The last year has passed incredibly quickly. It is already a year since I was elected as chairman of Europa Uomo during the General Assembly in Dublin.
Together with the Board and our members, we have worked hard to grow further the organisation and fulfil our mission of being the voice of men with prostate cancer in Europe.
We have increased our communication efforts through our newsletter and our website. It is possible to read our website in many languages and our newsletter attracts more and more readers. But there is still a lot of work to do.
with all our members we undertook a survey and the results show that the
knowledge of prostate cancer in most European states is no higher than 50% and
there is a big inequality in cancer care.
Here are some figures:
- Less than 50% of all men are aware of the disease
- PSA-led early detection is promoted by healthcare professionals in only 50% of the countries
- Depending on the country, between 20 and 60% of all PCa diagnosis is done in the metastatic phase
- A multidisciplinary approach is partially available, not all treatments are available in all countries. Inequality of care is the norm
There is also good news. The EAU has finally decided on major change following the long-running debate on PSA-led screening for prostate cancer. In the new guidelines (2019) screening is now recommended as the new standard. The last year’s data has shown that, providing the screening is done in accordance with the new EAU guidelines, the results of screening (in terms of lives saved) are as good, if not better, than screening for colon or breast cancer. This is without even taking into account the benefits, in terms of the quality of life of prostate cancer patients, that early diagnosis brings.
Unfortunately, men cannot influence whether, they develop PCa, nor whether it will be a slowly developing low risk, or a highly aggressive cancer. What men (and policy makers) can influence is an early detection of this cancer.
If you are diagnosed at an early stage, your quality of life is affected, but to a much lesser extent than detection in a metastatic phase. This is specially true when treatment is carried out in a cancer centre with experienced surgeons, radiotherapists and medical oncologists. Detection in advanced or metastatic phase means a lifetime of hormone treatment which often has the following side effects: impotence, fatigue, osteoporosis, loss of libido and in a later treatment phase, chemotherapy.
In order to ensured that men receive the best possible treatment, and that over treatment is no longer an issue, when screening is adopted, we as patients must urge our politicians and policy makers to adopt a change in strategy based on three pillars. All three must be implemented at the same time to ensure the best treatment, with quality of life, and reduced overall cost. These pillars are:
- Increase awareness of the disease
- Promote informed PSA-led early detection
- Ensure treatment of PCa in multidisciplinary cancer centres
It will be necessary to launch awareness campaigns as was done for breast and colon cancers. Men and their relatives need to be made aware that PCa exists and that curative treatment is possible, especially when detected at an early stage.
Promote informed PSA led early detection
It is important that informed men are actively encouraged by their government and healthcare professionals to test their PSA level. The scientifically based advice on when to test is described in the newly published EAU guidelines. They insist on an individual early diagnosis in informed healthy men with a life expectancy of 10 to 15 years. If there is a suspicion of PCa based on the PSA test a mpMRI scan should be performed before deciding on a biopsy. Diagnosis starts at 45 to 50 years depending on risk analysis and family history. Depending on life expectancy, 70 years should not always be the end date of PSA-led early detection.
Ensure treatment in multidisciplinary cancer centres
Considering the best outcome for men, treatment in a cancer centre with a multidisciplinary approach is a must. Studies have shown that the extent and severity of the side effects of treatments are a function of the experience of the surgeon and/or radiotherapist.
We expect cancer centres to measure the patient-related outcomes and have them published and freely accessible for patients.
Different initiatives have been taken to establish prostate cancer centres. Germany for instance, has developed its own requirements. From a patient point of view, as long as the general idea is maintained and all treatments are ensured, we can live with these developments.
The development of active surveillance treatment for men with low-risk PCa is essential in order to avoid over-treatment and to ensure an optimal quality of life for the patient for as long as he can stay in that programme. It is also important to realise that active surveillance is a treatment in itself, and, should be considered as valid as any other treatment in Stage I and Stage II of the disease. Active surveillance should not be confused with the watchful waiting programmes in the later stages of the cancer.
In the last three years, a lot of progress has been made and knowledge gathered on how to apply active surveillance safely. Generally, there is a belief that this treatment can be valid for up to 30% of patients – those with low or intermediate risk.
It is up to Europa Uomo and its members to insist that screening is implemented as described above.
As you will read in this report, our projects are still the driver of our actions. You will discover that we have rearranged and adapted some projects and added some new ones. This is a result of our experience in working with projects over the last three years and a sign of our continuous improvement. We also try to link expenditure as much as possible to our projects. As such, we continue to improve our efficiency and assign our limited resources (money and human resources) where they are likely to have the most effect.
I would like to say thanks to all who have contributed to our efforts this year. Not in any specific order: our members, volunteers, our secretariat, sponsors, scientific advisors, healthcare professionals, Board members, LOCs and all those members of committees and meetings who have listened to our concerns and have allowed us to share our views.
Finally, a special thanks to Tackle UK for hosting our general assembly this year.