By Melanie Costin
The European Association of Urology (EAU) Congress held in Paris was an enlightening experience. As a bladder cancer patient advocate, it was heartening to witness firsthand the leaps in research, treatments, and patient support showcased throughout the event.
Fight Bladder Cancer was represented at this event by Andrew Dearden (Chair of the Trustees), Alison Birtle (Trustee and Medical Advisor), Param Mariappan (Medical Advisor), Lydia Makaroff (Chief Executive), and me – Melanie Costin (Director of Patient Engagement & Support).
The session chaired by Ashish Kamat from Houston and Arnulf Stenzl from Tübingen, titled “Common Problems and Controversies in Bladder Cancer,” was a platform for spirited debates and knowledge exchange at the European Association of Urology Congress. The session kicked off with an introduction by Ashish Kamat, setting the stage for a series of rapid-fire debates that delved into pressing questions surrounding bladder cancer surveillance, treatment options, and management strategies for recurrent and muscle-invasive bladder cancer (MIBC). One debate explored the role of urinary markers versus cytology in the modern era of cystoscopy for patient surveillance, igniting a discussion on potentially reducing cystoscopy frequency. Another critical debate addressed the challenging scenario of managing patients with frequent recurrence of low-grade papillary tumours despite intravesical chemotherapy and BCG therapy, probing the merits of repeated TURBT versus surveillance.
Personalised medicine was a recurring theme. The emphasis on avoiding overtreatment, avoiding undertreatment, and using more diagnostic tests to make better decisions is crucial. Prof Alison Birtle, Trustee of Fight Bladder Cancer, spoke at a session on the treatment for young, healthy people with muscle-invasive bladder cancer highlighting the need for more patient choice and informed decisions, a call to action that resonates deeply with me and many others.
The Patient Organisation Nutrition Roundtable, with contributions from professionals like Maarten Soeters, Bente Thoft Jensen, and dieticians such as Sandra Beijer, alongside advocate Perry Huesman, highlighted the need to integrate dietary considerations into patient care plans, showing the relationship between nutrition, health equity, and patient outcomes. In a presentation led by Robert Greene on nutrition in cancer care, the focus was on including foods such as grains, pulses, and vegetables in patients’ diets, which sparked discussion among attendees about the affordability of these diets within Europe and whether patients, regardless of economic status, could maintain such diets to aid recovery and pre-habilitation. Based on my experience supporting patients after radical cystectomy, I noted that beyond the cost, many individuals come home from surgery too unwell to prepare or purchase meals and, without a support network, struggle to adhere to a diet critical for recovery. This underlines the necessity for a holistic approach to support post-surgery, with options such as meal services for cancer patients as practical early recovery solutions.
Dr Lydia Makaroff, Chief Executive of Fight Bladder Cancer, was part of a roundtable titled “Patient Organisation Roundtable on AI: Use of Digital Technology & Data-Driven Shared Decision-Making.” Moderated by Eamonn Rogers, the session began with an introduction to the transformative potential of digital technologies and artificial intelligence in healthcare, particularly in enhancing patient advocacy and decision-making processes. Lydia delved into how AI and digital platforms revolutionise patient advocacy by fostering informed shared decision-making between patients and healthcare providers and by providing personalised patient education. The roundtable further explored strategies for disseminating health information, as discussed by Jenny Ghith and Lynne van Poelgeest’s insights on leveraging digital platforms for international patient advocacy.
Witnessing Susan Mullerworth, patient advocate for Fight Bladder Cancer, speak at the European Association of Urology Nurses Congress on “The Impact of Cystectomy on Quality of Life and How To Improve This” was enlightening for the audience. Susan, a fellow bladder cancer survivor, shared her personal journey and the significant challenges she faced following her cystectomy. Her candidness in discussing the physical and emotional adjustments post-surgery and her resilience in navigating these changes was deeply inspiring. She emphasised the critical need for comprehensive post-operative support and highlighted strategies to enhance the quality of life for patients undergoing cystectomy.
The “Urge to Act” workshop, held during the EAU24 Congress, marked a pivotal moment for the continence care community. Philip Van Kerrebroeck, Vice Chair of the EAU Policy Office, opened the session with an update on the campaign’s progress, setting a collaborative tone. Tomasz Michaelek provided a patient perspective, linking the campaign with the broader Commitment to Collaboration in Continence Care (4Cs) initiative and underscoring the critical role of patient voices in shaping healthcare policies. The session concluded with a forward-looking discussion on the next steps, solidifying the commitment among participants to drive change in continence care at a national and international level.
At the heart of the European Association of Urology Congress, the World Bladder Cancer Patient Coalition booth stood out as a hub of engagement and solidarity. Highlighting the upcoming Bladder Cancer Awareness Month in May, the booth offered visitors the #BladderCancerMonth24 toolkit, designed to empower advocates and patients with resources to amplify their voices. A particularly popular feature was the selfie frame, inviting attendees to capture and share their support for bladder cancer awareness on social media. Seeing people like Prof Mariappan (medical advisor for Fight Bladder Cancer) and Prof Birtle come together, showcasing their commitment to raising awareness and supporting bladder cancer patients worldwide, was inspiring.
The wealth of knowledge and diverse perspectives I gathered from EAU24 will significantly enhance my role at Fight Bladder Cancer, especially in directing patient engagement and support. The spirited debates and insights into established and emerging treatment modalities have equipped me with a broader understanding of the current landscape in bladder cancer care. EAU24 has provided me with invaluable resources and inspiration to refine our patient engagement and support programs, ensuring they are comprehensive and deeply attuned to the evolving needs of the bladder cancer community.