatives about the possibility of establishing a prostate patient organisation in Armenia.
Stig said: “I discussed next steps with Nvard Kocharyan from Europa Donna and her team, and they are hoping to progress matters in the coming months with a view to making an application to join Europa Uomo in 2019.”
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