Men tell their stories

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”.

What if his recent MRI scan reveals progression of the disease? What if he suddenly suffers from sexual dysfunction or loss of libido? What if he becomes incontinent?

These sorts of questions are rarely openly discussed in EU policy forums. So a number of experts on prostate cancer are now joining together to create a platform, where people can talk openly about prostate cancer – particularly advanced prostate cancer – and form them into recommendations. The campaign is being led by Tiemo Wölken, a member of the European Parliament.

Talking part in the launch was Professor Hein Van Poppel, Adjunct Secretary General of the EAU and ex-officio board member of Europa Uomo. He stressed the need screening programmes based on PSA testing. The EAU has gold standard clinical guidelines on PSA testing agreed by all 28 EU member states, but there is evidence that PSA is being tested less, and diagnosis at an advanced stage is becoming the norm.

Professor Van Poppel warned that, unless testing increases, more and more patients will need to be treated for advanced an metastatic disease in years to come.