‘Networking’ against sarcomas, the information campaign is underway

They are rare and potentially aggressive tumors, difficult to diagnose due to non-specific symptoms and require a multidisciplinary approach at reference centers: sarcomas, tumors that affect the body’s supporting tissues, and which can arise in any organ, at any age. , represent 1% of all cancers and in Italy, as each of their main subgroups affects less than 6 out of 100 thousand people every year. “Numerous obstacles that patients encounter on their treatment path due to the rarity and great heterogeneity of these tumors, of which about 100 different types have been identified – experts warn – diagnoses that may be inappropriate or late, treatments that are not optimal , difficulties in accessing new drugs, lack of information, starting with that on the specialized centers to turn to “. In order not to leave patients and families alone and build a ‘community network’ around them, in July, the international month of sarcoma, the ‘Trust Paola Gonzato-Rete Sarcoma Onlus’ promotes and launches the 2021 information and awareness campaign’ Let’s network against sarcomas: the importance of the network, the value of research and the role of institutions’. The initiative is carried out with the patronage of the National Agency for Regional Health Services (Agenas), the National Federation of Orders of Surgeons and Dentists (Fnomcoe), the Italian Rowing Federation, the National Center for Oncological Hadrotherapy (Cnao ) and Sarcoma Patients EuroNet (Spaen); is supported by various scientific societies and has obtained the membership of local associations and national federations operating in the area of ​​sarcomas and more generally in oncology.A ‘call’ addressed to public opinion, the media and institutions so that these patients are not more invisible and discriminated by the rarity and complexity of the pathology and can obtain answers to their needs, primarily through the complete implementation of the National Network for rare tumors (Rntr). Throughout the month of July, a video with informative and emotional content together with infographics will promote awareness of sarcomas on social channels. All citizens will be able to show their support to patients and families by personalizing their Facebook profile photo with a frame inspired by the #facemoretecontroisarcomi campaign. “Sarcomas add the complexity of rarity to that of oncological disease. Information is the basis for creating ” social awareness’ and make visible patients who have greater difficulties than others in obtaining correct diagnoses and appropriate treatments, with direct consequences on their lives, on the probability of recovery, on survival itself – declares Ornella Gonzato, president of the Paola Gonzato Trust – Rete Sarcoma Onlus ‘and member of the board of Sarcoma Patients EuroNet (Spaen) – information helps to orient oneself, to reduce fear, to avoid unnecessary alarmism and at the same time to immediately turn to dedicated reference centers. This campaign – he continues – aims to highlighting that rare does not mean only: in the area of ​​sarcomas a community made up of a king is growing of associations or rather organizations of the Third Sector, of researchers, of Institutions that together, with distinct roles and responsibilities, are committed to giving concrete answers to patients so that hope becomes a reality of care. But more needs to be done – he warns – to immediately activate the National Rare Cancer Network (Rtnr) and its connection, on the one hand, with the European Euracan Network and, on the other, with the regional oncological networks is the most concrete response that patients expect. “What makes the diagnosis of these tumors complex is the fact that sarcomas are often initially easily confused with very frequent diseases, such as those that occur following any trauma (for example a contusion or hematoma) or as some common benign tumors and not of concern such as lipomas. The lack of easy-to-apply diagnostic tests make screening programs impracticable. “According to the European Strategic Agenda on Sarcoma 2017 – the associations recall – up to 40% of diagnoses are incorrect and only 22% of patients participate in clinical trials. If the patient is taken care of outside a referral center dedicated to sarcomas, important phases of the care path can be compromised, starting with the indication of an appropriate therapy. To resolve most of these critical issues, it is more urgent than ever to start the National Network for Rare Tumors (Rtnr), established in 2017 but still not fully active. “” The National Network for Rare Tumors as an institutional body of the NHS has not yet been activated “, observes Paolo G. Casali, coordinator for sarcomas in the Euracan European Network and for adult rare solid tumors in the National Rare Tumors Network, director of the Medical Oncology Unit 2, Fondazione Irccs National Cancer Institute of Milan.” The Rntr will be able to solve the many critical issues in the care path of patients with sarcomas and may also limit medical migration, because the patient will move less, while his clinical information will move more. The RNTR must become a resource of the NHS for patients, it is urgent to activate it immediately “. It is above all from politics that today patients and families expect certain and adequate responses to the clinical and organizational needs of those living with sarcoma. also through the experience of leading representatives of politics, directly involved in the disease such as Laura Boldrini, former president of the Chamber of Deputies: “Suddenly, in March 2021, I directly experienced the existence of words that until then I had only heard of it in the media – he comments – words like chondrosarcoma, osteosarcoma, Pet, titanium prosthesis. Hearing them is one thing, experiencing them on your own skin is another “.” Information – he maintains – is particularly important: knowing who to contact immediately, which specialist centers can save the lives of many patients. Treatment and research in rare tumors go hand in hand and need maximum synergy and sharing between specialist centers. And for this reason it is urgent to give substance to the national network of rare cancers. To this end, the institutions must do their part as soon as possible, with the commitment of those who are aware of the importance of acting “.

1 thought on “‘Networking’ against sarcomas, the information campaign is underway”

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