The patient's perspective: Life with penile cancer

“I wish I had known penile cancer even existed” Patrick Howard and his wife Laura sit on their orange couch in front of a wallpaper with lush ferns and orange birds of paradise. Patrick is familiar with urological cancers; he had previously been diagnosed with prostate cancer and a tumour on his kidney. Yet when he heard his penile cancer diagnosis, the possibility had never even crossed his mind.

Caring for caregivers
Patrick is not facing cancer alone. His wife Laura supports him every step of the way, acting as, in his words, “an absolute rock of support.” Many patients do not want or are unable to learn about their conditions; when facing serious diagnoses patients forget up to 80% of what they are told. [1]

For Patrick and many patients like him, his spouse shares in the burden of cancer. Laura adopted the mantel of emotional support, as well as the daunting task of processing the library of information that they were given. She strove to become an expert in Patrick’s condition. Laura familiarised herself with the different treatments and possible outcomes, and would ask questions of the medical staff. But supporting someone in such a way can exact a toll on a partner.

A life in limbo
Not expected to survive more than 12 months was written on Patrick’s letter from the consultant. It was not the first time he had received a similar prognosis since he was diagnosed in 2020. Successful treatments have given him time, time that he and Laura are grateful for, but time they feel they are heading into blind. They describe the relationships they have with the medical team as “project based,” wherein where their interactions are limited to treatments rather than Patrick’s journey as a patient. As treatments go well, new options become available and the prognosis is extended. But as a patient, Patrick was never offered glimpses of a longer term plan – only the treatment in front of him.

Living life in between
Patrick and Laura are optimistic, as bright and cheerful as the birds of paradise behind them. They are committed to not defining their life by cancer. They travel and enjoy their time, which is possible through the support of a medical team that is more flexible in organising Patrick’s treatments “so that we can have life in between. So we can live our lives as though it doesn’t just revolve around cancer.”

Patrick is now a patient advocate and will be attending the EAU24 Patient Day session on penile cancer. The session will focus on what physicians can do to anticipate the needs of long-term survivorship for patients and their families, such as Patrick and Laura.

Shared decision-making; the EAU Patient Office perspective
Shared decision-making (SDM) is a concept that to this day is still poorly understood, and rarely implemented. Yet, there is increasing recognition of its importance in improving patient satisfaction with treatment, while patients are increasingly demanding more information and involvement in their healthcare. Urologists and national societies seek reliable methods and tools that facilitate SDM.

SDM brings together the patient’s values, goals and preferences with the best available evidence about benefits, risks, and uncertainties of treatment to reach the most appropriate healthcare decisions for that person.

The EAU Patient Office will be spearheading SDM in the coming years; creating awareness among HCPs in the field of urology and urology patients, and adding value to our members with the development of SDM support tools, with the ultimate goal of improving the patient experience and outcomes.

Patrick Howard will be joining the panel for the Patient Day roundtable Penile cancer: The importance of partnering with patients in procuring data

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See what's on the agenda at the EAU24 Patient Day, in Paris from 5-8 April 2024. This article first appeared in the January/February 2024 edition of European Urology Today.