Prostate cancer: half a million live with it, rehabilitation a priority not to be 'ashamed' of

Prostate cancer today is associated with a very high survival rate: 91 per cent. This is why the quality of life of the almost half a million men living with the disease becomes a priority. In order to effectively deal with the consequences of treatment - from physical to psycho-emotional challenges - rehabilitation emerges as a crucial element to support the patient across the board (emotional well-being, physical problems and body image), with the aim of ensuring that the years of life gained are fully lived with a high degree of well-being and autonomy. Access to this essential rehabilitation support is, however, often hindered by a persistent sense of shame and silence surrounding many post-treatment issues. In order to turn taboo into action, Favo (the federation that brings together voluntary associations in oncology) and Europa Uomo, in addition to a series of info-training activities, have set up the 'Courageous Dialogue' initiative: an invitation addressed to patients and caregivers to openly share their experience to encourage this breaking of silence.

 The initiative primarily aimed to break the persistent silence and sense of shame surrounding many post-treatment issues for prostate cancer patients. The high survival rate (91%) associated with the disease has shifted the primary focus of care to the quality of life of men living with the disease, highlighting how rehabilitation is crucial as a 'necessary bridge of integration' to support the patient across the board. The 'Courageous Dialogue' initiative was an invitation to patients and caregivers to openly share their experience, an invitation that was reflected in the touching testimonies of patients that preceded each session. For Elisabetta Gardini, president of the Parliamentary Intergroup on Rare and Oncohaematological Diseases, 'quality of life is the primary and inalienable focus of care, a fundamental right that institutions must guarantee in every single phase of the oncological pathway. Faced with prostate cancer and its consequences, we are called upon to overcome the silence and shame that still hinder access to essential rehabilitation support. To achieve this, men must look to the courageous example set by women who, by facing their illnesses without taboos and speaking openly about their physical, emotional and relational challenges, have succeeded in achieving fundamental results, putting rehabilitation and wellbeing at the centre of the health agenda".

The panel of experts offered a multidisciplinary view of prostate cancer, starting with Massimo Di Maio, President of Aiom, who said that 'prostate cancer has seen many therapeutic advances and numerous new pharmacological options in recent years. Today there is also a tendency to anticipate treatment at an increasingly early stage of the disease. These patients are often elderly, frail, with concomitant diseases, and attention to the tolerability of treatments is crucial. Quality of life must be a concrete objective of the treatment proposal, seeking the favourable balance between the positive impact of therapy on disease and the negative impact of toxicities. Patient Reported Outcomes literally allow us to "give voice" to the patient, and it is important that the oncology community's attention to this aspect, in studies and clinical practice, has definitely increased'. This focus on the personalisation of care and the impact on the patient's life is most effective right from the initial stages of the diagnostic-therapeutic pathway. "Discovering the disease - states Stefano Pergolizzi, AIRO President - in its early stages and immediately starting a well-structured treatment pathway - which may include, together with specialists, the choice between radiotherapy and surgery - increases the chances of recovery and allows one to live with serenity. Even when the disease is more advanced, the goal is always to ensure the best possible well-being, because quality of life is important at all times."

The goal of ensuring the best quality of life and minimising the toxic impact of treatments is also underpinned by more accurate and less invasive early diagnosis, a central aspect of the initiative illustrated by Giuseppe Gorini, Head of Screening Evaluation at ISPRO, which aims to revolutionise the approach to prostate cancer screening. "This is an important initiative of the Ministry of Health, within the framework of the CCM 2023 programme, to revolutionise prostate cancer screening in Italy, aiming to overcome the current opportunistic model (based on spontaneous PSA prescription) to assess the feasibility of an organised programme on a national basis. The project, led by the Region of Tuscany in collaboration with a large partnership (including CPO Piedmont, the Region of Lombardy and the Mario Negri Institute), is analysing two fronts: the diffusion and criticality of spontaneous screening on about 15,000 interviews in men aged 40-80 (through the PASSI and PASSI d'Argento systems) and the effectiveness of an innovative protocol integrating Magnetic Resonance Imaging (MRI) as a triage tool in four pilot studies. This innovation promises to reduce by more than 50% the number of subjects with elevated PSA to be submitted for prostate biopsy. The final work, involving oncologists, urologists, health authorities and experts, has identified 16 crucial issues for the transition to organised screening and will propose to the Ministry of Health concrete solutions on protocol, recruitment, monitoring, and ethical and communicative management of the pathway'.

However, the effectiveness of clinical treatment must necessarily be combined with the recovery of full male identity. "Silence about sexuality after prostate cancer is a real social disease. Bodies are cured with increasingly advanced technologies, but silence is only cured with words. With 'Beyond Silence' we want to say clearly that healing is not just the absence of disease: it is being able to continue to feel like a man, a partner, a living person,' says Claudio Talmelli, President Europa Uomo APS. "The success of initiatives such as Oltre il Silenzio (Beyond Silence), carried out with Europa Uomo, unequivocally demonstrates that working in synergy with associations that deal with specific cancers is the only way to achieve concrete and measurable results for patients," says Francesco De Lorenzo, President of Favo. Joint action is essential to overcome the barriers of silence and ensure that crucial needs, such as psychosexual and physical rehabilitation, are fully met. Today, unfortunately, post-treatment rehabilitation is still too often denied or difficult to access, undermining patients' full Quality of Life. For this reason, joining forces and federating experiences and voices is the winning strategy to turn taboo into action and to ensure comprehensive patient care that fully includes the right to cancer rehabilitation".