Penile squamous cell carcinoma has an annual incidence of one case per 100,000. Three quarters of cases are curable, but in 25 per cent the condition can become incurable. Before 2002, patients were managed in local centres where a consultant urological surgeon might see one case per year and aggressive resection of the penis or complete amputation was usually recommended. 

In terms of disease management patients were offered either radical groin lymph node dissection or surveillance until a recurrence was detected. They tended to suffer significant pyschosexual issues, functional voiding problems and further lower limb morbidities such as lymphoedema. With so few patients, there was little opportunity to evaluate new treatments. 

The service was new to St George’s in 2002, so the team could set standards and goals from the outset. They designed the seven key objectives around which the service remains based. Among these, they agreed to offer new surgical techniques in penile preserving surgery without compromising local recurrence rates, and to develop new staging techniques for detecting inguinal node metastasis. 

A clinical infrastructure was set up. Weekly clinics, theatre lists and MDT meetings were available. Patients were seen within five working days of referral, and discussed the same week. A comprehensive database of all patients was designed for both clinical audit and research. 

A specialist nurse worked with the surgical team to understand the patient experience. Patient information booklets were updated to include newer treatment options. 

The initial benchmark for turning round letters to clinicians and patients was seven working days, with the team now aiming for 48 hours with outsourcing of dictation.  A supra-regional network of cancer centres was set up, and follow-up regimes tailored to patient needs. 

Penile preserving surgical techniques have shown no deterioration in local recurrence. The techniques are being adopted more widely in the UK. The team routinely uses Sentinel Inguinal Node biopsy, and has established an audit database to monitor standards across the UK. 

In recent patient surveys the service was rated ‘very good’ or ‘excellent’ by over 90% of respondents. 

A network of supporting cancer centres work to agreed standardised protocols for delivery of radiotherapy and chemotherapy. The team worked on the only prospective penile cancer trial in the UK to date. 

The team learnt a number of important lessons. They found that communication has to be timely, relevant and patient-focused at all times, and that the patient must remain at the centre of care. 

They also learnt the importance of evaluating work as part of a constant interative process, both subjectively and objectively, and never to stand still. The importance of data also became clear, as did the importance of having the support of your organisation. They also found that it is important to educate others without destabilising the service.

The management of patients with penile cancer has been transformed through innovation, close team working, expertise of a rare condition, collaboration with other centres of excellence and a commitment to education and dissemination of knowledge. 

The service was measured in a number of ways. It was looked at subjectively through patient/referrer satisfaction and quality of life tools. Objective measurements were taken by looking at data on cancer specific survival, sensitivity of diagnostic and staging tools, frequency of presentations and publications, and recruitment to clinical trials.