Bladder cancer can be seen as a chronic condition—patients with nonmetastatic disease can live years, even decades, after diagnosis, and they often die of unrelated causes.1 This chronicity intensifies the impacts of initial management: Clinical decisions made in the first weeks or months of the patient’s journey exert a domino effect that spans the entire disease trajectory. Early detection and appropriate initial management significantly improve patient outcomes and quality of life, while delayed detection and excessive or inappropriate treatment lead to needless suffering and financial toxicity.
Capturing patient voices and patient-reported outcomes (PROs) is crucial to identify gaps and challenges and design actionable strategies for care improvement. In bladder cancer, such data historically were sparse, but that changed this year with the publication of findings from a unique, first-in-kind Global Bladder Cancer Patient & Carer Survey.2 Developed by the World Bladder Cancer Patient Coalition and a panel of expert advisors, this 65-question survey captured the views and experiences of 1198 patients with bladder cancer and their carers in 45 countries. The survey was administered in 11 languages and assessed disease awareness, care pathways, treatment, quality of life, clinical trials, management costs, survivorship, and the carer role. Its findings can deepen our understanding of current patient and carer needs and priorities and provide a benchmark for healthcare systems around the world to prioritize goals to improve care delivery.
The survey identified ten priorities for action. I would like to highlight the need to improve primary care provider (PCP) and public awareness of bladder cancer risk factors. PCPs are usually the initial point of healthcare system contact for patients with de novo bladder cancer, so timely diagnosis hinges on PCP knowledge and vigilance. Because hematuria is the most common symptom of bladder cancer, gross hematuria or even persistent microhematuria should trigger PCPs to consider and evaluate for a genitourinary malignancy. Unfortunately, most patients with hematuria are not referred and evaluated even when they have documented risk factors for bladder cancer such as smoking or older age.3 Particularly in women, hematuria is frequently attributed to other causes (cystitis, urinary tract infections, menstruation) without further investigations. Such oversights inevitably delay diagnosis and treatment. In one large study of commercial US health insurance claims, mean time from the initial hematuria claim to the initial linked bladder cancer claim was 74 days in men and 85 days in women.4 Delays in bladder cancer diagnosis have been associated with greater risk of death independent of grade or stage.5 In a study of patients with MIBC, surgical delays exceeding 90 days were linked to significantly lower survival.6 In the Global Bladder Cancer Patient & Carer Survey, 57% of patients with bladder cancer were initially misdiagnosed, and more than half did not know the signs and symptoms of bladder cancer prior to their diagnosis.7 To help fill this gap, educational platforms directed to PCPs and patients should communicate bladder cancer signs, symptoms, and best practices for diagnosis in clear, actionable language.
A relevant resource is Project ECHO (Extension for Community Healthcare), a web-based video conferencing platform whose hub-and-spoke model links specialists with community providers for telementoring, case-based discussions, and training on evidence-based practices. Established in 2003 by the University of New Mexico to improve access to specialty care in rural and medically underserved communities, Project ECHO now has US federal and private funding and more than 400 hubs worldwide.8 Its expansion is exciting for the bladder cancer community because delays in diagnosis are a global problem. I welcome those interested in participating in this effort to contact me at .
In addition to the gaps in awareness identified by the global survey, it is incumbent on us to further reduce the burden of suffering as well as financial toxicity for our patients with bladder cancer by educating urologists and oncologists to de-escalate treatment whenever possible and appropriate. Bladder cancer remains the costliest cancer to treat, in part because of its chronicity but also because surveillance requires invasive procedures (cystoscopy, biopsy, imaging, etc.). In the Global Patient and Carer Experience survey, 10% of respondents were severely financially impacted by living with bladder cancer.2 While active surveillance has gained mainstream recognition in prostate and renal cancer, it is still not commonly accepted for low-grade bladder cancers. Urologists should learn to accommodate the principle that patients with lower-risk bladder cancer often fare better under active surveillance than if they are rushed to surgery. Similarly, rather than subjecting patients with lower-risk bladder cancer to repeated cystoscopies every few months, we can wait longer between cystoscopies, since the risk from this paradigm is minimal.9,10
This principle also applies to more advanced bladder cancers – namely, that overtreating bladder cancer does not improve outcomes and, indeed, can cause physical harm in addition to financial toxicity. At ASCO 2023, Dr. Seth Lerner presented results from the phase 3 SWOG S1011 study of patients with MIBC undergoing radical cystectomy, in which extended lymphadenectomy (ELN) was tied to significantly worse morbidity and perioperative mortality and produced no benefit in oncologic outcomes as compared with standard lymphadenectomy.11 As urologists, we need to adopt the mindset that more is not always better.
A related take-home message is that for patients with bladder cancer, quality of care matters far more than quantity of care. As I have stated repeatedly,12,13 we particularly need to improve the quality of initial transurethral resection of bladder tumor (TURBT), especially when it comes to completeness of resection and quality of the histopathologic specimen obtained, since the pathologist relies on this specimen to make the crucial diagnosis. Indeed, the quality of the initial TURBT specimen is fundamental to all subsequent care decisions and thus profoundly impacts long-term patient outcomes. Adequate sampling and proper specimen handling are essential for tumor identification and staging, margin (depth) evaluation and prognostication, and decisions about adjunctive treatment and surveillance. When initial specimen collection and resection are not of sufficient quality, everything subsequent to this can cause suffering for our patients. Without a good specimen, we cannot achieve an accurate diagnosis. If we do not perform a complete initial resection, subsequent intravesical therapy will be less effective.
These “domino effects” may seem obvious, but initial TURBT is often relegated to junior residents or other clinicians who frequently lack the training and experience to maximize specimen TURBT quality and resection completeness. We are seeing considerable focus and funding to develop the “latest and greatest” in bladder cancer – i.e., novel robotic surgery techniques, new genotyping methods, etc. – even as many patients continue to receive low-quality initial TURBTs. Studies show that more experienced surgeons are more likely to meet quality indicators, such as the presence of detrusor muscle in the resection specimen.14-16 Hence, I wish to make a plea to all urology training programs: Please comprehensively cover TURBT specimen quality and strategies for performing complete resections.
Intriguingly, we are seeing increased focus on harnessing artificial intelligence (AI) to improve surgical outcomes for patients with bladder cancer.17,18 American Urological Association (AUA), European Association of Urology (EAU), and International Bladder Cancer Group (IBCG) guidelines19-23 recommend calibrating resection depth based on tumor grade, but grade is determined by histopathology, so we cannot definitively know grade prior to surgery. Consequently, urologists may either resect too deeply (risking perforation of the bladder) or may not go deep enough (risking leaving tumor behind and collecting an inadequate specimen for evaluation). To address this challenge, researchers are developing AI tools that will enable urologists to review images of specimens, predict grade, and receive feedback on accuracy in real time. Such tools are investigational and not ready for prime time, but they ultimately may help surgeons identify and correct individual tendencies to grade certain tumors inaccurately based on tumor appearance. The recent surge of interest in AI (e.g., ChatGPT) has helped urology AI-assisted grading tools receive the attention of industry. I encourage companies to review and consider investigating in this technology, which, like Project ECHO, may someday help a wide range of urologists improve their surgical practice, particularly if they have limited access to experts for training purposes.
In summary, we can best care for our patients with bladder cancer by heeding their voices and preferences, prioritizing their quality of life, emphasizing care quality over quantity, avoiding overtreatment whenever possible, and supporting the advancement of public knowledge and vigilance. I am excited and encouraged by new technologies and collaborations that can link community practitioners around the world with expert mentoring and case consultation. Urology training programs should help trainees achieve key quality metrics in TURBT, such as specimen quality and completeness of resection, since these affect all subsequent aspects of survivorship.
Written by: Ashish M. Kamat, MD, MBBS, Professor of Urology and Cancer Research and Wayne B. Duddleston Professor of Cancer Research at MD Anderson Cancer Center in Houston, Texas. Dr. Kamat serves as President of International Bladder Cancer Group, (IBCG), and Co-President of International Bladder Cancer Network.
Related Content: Bladder Cancer's Impact on Daily Life and Employment: A Global Perspective - Lydia Makaroff & Lori Funk-Cirefice
The Global Bladder Cancer Survey: A Strategic Analysis of Diagnosis and Care - Stephanie Demkiw & Lydia Makaroff
Global Insights into Bladder Cancer Care: A Comprehensive Survey by the World Bladder Cancer Patient Coalition - Patrick Hensley & Lydia Makaroff
Published Date: July 2023
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