Men with penile cancer want future studies on their condition to explore quality of life up to and beyond treatment, allowing them to receive better support, according to UK researchers.
Men taking part in a small study reported experiencing lack of engagement, avoidance and delay in help-seeking after noticing a lump or wart on their penis.
“The experiences of men with penile cancer are complex”
Participant also described the fear they felt after their diagnosis, especially regarding their sex lives and urological dysfunction, said the researchers.
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, they said.
Meanwhile, the ability to maintain a sex life was described as “the most obvious” day-to-day issue for men with penile cancer.
The findings were based on 10 men with experience of the diagnosis and treatment of penile cancer, who took part in the study by Leeds Beckett University, 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.
The aim of the study, published in the 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.
Men with penile cancer want more support, finds study
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.
Three main themes emerged from the groups – early signs and seeking help, disclosure of a “personal” cancer, and urological dysfunction.
Lead study author Dr Peter Branney, senior lecturer in social psychology, said: “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,” he said.
Dr Branney added: “What our study shows is that future research should explore quality of life up to and beyond treatment.”