6th CCI Europe Regional Meeting, 8 – 10 May, 2015 Malmö, Sweden - Angelo Ricci - FIAGOP, Italy

The Italian Network of ParentAssociations of Children and Adolescents with cancer and leukemia

MEMBERS OF FIAGOP

6th CCI Europe Regional Meeting, 8 – 10 May, 2015 Malmö, Sweden - Angelo Ricci - FIAGOP, Italy

Fotografia Laura Larmo36th CCI Europe Regional Meeting, 8 – 10 May, 2015 Malmö, Sweden - Angelo Ricci - FIAGOP, Italy

WHAT ADOLESCENTS DESERVE(and what we are trying to do)

6th CCI Europe Regional Meeting, 8 – 10 May, 2015 Malmö, Sweden - Angelo Ricci - FIAGOP, Italy

Adolescents and young adults with cancer: why do they require specific care?

Teenagers have complex and unique aspects and needs, related to the onset ofthe disease at a particularly delicate process of physical and psychological growth;in addition, we may say they inhabit a "no man's land", being neither the focus ofattention of pediatric oncology, nor that of adults

Peculiar aspects in particular palliative care, death and bereavement.

Here some clinical features scpecific to TYAs cancer

TYAs may have specific pharmacology and toxicity profiles that may be relevant in treatment protocols

Epidemiology - Unique spectrum of cancers:TYA may have pediatric-type tumors, adult-type tumors or malignancies with a peculiar peak of incidence in this age range

Tumor biology and clinical behavior: not the same as in younger or older people

Transitional programs

Distant sequelae

6th CCI Europe Regional Meeting, 8 – 10 May, 2015 Malmö, Sweden - Angelo Ricci - FIAGOP, Italy

6th CCI Europe Regional Meeting, 8 – 10 May, 2015 Malmö, Sweden - Angelo Ricci - FIAGOP, Italy

6th CCI Europe Regional Meeting, 8 – 10 May, 2015 Malmö, Sweden - Angelo Ricci - FIAGOP, Italy

A special meeting made for the young, mostly done by them, speaking of their clinical and psychological aspects,

their needs and fears, love, spirituality…

6th CCI Europe Regional Meeting, 8 – 10 May, 2015 Malmö, Sweden - Angelo Ricci - FIAGOP, Italy

6th CCI Europe Regional Meeting, 8 – 10 May, 2015 Malmö, Sweden - Angelo Ricci - FIAGOP, Italy

What does it mean to have a cancer duringadolescence, a so delicate period of development ofidentity, personality, relationships?

6th CCI Europe Regional Meeting, 8 – 10 May, 2015 Malmö, Sweden - Angelo Ricci - FIAGOP, Italy

Why me? Spirituality and hope

For many patients confronted with serious diseases, spirituality is an important resource for coping. It is not just the fact that spiritual support is associated with better quality of life and can contribute to patients’ improvement and recovery: adolescents often pose serious questions that need adequate responses

What’s happening to me?

6th CCI Europe Regional Meeting, 8 – 10 May, 2015 Malmö, Sweden - Angelo Ricci - FIAGOP, Italy

psychological aspects

change of the previous self-image break-off of the process of development of personality and identity, and the planning of the future withdrawal into themselves, isolation dependence on adults (parents, doctors), exactly when they are developing their sense of independence a body that suffers, that do notwork well, that can die fear

6th CCI Europe Regional Meeting, 8 – 10 May, 2015 Malmö, Sweden - Angelo Ricci - FIAGOP, Italy

I want to know everythingabout it … or maybe not

Could we be faster?

6th CCI Europe Regional Meeting, 8 – 10 May, 2015 Malmö, Sweden - Angelo Ricci - FIAGOP, Italy

diagnostic delay, why?

Teenagers come to diagnosiswith greater delay thanchildren and this can haveconsequences on the chances ofrecovery

Box Plot of Diagnosis Delay, according to Age

Age

0-4 5-9 10-14 15+

Dela

y

(da

ys

)

0

100

200

300

400

500median 137 days

> 15 year olds

median 47 days0-14 year olds

6th CCI Europe Regional Meeting, 8 – 10 May, 2015 Malmö, Sweden - Angelo Ricci - FIAGOP, Italy

How will you treat me?

… and where?

EUROCARE 1995-2002 5-year OS

(Gatta et al. Eur J Cancer 2009)

age<15 years

age15-24 years

LLA 85% 50%

osteosarcoma 77% 60%

Ewing sarcoma 66% 48%

0.77

0.97

1.04

0-14 years 15-19 years

0.10

0.23

0.33

16

Love, sex, chemo and rock and roll

6th CCI Europe Regional Meeting, 8 – 10 May, 2015 Malmö, Sweden - Angelo Ricci - FIAGOP, Italy

TYAs psychology is characterized by seeking independence,maintaining relationships with friends (role of social networks),risk-taking (smoking, alcohol, substance use, sexual health): allthis may affect compliance and adherence to treatment

Running like the wind

6th CCI Europe Regional Meeting, 8 – 10 May, 2015 Malmö, Sweden - Angelo Ricci - FIAGOP, Italy

disease and sport

Sport is part of the life of a young, as the game for the child. Through sport we learn to know our body, we experience limitations; sport reinforces the sense of competence and self-esteem. Following the diagnosis of cancer and during the period of treatment, however, it often happens that adolescents who previously practiced sport leave it and not resume it even after the end of treatment. Actually, the scientific evidence does not discourage sport during cancer treatment and, more so, at the end.

And I still want to sing

6th CCI Europe Regional Meeting, 8 – 10 May, 2015 Malmö, Sweden - Angelo Ricci - FIAGOP, Italy

Through music, adolescents can communicate to others what they are unable to say in so many words: their search for their own identity, the sense of life, love and sex, the urge to rebel, their hopes for the future…Music as a means of expression and as a complement to the medical care and psychological support that teenage patients need

6th CCI Europe Regional Meeting, 8 – 10 May, 2015 Malmö, Sweden - Angelo Ricci - FIAGOP, Italy

Special thanks to:Dr. Andrea Ferrari who in addition of being the leader of this movement in favor of adolescents with cancer, is the author of most of the slides you just saw

Serena Battilomo, who is a volonteer of Peter Pan and a great friend of Fiagop: thanks to her work she allowed us to get in touch with the Health Ministry

“SIAMO” in Italian means “we are”, but it can be also “SI’ AMO”, that means “yes, I love”.

www.progettosiamo.it

6th CCI Europe Regional Meeting, 8 – 10 May, 2015 Malmö, Sweden - Angelo Ricci - FIAGOP, Italy

SIAMO has been founded by AIEOP with the essential support of the National confederation of parent organizations of children and adolescents FIAGOP and in collaboration with the adult cooperative groups Associazione Italiana di OncologiaMedica AIOM and Società Italiana di Ematologia SIE.

Major goals:

To be a cultural movement … and meanwhile an inter-societies group correlated with cooperative groups running clinical trials

Having paediatric and adult medical oncologist working together, for the first time in Italy

Involve various stakeholders such as nurses’ groups, psychologists and social workers, advocacy organizations, survivors’ groups, cancer agencies, family physicians organizations, and universities

To be the reference for mass-media, to involve the public and its awareness…

… and the official structure to achieve the support from national health service organizations and governments, still lacking in Italy

6th CCI Europe Regional Meeting, 8 – 10 May, 2015 Malmö, Sweden - Angelo Ricci - FIAGOP, Italy

After the first meeting at the Ministry of Healt…

6th CCI Europe Regional Meeting, 8 – 10 May, 2015 Malmö, Sweden - Angelo Ricci - FIAGOP, Italy

There is no reason why

And there is no reason why someone gets cancer in high schoolBut there is a reason why some of them get better

Early diagnosis is important. It comes from you.- If you feel a pain that doesn’t have any other medical reason and that always comes back- If you have a swelling you don’t know where it comes from and that doesn’t heal in many weeks- If you have been feeling tired for a long time, with no clear reason- If you often have bleedings- If you have been losing a lot of weight in the past weeks- If you have a mole that changed its form, color or dimension- If you experience any long lasting symptom that you don’t understand,

Don’t panic: consider there may be lots of explanations for it but just to be sure, we suggest you see your doctor

Action of SIAMO for the next National Oncologic Plan

1. give priority to TYA with cancer issues

2. define the specific criteria to allow centers (whether they are pediatric or adult units) to treat adolescents withcancer, as:a. no restrictive age cut-offsb. multidisciplinary teamc. cooperation pediatric and adult oncologistsd. clinical trials availabilitye. adequate setting (dedicated spaces)

f. staff (coordinating nurse, social workers, psychologists, teachers, activity

organisator)

g. fertility preservation programsh. transition programs

6th CCI Europe Regional Meeting, 8 – 10 May, 2015 Malmö, Sweden - Angelo Ricci - FIAGOP, Italy

Activity Scheme for the next months:

Research: Epidemiological analyses (in cooperation with Health Ministeryoffices)

Cultural advancement: Grant to support local projects(Hopefully both in cooperation with the Fondazione Umberto

Veronesi Charity)

Communication and awareness activities:High Schools (possibly in cooperation with Health and EducationMinistry)Family doctors (meetings, information material) – Pilot study in Milan with FUV? Media relationsPress campaign (e.g.: the TYA survivor is just like everybody else)International meeting of ENTYAC (European Network TeenagersYoung Adults with Cancer) in Italy