Partly because there is a tendency to minimize, partly out of shame, partly because there is no knowledge: these are some of the reasons why 61% of people have never gone to their doctor to report signs or symptoms such as blood in the urine or burning when urinating. 34% do not know which specialist deals with this pathology, only 52% know that the main cause is smoking while almost 50% are convinced that the main risk factor is genetic predisposition. These are some of the data that emerged from the survey conducted as part of the U-Change project on 1,000 people aged 18 and over with the aim of understanding how much citizens know about bladder cancer. A photograph that makes it clear that there is little awareness and knowledge of this type of tumor: the V PaLiNUro Congress (Patients Free from Urothelial Neoplasms), which will take place in Milan on November 19, addressing issues related to aspects such as rehabilitation and quality of life, but also therapeutic and diagnostic innovations on which there will be continuous discussion between patients and medical staff- scientific.
U-Change: a ‘team’ of 21 experts
Precisely with the aim of analyzing the current treatment model for bladder cancer, identifying its critical issues and designing a future treatment model, the progetto U-Change conceived and created by Nume Plus of Florence with the non-conditioning contribution of Astellas Pharma SpA which was attended by 21 experts including clinicians (doctors, scientific societies, sector specialists in the oncology and urology fields), patients (patient associations, caregivers, nurses, journalists) and institutions (hospital pharmacists, directors of ASL and hospital facilities, national, regional and local health economists). “As part of the U-CHANGE project – declares Sergio Bracarda, director of the Department of Oncology and SC Medical and Translational Oncology of the Santa Maria di Terni Hospital and President of SIUrO, the Italian Society of Uro-Oncology – we have created a Multidimensional consensus, with the ambitious goal, for the first time, of putting on the same level the various actors who intercept the patient affected by advanced bladder cancer in the various stages of his journey: clinicians, patient associations, caregivers, physiotherapists, nurses, journalists sector, hospital pharmacists, directors of ASL and hospital facilities, national, regional and local health economists. In this way, all the panel of the experts explored the different dimensions, discussing and agreeing on both the current limitations of the care models and the improvement proposals for the construction of an even more effective future care model”.
The silent tumor
That of the bladder and? the fourth most common cancer after the age of 50. In Italy in 2021 this neoplasm was diagnosed in 25,500 people and caused over 6,000 deaths. “This tumor – explains Dr. Bracarda – initially develops in the inner lining of the bladder (urothelium), but can spread to the muscular wall that surrounds it and reach the lymph nodes or other organs such as the lungs, liver, bones. For this reason, a timely diagnosis is essential, because it influences future survival, as well as the therapeutic approach which, depending on the stage of the tumor, also includes combined interventions including surgery, chemotherapy, radiotherapy and immunotherapy”. For the originality and completeness of this approach, the U-Change project has received the patronage of AIOM (Italian Association of Medical Oncology), SIUrO (Italian Society of Uro-Oncology), SIFO (Italian Society of Hospital Pharmacy and Pharmaceuticals of Healthcare Companies), FAVO (Italian Federation of Volunteer Associations in Oncology) and PaLiNUro (Patients Free from Urothelial Neoplasms).
The point of view of hospital pharmacists
Some representatives of the institutions also participated in the U-Change project, including Emanuela Omodeo SaleDirector of Pharmacy of the European Institute of Oncology in Milan and scientific director of the Italian Society of Hospital Pharmacy (SIFO: “Thanks to this innovative project for the first time for an oncological pathology as dramatic as advanced urothelial cancer, it was possible to a 360-degree fine-tuning of all the numerous aspects that concern the various actors involved.Today, even the hospital pharmacist is increasingly involved with oncological drugs, because he can give concrete support to the clinician and the decision-maker, on the best acquisition methods , preparation and dispensing of therapies in the intra-hospital setting and in the subsequent phase from discharge onwards”.
The patient’s point of view
Alongside clinicians and institutions, the other working table of the U-Change project was that of patients from whom the need to provide more information on this tumor emerged: “It is necessary to promote effective information campaigns to increase the level of knowledge both of the risk factors and of the new therapeutic possibilities – he declares Edward Fiorini, president of APS PaLiNUro Association. The U-Change project confirms the need for Scientific Societies and Patient Associations to involve Institutions and other healthcare professionals in information campaigns on the importance of early diagnosis, risk factors and treatment opportunities through communication tools and differentiated targets. Spouses, partners and family members are often poorly informed, trained and supported at different stages of the disease journey. Therefore, it is important to provide him with knowledge services of the pathology, listening groups, educational material”.
How much (little) do citizens know
As part of the U-Change project, a ten-question survey was conducted and 1,000 participants answered online. 88.6% know that this tumor affects the bladder (according to 4% it concerns the prostate and 6.5% do not know). Among the 60% of the participants who stated that they know which doctor deals with this neoplasm, 62% indicated the urologist, 31.4% the oncologist, 6.8% the andrologist and the 4% the gynecologist. There is good awareness of the early warning signs of bladder cancer: 80% indicate blood in the urine (haematuria), 35% burning and pain when urinating, 26% frequent urination but 61% declares that he has never gone to his doctor for one of these symptoms and those who did in 17% of cases received a prescription for a generic antibiotic (17%), blood tests (13%) or to drink two liters of water per day (12%).
The risk that comes from the cigarette
52% know that cigarette smoking is the most important risk factor for bladder cancer, but there is also 50% who believe familiarity is responsible and 20% who do not know it: “Cigarette smoke – clarifies Dr. Bracarda – is alone responsible for about 50% of bladder tumors, but there are also other risk factors such as occupational risk, for example exposure to dyes, responsible for another 5-6% of cases, and diet in which alcohol seems to be involved. Environmental carcinogens include the presence of arsenic in drinking water, aromatic amines and agricultural pesticides”. The Survey also investigated the sources of information: 44.4% inquire about this type of cancer by consulting online sites or social media with the risk of running into fake news. When asked what the most impactful consequences of bladder cancer are, 64% answered incontinence, 56% disabled it? work and a reduced quality of life and 35% difficulty? sexual. Little knowledge of the participants on the possibilities of treatment and early diagnosis.