1. INTRODUCTION
1.1. Aim and objectives
The European Association of Urology (EAU) - American Society of Clinical Oncology (ASCO) Guidelines on Penile Cancer provide up-to-date information on the diagnosis and management of penile squamous cell carcinoma (SCC).
It must be emphasised that clinical guidelines present the best level of evidence available to the experts but following guideline recommendations will not necessarily result in the best treatment-related outcomes for a given patient. Guidelines can never replace clinical expertise when making treatment decisions for individual patients, but rather help to focus decisions. Taking patient’s personal values and preferences/individual circumstances into account is of paramount importance. Guidelines are not mandates and do not purport to be a legal standard of care.
1.2. Panel composition
The EAU-ASCO Penile Cancer Guidelines Panel consists of an international multi-disciplinary group of clinicians, including urologists, pathologists, oncologists, radiation oncologists, and patient advocates. The members of this Panel have been selected based on their expertise and to represent the multi-disciplinary professionals caring for patients suspected of having penile cancer. All experts involved in the production of this document have submitted potential conflict of interest statements, which can be viewed on the EAU website Uroweb: https://uroweb.org/guidelines/penile-cancer/panel.
1.3. Available publications
A quick reference document (Pocket guidelines) is available. This is an abridged version which may require consultation together with the full text version. This 2023 updated document presents a complete revision of the prior (2018) publication. All prior versions can be viewed at the EAU website: https://uroweb.org/guidelines/archive/penile-cancer.
1.4. Publication history
The EAU Penile Cancer Guidelines were first published in 2000; the current 2023 EAU-ASCO publication presents a complete revision of the prior print.
1.5. Preface
Penile cancer has a significant impact on quality of life (QoL) in many ways. Patients not only suffer the psychological and emotional stress of a cancer diagnosis and what that means for the rest of their lives, but also the psychological impact and stigma of cancer on an intimate part of the body. The treatments also cause significant physical and emotional changes, resulting in feelings of mutilation, loss of masculinity and coping with the impact on voiding and sexual function, which in turn can result in relationship breakdowns and withdrawal from society. Long-term managing lymphoedema also presents a challenge for many of these men.
As a Guideline Panel, we have chosen to stress the importance of QoL in penile cancer at the beginning of our guidelines, we feel strongly that these significant emotional, social, and physical needs are discussed and addressed early in the patient pathway, through a holistic and multi-disciplinary approach. An important part of a holistic approach is access to palliative care. The World Health Organization (WHO) definition of palliative care states it “is a crucial part of integrated, people-centered health services. Relieving serious health-related suffering, be it physical, psychological, social, or spiritual, is a global ethical responsibility” [1]. As a result, access to palliative care should be available to patients throughout their cancer pathway.
It is important to recognise the evolving needs of a patient with a diagnosis of penile cancer, even many months following the completion of treatment, and therefore appropriate follow-up and patient support services are also a critical aspect of penile cancer care.
Reality is that much of the literature on this rare cancer over the last two decades has focused on oncological outcomes rather than functional- and QoL outcomes. So much more needs to be done to investigate these issues and address the many unmet needs of patients diagnosed with penile cancer, some of which are described in Table 1.1 [2].
Table 1.1: Unmet needs of penile cancer patients
Emotional needs | Relationship needs | Medical needs |
Loss of masculinity | Impact on relationship with partner | Lack of advice on how to cope |
Shock/disbelief | Sexual | Lymphoedema |
Depression/sadness | Performance anxiety/cannot satisfy partner | Lack of information on what to expect after surgery |
Fear | Concerns on how to tell family | Sit down to urinate/cleanliness of toilets |
Anxiety | Relationships damaged or lost | Lack of rehabilitation/supportive care |
Embarrassment/stigma | Avoiding meeting friends/new relationships | Missed/incorrect diagnosis |