AYA (Adolescents and Young Adults): is the title of the project that the Humanitas Cancer Center dedicates to young adult cancer patients, between 16 and 39 years of age, treated at the institute. A path, one of the first experiences in Italy, which accompanies them from both a clinical and psycho-social point of view. A guide for everyday life, hospitalization, family and work. There are many questions that young patients ask themselves: whether they will be able to have a child after the tumor, whether there is a way to overcome the mental blockage and anxiety that talking about the disease generates or whether they will find a job.
Malignant onco-hematological diseases (including lymphomas, leukemia, sarcomas, germinal cancers, brain tumors) in the 16-39 age group are the most common cause of death in industrialized societies after homicides, suicides and unintentional accidents. In terms of numbers, there are 72,000 new cases a year in the United States, around 2,500 in Canada and 66,000 in Europe. Out of these, 15,000 cases are registered in Italy. In the last twenty years at least 300 new cases of young people aged between 16 and 39 have been dealt with every year in Humanitas, mainly from the province of Milan but also from other regions, in particular from Southern Italy.
Teenagers and young adults, the prognosis is worse
As Professor Armando Santoro, Head of Humanitas Cancer Center and lecturer at Humanitas University, pointed out: “Adolescents and young adults belong to a no man’s land, where the prognosis is worse than that of pediatric patients and adult patients. While survival in onco-hematology for children has increased significantly over the past 20 years (by 30% before age 4 and by 40% between age 5 and 15), only a slight improvement has been seen in the AYA group. In this context we can certainly speak of a real clinical, biological and psychosocial gap”.
This is where the Humanitas project fits in. “The onco-hematological patients AYA – adds Dr. Alexia Bertuzzi, oncologist and project manager at Humanitas – share a peculiar epidemiology, common biological characteristics and a set of unique medical and psycho-social needs. From here we started the AYA project which, without the great enthusiasm and collaboration of the young people, could not have become a reality”.
A dedicated outpatient clinic and a clinical-assistance course
In their clinical path the young AYA patients are supported by the specialists of the Cancer Center of Humanitas who follow them in all phases of treatment through a multidisciplinary approach (genetic consultation, gynecology dedicated to fertility preservation, cardiology, endocrinology, physiotherapy, psychology), which aims to reduce long-term clinical complications and improve the quality of life, avoiding that they postpone a control or do not follow a therapy. Every step of the route is fundamental and postponements should not be allowed. “When you are young, it is easier to think that life ends in a nuclear war than in a terminal illness. This is the spirit and the soul of our boys and their incredible strength: the youth does not bend to anything, not even to a clinical diagnosis”, added Dr. Bertuzzi.
A special room and weekly courses
There is a dedicated room, on the first floor of Humanitas building 2, where the children spend their free time. Between a therapy and a check-up, they gather to have breakfast, watch a movie, read a book or challenge themselves to video games. There is also a calendar of weekly courses, such as:
- A healthy-cuisine laboratory run by the scientific chef-divulgator of the Marco Bianchi Umberto Veronesi Foundation who, together with the children, creates healthy recipes to keep insulin under control, extinguish inflammation, eliminates toxic substances, blocks free radicals, reduces the effect of estrogen and gives strength to the immune system.
- A photography workshop curated by professional Maki Galimberti, one of the most highly regarded photographers in Italian publishing, famous for his portraits of personalities from the worlds of entertainment, politics and sport but also for his magnificent reports around the world.
- A creative writing workshop by Prof. Sofia Mede Repaci and Prof. Viviana Ponti. The children are accompanied on a journey into a painting: starting from a work of art, they develop reflections and suggestions that lead to real stories.
- A theatre workshop with Annig Raimondi, founder of the theatre company PACTA, where she is an artistic director. The course starts from the choice of an article that is scenically reworked by the students in a path that winds between reality and imagination, and aims at a representation of life, natural and essential, using their body and their whole being.
A logo chosen by the boys
In the special room, the children asked themselves what face the project might have. Which logo best represents the soul of the project? The most voted idea was the lotus flower which, for the Orientals is the symbol of life and virtue, in ancient Greece was the symbol of beauty and eloquence, today represents admiration. “We chose it because it is a flower sober in its shape that while remaining clean, has its roots in the mud of reality. It also represents hope for all of us because lotus flowers are perennial aquatic plants,” they explained.
An exhibition and a calendar
Photographs, drawings and thoughts signed by patients of the AYA project. This is the heart of the exhibition “HERE and NOW” on display on the first floor of the Building 2 of the hospital: over 80 photos and texts, sent by young people under treatment at Humanitas Cancer Center with the aim of conveying the emotion and beauty of everyday life. Among these, the 14 photos that compose the 2018 calendar, selected by a jury of experts, are distributed in all the cancer departments of Italy. A synthesis of affection and lived life, a help to move forward and never stop hoping.
The term AYA
‘Adolescents and Young Adults’ defines a specific age group between the world of the child and that of the adult. The definition of the age range to which we refer when talking about AYA has been the subject of numerous debates and changes over the years. In particular, in the UK the Teenager Cancer Trust association is dedicated to AYA patients between 16 and 24 years of age, in Canada AYA oncology is concentrated between 15 and 29 years of age, in Australia between 15 and 25 years of age and in the United States it is recognized between 16 and 39 years of age.
Click here for the complete programme brochure.