Renal and rare cancers: “Preserving the cure while minimising harm”
At the Plenary Session on renal and rare cancers on the final day of EAU26 in London, much attention was given to the latest diagnostic and treatment options, be it through case discussions or state-of-the-art presentations on the latest discoveries around kidney tumour subtypes.
Notably, the session also featured a block of talks about the quality of life of patients, their needs and the importance of hearing their voice as part of the treatment process. Penile cancer patient Mr. John Osborne (GB) spoke about the progress with the survey he has set up for other penile cancer patients, to get a better idea of their experience and how they could receive better (post-operation) support. Mr. Osborne is also a patient advocate member of the EAU Penile Cancer Guidelines Panel, and lead patient advocate for eUROGEN.
Mr. Osborne described some of his own struggles since his diagnosis in 2016 and initial misdiagnosis and introduced his survey: “Initial results have revealed that penile cancer patients struggle hugely with quality-of-life issues, profound physical and emotional changes. Feelings of mutilation, loss of masculinity can all lead to relationship breakdowns or even withdrawal from society.”
“With reports of self-harm among patients (25% of respondents contemplated harming their own life), we know that clinical intervention is just the beginning. Psychological support after treatment is not optional for these patients.”
Mr. Osborne ended on a final plea to the urologists in the room: “Don’t fix us if you leave us broken.”
Background
At a later point, Session Co-Chair Prof. Maarten Albersen (BE) explained that penile cancer patients often require a unique approach, often due to the large psychological burden placed on patients after their surgery:
“The penis is of course a symbol of masculinity, it’s central in sexuality, so having an operation on it, or a partial amputation is very impactful, in terms of self-image, masculinity, and sexual function. That, combined with its relative rarity -which makes it hard to conduct research or get large groups of patients together to fill in questionnaires like this- makes what John has accomplished truly unique.”
“He’s not tied to a specific institution, he’s not a doctor, so when he asks patients from one patient to another, it’s much more inviting. For individual centres it’s hard to achieve this so it’s great that the EAU Patient Office can facilitate this.”
Avoiding chemotherapy
On the subject of “leaving patients broken”, the Plenary Session also featured a talk by Dr. Anna Thor (SE) on de-escalation in stage II seminoma testicular cancer.
While patients might react well to chemotherapy and radiotherapy initially, these are often young patients and 20 years down the line mortality increases. Dr. Thor: “This is due to the ‘better safe than sorry approach’ that is being recommended by doctors or requested by patients. This can lead to difficult conversations, especially as patients focus on short-term survival. Clinicians can’t afford to approach the problem like this.”
Three strategies are emerging at reducing the burden of treatment: chemotherapy de-escalation, combined radio-chemotherapy strategies (both lower doses), or even surgery as a first-line therapy.
“Surgical treatment has reemerged on certain patients,” Dr. Thor explained. “The first studies show remarkably consistent results. There is a 10-30% relapse rate, but this is caught early and patients are usually highly sensitive to subsequent chemo or radiation treatment. Surgical morbidity is low. The most important finding is that some patients can avoid further treatment altogether. The price of avoiding chemo is a higher relapse rate, but not at a loss of a cure.”