Sometimes, even in the face of repeated requests, one has the feeling that it is difficult to move reality. In fact, there are needs that have been known for years, which are repeatedly referred to by patients, associations and healthcare professionals, but which continue to not find adequate answers. For those suffering from NETs (neuroendocrine tumors) the situation is both simple and tremendously complex. Because it’s hard to get answers.
Psychological support, nutritional assistance, an organized network of reference centers and local structures capable of collaborating: these are far from new needs for those living with a neuroendocrine tumor, but still far from being guaranteed in a structured and uniform way. On this basis the communication campaign begins “There are needs that don’t always find space – Help us make them emerge”promoted by the La Lampada di Aladino ETS Patients Association, with the patronage of AIOM, AIOM Fondazione and FAVO, on the occasion of Net Cancer Day on 10 November.
More attention to pathology
Starting from the World Awareness Day on Neuroendocrine Tumors (NETs) and in the following days, a campaign on social channels (Instagram, Facebook and LinkedIn) and on the La Lampada di Aladino ETS Association website will give space to direct testimonies collected in four treatment centers across the country. Voices of patients, caregivers and clinicians who tell what often remains on the margins of the specialist visit and the therapeutic path: daily difficulties, fears, need for accompaniment and requests for care that does not end in pharmacological therapy.
Neuroendocrine tumors, with an estimated incidence of 5-6 new cases per year per 100,000 inhabitants, are rare and extremely heterogeneous neoplasms in terms of biological behavior, clinical manifestations and evolution. They originate from neoplastic cells capable of secreting hormones that regulate various bodily functions. They can arise in different parts of the body, but usually occur in the gastrointestinal tract, pancreas and lungs. They represent a complex pathology that requires multidisciplinary clinical management. Diagnostic and therapeutic advances have expanded the possibilities of recognition and treatment, but the rarity of the pathology continues to make patients’ journey complex: from diagnosis, sometimes late, to the search for reliable information, up to the identification of professionals and centers with specific skills. And when the disease becomes chronic, clinical management is accompanied by the need to find a new balance between care, work, relationships and daily life.
Answers to find
“The National Oncology Plan 2023-2027 provides for the implementation of psycho-oncological pathways and nutritional interventions for the various tumors and in the various phases of the disease, to be integrated into the PDTA. It is necessary to transform good intentions into structured services. Particularly in chronic conditions, it is important to move from a logic of healthcare provision to that of taking charge, with courage and vision. To guarantee equity in access to care and avoid the phenomenon of healthcare mobility of patients with neuroendocrine tumors it is It is essential that the National Rare Cancer Network is truly functional”
is the comment of Davide Petruzzelli, president of the La Lampada di Aladino ETS Patient Association and vice-president of FAVO and AIOM Foundation.
Among the needs that emerge most clearly from the testimonies is that of psychological support, often absent or entrusted to the ability of associations to fill the gaps in the system. A need that concerns the moment of diagnosis, the burden of follow-up, the uncertainty linked to the evolution of the disease and living with treatments that can accompany the person for many years.
Equally important is the topic of nutrition: patients ask for dedicated paths, capable of preventing or combating malnutrition, dealing with the consequences of the disease and treatments and concretely contributing to maintaining the quality of life.
Treatment paths
“In the management of neuroendocrine tumors, pharmacological therapy represents only part of the treatment path. Our clinical objective must increasingly be oriented towards global management, capable of responding to the profound needs of patients facing outpatient or chronic therapies”
underlines Antonella Bianco, oncologist at AORN Ospedali dei Colli di Napoli.
“Psychological well-being and nutritional support are not secondary elements, but fundamental pillars that directly impact treatment tolerance and quality of life. Optimizing existing resources and implementing dedicated support paths in the area, even for those who are not hospitalized, is a necessary step to guarantee care that is truly close to the person at every stage of the disease”.
Alongside healthcare needs, the need for greater organization of the healthcare system clearly emerges. For patients with neuroendocrine tumors, the possibility of promptly accessing specialist skills, receiving a correct diagnosis and benefiting from shared pathways between reference centers and local structures represents a decisive element. Patients are asking for a quicker diagnosis, to be treated by those who really know the disease, for the psychological burden of follow-up to be recognized and for knowledge to be shared. They are different needs, but they have a common response: a network organized according to the integrated model between the Hub reference center and the peripheral Spoke centres. Treatment close to home, without losing quality. Living for years with an oncological diagnosis means facing a challenge that goes beyond controlling the disease: it means preserving autonomy, relationships, planning and quality of life.
“For this reason, survivorship, or life with and after an oncological diagnosis, must be an integral part of the treatment path of these patients. Each patient must be able to count on a personalized care plan, in line with the European initiatives (Personalized Survivorship Care Plan). A plan that responds to clinical and psychosocial needs, addresses the consequences of the disease and treatments and protects the quality of life”
comments Alexia Bertuzzi, oncologist at the Humanitas Cancer Center in Rozzano (MI) and president of the Scientific Committee of La Lampada di Aladino ETS.
