Penile cancer research should explore quality of life up to and beyond treatment, new study shows
The aim of the study, led by Dr Peter Branney, Senior Lecturer in Social Psychology at Leeds Beckett, and published in the latest edition of International Journal of Urological Nursing, was to identify the quality-of-life aspects of diagnosis and treatment that men with penile cancer thought most affected them, and therefore which they would want to be explored in further research.
Dr Branney explained: “Penile cancer is rare and so it is difficult to include men with penile cancer in research about their condition. Equally, the experiences of men with penile cancer are complex and require in-depth exploration if we are to develop treatment, rehabilitation and support that meets patients' needs.
“The standard treatment for penile cancer is surgical excision of the primary tumour, which means that sexual and urinary functioning can be impaired. There is evidence of reduced quality of life in up to 40% of patients; whilst one clinic has found signs of psychiatric morbidity and post-traumatic stress in almost half of a sample of patients. Survival for penile cancer is high but treatment can have a long-term detrimental effect on urological function and quality of life.”
Ten men with experience of the diagnosis and treatment of penile cancer took part in the study, which took the form of a one-day workshop. Two groups of five participants worked with an experienced researcher to design a one-on-one semi-structured interview which was then piloted by the participants themselves. The focus groups began with time for participants to get to know each other and build rapport, before creating and carrying out their interviews together.
Dr Branney said: “Participants spoke of feeling a helpless inevitability about what was to come, fearing the loss of their penis and conscious of their mortality. When the point of diagnosis was reached this led to an eruption of fear and a shift in temporal perspective, from the long- to the short-term, as they faced their mortality. Early physical signs and, particularly, the moment of ‘diagnosis’, led to a process of problem-focused and systematic information seeking: an attempt to regain control when faced with their mortality.”
Most participants in the study were over 55 years old. Of the 10 men, seven lived with their wife or partner and the remaining three were widowed or single. Six participants reported that their primary treatment was a glansectomy. One had a glans resurfacing, one had had a total penectomy and one had undergone radiotherapy as his primary treatment.
In devising their interviews, one group began by ensuring their participant was comfortable, clarifying how he would like to refer to the penis in order to dispel discomfort about referring to urological functioning. The second group referred to this as ‘waterworks’. Three main themes emerged from the groups: early signs and seeking help, disclosure of a ‘personal’ cancer, and urological (dys)function.
When discussing the early signs, the men reported experiencing lack of engagement, avoidance and delay in help-seeking after noticing a lump or wart on their penis. For several men, being male was used to explain this and they tended to concede control of their initial diagnostic stage to others, in particular female companions.
The penis and the tumour was seen as personal by the men, who talked about their embarrassment should others learn of their cancer and associated treatment. They aimed to limit disclosure to family; however there were practical limits to non-disclosure, such as their avoidance of urinals in public toilets or overnight hospital appointments when colleagues, neighbours, etc. might notice their absence. Saying that their cancer was ‘down there’ was a way of providing a vague location whilst closing off further discussion.
The final theme of urological (dys)function described the fear that participants felt after their diagnosis. Wearing a catheter was considered worse than the operation to excise the tumour and removal of the post-surgical catheter was talked about as if it were a rite of passage. Whilst the ability to maintain a sex life was described as ‘the most obvious’ day-to-day issue for men with penile cancer, participants noted that it would be difficult to discuss sex in interviews.
Dr Branney explained: “That urological (dys)functioning should be a theme is unsurprising and is the primary concern of the quality-of-life research on penile cancer. The sample may have under-represented those for whom treatment has devastating effects on sexual function. Alternatively, the group format may have discouraged participants from discussing sexual intimacy and intercourse and one-on-one interviews may prove more fruitful for this topic.
“What our study shows is that future research should explore quality of life up to and beyond treatment. This could be done by interviewing a sub-sample of participants in each treatment arm of a trial, using patients' stories to complement the quality of life and survival outcomes. The chronological story told by our participants, from diagnosis, to telling others, to life post-operation, supports existing patient-focused models of care. Throughout the cancer journey, a patient-focused approach could explore the impact of diagnosis and treatment, with specific aspects of their experiences being tackled at appropriate times along the care pathway, and how, through disclosure, patients can seek emotional and practical support from others.”
The research builds on Dr Branney’s Patients’ Experiences of Penile Cancer study, which began with a collection of video interviews with men across the UK discussing their experiences of diagnosis and treatment.