Last year, Europa Uomo formally put its weight behind the cause of a Europe-wide PSA-based structured screening programme for prostate cancer. Now there are moves to make Finland the first European country to introduce such a structured programme.
Here, Europa Uomo Board member Pentti Tuohimaa from Finland provides an update on the situation.
“A year ago I wrote an entitled ‘Towards Prostate Cancer Screening in Europe’, published in several leading newspapers in Finland. The response was mainly positive and encouraging. One urology professor was very strongly against the proposal, but an officer at the Ministry of Health promised that screening would be included in the programme of the new government, formed at the end of spring 2019. However, prostate cancer screening was not on their agenda.
“On 4th March this year I once again made the proposal, in an article entitled ‘Prostate cancer screening has be initiated immediately’ published by the leading newspaper in Finland. This article was completely based on recommendations by the European Association of Urology (EAU) and Europa Uomo. After that, events have been fast.
“Unfortunately, three urologists and an epidemiologist replied that there is no scientific basis for the screening programme. I asked them for the scientific reasoning behind their opinion – which is fully against that of EAU – but they have not replied. It means that the situation is currently very tense.”
“In March, a member of the Finnish Parliament, Sari Tanus also began to collect signatures from the other 200 members and collected 141 within days. That passes the 100 signatures needed to begin the process of introducing legislation.
Now the legislation is in the hands of Ministry officers and we are waiting for the next step.”
Knowledge of COVID-19 is growing but still sparse. For people receiving treatment for cancer and those weakened by its effects, there is little official guidance – for example on weighing the risk of continuing treatment against the risk of stopping it.
This week the European Cancer Organisation (ECCO) said the COVID-19 pandemic poses a significant threat for cancer patients, who deserve to be protected through immediate action all over Europe.
For cancer patients undergoing active treatment (chemotherapy, radiation or surgery) and people known to be at an elevated risk for complications from infection, ECCO demands that the following procedures are put in place as soon as possible:
Prompt COVID-19 screening of patients in care;
Rigorous implementation, across the health system, of guidelines on quarantining and hygiene standards;
Continuous and clear communication to healthcare professionals and the public about the ongoing situation.
Other sources of information on COVID-19 and cancer
Some general information and advice for cancer patients and survivors is available on the websites of many cancer organisations and charities, including:
Meanwhile cancer patients themselves are gathering and sharing thoughts and information via online groups. In Ireland, cancer patients have started a #voicesofthevulnerable hashtag on Twitter. Let Europa Uomo know of any prostate patients that have started online groups to discuss what the crisis means for them.
The EAU congress in Amsterdam, scheduled for 20th-23rd March has been postponed until 17th-21st July 2020, due to the COVID-19 virus pandemic.
Europa Uomo had planned to announce the results of its EUPROMS study at this conference. The results will now be presented at the re-scheduled event in July instead.
André Deschamps, Europa Uomo Chairman, said: “For the first time, prostate cancer patients have been given the opportunity to speak in a ‘game changing session’ in the main conference room. A press release and conference and EAU TV interview had also been scheduled in April.”
“This would have given prostate cancer patients and our study a lot of attention in the world-wide press and in the medical world. And, we could all refer to it for future use in the EU parliament or at country level. We do not want to lose that opportunity.”
“Therefore, the Europa Uomo Board has decided to withhold the results of the study until the EAU congress in July so that we still have the same speaking slots and media attention.”
“I thank you for your understanding. It would be a shame to not use the efforts of 3,000 patients to maximum effect.”
Europa Uomo member organisations are being urged to provide their views on the priorities for prostate cancer as part of the consultation for the new EU cancer plan.
The European Commission launched the consultation for Europe’s Beating Cancer Plan earlier this month, “to fight cancer, to support Member States and stakeholders in improving cancer control and care to reduce the suffering caused by this disease.”
The plan will focus on prevention and early detection, treatment and care, survivorship and quality of life, and research and innovation.
Europa Uomo Chairman André Deschamps is urging Europa Uomo member organisations to give their views.
“The opportunity to contribute to a European cancer action plan does not happen every day or even every decade,” he said. “The last European action plan against cancer dates back 30 years. If we want the European Commission’s leadership to support robust early detection plans for prostate cancer and to stop the unnecessary suffering and death caused by late detection, we must act collectively now.”
He said that member organisations should not feel obliged to complete the full survey, but questions three and six, on early detection and screening were key.
The Irish prostate patients’ organisation Men Against Cancer (MAC) is running an extensive series of presentations to retired men, calling on them to advise their sons to have a PSA test if over 45 and earlier if prostate cancer runs in the family.
MAC has developed a slide presentation highlighting the new recommendations for organised screening for prostate cancer and is showing this to Probus Clubs of retired and semi-retired people.
The presentation also deals with the possible prostate cancer risks if female family members have had the BRCA breast cancer mutations. Open question-times are often followed up by one-on-one peer to peer discussions.
Europa Uomo’s prostate cancer quality of life study has caused excitement in the medical community, following the announcement of early findings at the European Association of Urology’s oncology meeting in Dublin.
At the meeting, Europa Uomo Chair André Deschamps told delegates that this is the first time that the authentic patient voice had been heard in such detail and volume, and using accredited quality of life questionnaires. The survey of nearly 3,000 men with prostate cancer found that higher than expected numbers are struggling with mental health, sexual and tiredness problems after treatment.
“There is much anticipation of the main report which we plan to have ready by the time of the EAU Congress in late March in Amsterdam,” says Europa Uomo Vice Chairman John Dowling.
Now, in recognition of the importance of this study, the EAU has offered Europa Uomo one of the headline slots at the congress, on the morning of 23rd March.
Before that date, renowned epidemiologist Professor Monique Roobol will be undertaking a scientific analysis of the data. “She says that EUPROMS is very rich in data,” says John Dowling. “The Europa Uomo Board believes that this project will be but the start of a major new development in prostate patient involvement at a high level in assessing the impacts of their disease.”
Early findings from the first prostate cancer quality of life study conducted by patients themselves show that significant numbers of men treated for the disease are struggling with mental health, sexual and tiredness problems after treatment.
The Europa Uomo Patient Reported Outcomes Study (EUPROMS) is using data from 2,943 questionnaire responses from men who have had prostate cancer from 24 European countries. The preliminary findings have been announced by Europa Uomo Chairman André Deschamps at the European Association of Urology’s oncology meeting in Dublin (pictured).
Around 45% of men reported experiencing anxiety or depression after treatment. And an analysis of survey responses using the EPIC-CP quality of life instrument indicated that lack of sexual function is having the highest impact on quality of life, with a quality of life score significantly lower that recorded in previous clinical studies. Use of, and satisfaction with, medication and devices to help erections is very low.
The survey returns also reveal that patients who have received two or more treatments have significantly lower quality of life scores.
“Our questionnaire yielded an impressive number of responses, representing a good cross-section of men of different ages and different stages of treatment,” said André Deschamps. “We have a good picture of prostate cancer survivors across Europe.”
“We conducted the study because we wanted to give patients an idea of what to expect after treatment. We also wanted to investigate the impact of diagnosis on quality of life and to raise awareness of quality of life – not just survival – as an important issue in prostate cancer.”
The announcement of these early findings precedes a full analysis of results, led by Professor Monique Roobol of the Erasmus University Medical Centre, Department of Urology, Rotterdam. A detailed analysis is expected to be presented in March at the European Association of Urology’s conference in Amsterdam.
The lack of a screening programme for the early detection of prostate cancer represents an inequality – and structured and organised PSA screening programmes should begin in all European countries.
This is a main message of a major new Europa Uomo statement, which points to the fact that prostate cancer kills more men than breast cancer kills women, and evidence that at least 20,000 men’s lives could be saved by structured PSA-based screening.
Men with prostate cancer told their stories at the launch of a new campaign to improve the care for people affected by prostate cancer across Europe.
The new Let’s Talk Prostate Cancer initiative, backed by the European Association of Urology (EAU), is bringing together an multi-stakeholder expert group across the EU to develop recommendations for the EU.
Robert Greene from the European Cancer Patient Coalition (ECPC) spoke of how his life had changed in “unimaginable ways” since being diagnosed with prostate cancer. Even though his prostate cancer was caught at an early stage, and the condition is currently manageable, Greene said he finds life full of “what ifs”.
Europa Uomo has now closed its quality of life survey, after an overwhelming response from 24 European countries. Around 3,000 of prostate cancer patients completed our questionnaire, which explored experiences of treatment and life afterwards.
The number of respondents is three times Europa Uomo’s original target for a minimum response. This means that the findings, when published, will hold even greater weight – highlighting the factors that matter most to men and how their lives might be improved.
The cookie settings on this website are set to "allow cookies" to give you the best browsing experience possible. If you continue to use this website without changing your cookie settings or you click "Accept" below then you are consenting to this.