Understanding the disparities between a surgeon and patient experience is valuable for both. And what patient is better placed to describe their prostate cancer journey than Stephen Fry?
One of the most valuable skills of the clinician is one that cannot easily be learned — empathy. However, understanding the patient experience can be difficult. As urologists considering the prostate cancer ‘journey’, our first thoughts will most likely go towards the pragmatics of the situation: PSA testing, biopsy, treatment decisions and so forth; whereas the patient’s experience of these same steps is likely to be considerably different. The experience of every patient is unique and rarely discussed in the scientific literature in their own words. Comparison of the patient’s and the clinician’s view of the same shared experience is almost unheard of, but such understanding could be extremely valuable to both parties.
Thus, Nature Reviews Urology is extremely proud to present a Viewpoint article that does just that, written by writer, broadcaster and actor Stephen Fry and the surgeon who treated him, Ben Challacombe1.
In February 2018, Stephen announced, via a video shared on his Twitter account, that he had been treated for prostate cancer2. Since then, the ‘Stephen Fry effect’3 has reportedly led to increased numbers of men seeking medical advice regarding prostate health and an additional £10 million investment into prostate cancer services in the UK to help manage this increased demand1. With an estimated 164,690 new prostate cancer cases diagnosed in the USA in 2018, and 29,430 prostate cancer-associated deaths4, millions of men worldwide have experienced, or will experience, this life-changing diagnosis.
Few patients are in a better position to describe their prostate cancer experience than Stephen. As a prolific writer and speaker, he is accomplished in communicating with people and used to life in the public eye. However, even taking this into consideration, he has offered an exceptional insight into his life, including sharing his imaging studies and pathology slides, and has described his experiences with honesty and humour. Alongside Stephen’s account, Ben presents his own recollections, offering a rarely described glimpse of the surgeon’s insight, as well as his own thoughts and feelings about managing such a high-profile patient. Their article reminds us as clinicians that every patient has their own story to tell, regardless of their background or our preconceptions; as patients, it reminds us that our doctors are only human.
Prostate cancer care has undergone a revolution in recent years, with a move away from surgical and medical therapy and towards the use of active surveillance protocols to reduce the burden of treatment on health-care services and to improve the patient experience of a disease that, in many cases, does not require therapy5. Alongside this move towards improved quality of life for patients, prostate cancer clinical trials have become increasingly aware of the importance of quality-of-life outcomes and the need for patient-reported outcome measures (PROMs), reflecting a deeper understanding of the importance of patients’ accounts6. However, changes in recommendations for prostate cancer screening protocols, particularly in the USA, are leading to an increase in the number of men diagnosed with clinically significant cancer, possibly resulting in many more men requiring surgery and having to make the difficult decisions faced by Stephen regarding treatment options7.
We hope that this Viewpoint will fill an important gap in the literature and that it can be useful for clinicians and their patients. As part of a drive towards shared decision-making, understanding our patients concerns and feelings is essential for the urologist and has considerable value for managing patients’ expectations. Likewise, a resource for men in a similar position to Stephen has the potential to help them understand their own feelings, reflect on their own experiences and feel that they are not alone. As such, we have taken the step of making the article free to access in perpetuity.
In the future, the protocols, tools and treatment modalities associated with prostate cancer care are sure to change. However, human emotions are subject to far less speedy evolution, making this ground-breaking article a valuable resource for surgeons and their patients for — we hope — years to come.