survivors Archives - Youth Cancer Europe (YCE)

Youth Cancer Europe is excited to announce that our “Recommendations for Equitable, Diverse and Inclusive Cancer Care in Europe” Policy Paper will be launched in the European Parliament in Brussels!

The event will bring together Members of the European Parliament, health organisations, patient advocacy groups, and other stakeholders, and will invite young people living with and beyond cancer to share their experiences, their research findings and policy recommendations.
Discussions will have a strong focus on the needs of minorities and the especially vulnerable groups and disenfranchised communities like Roma, LGBTQ, immigrant, and other underserved populations.

The “Recommendations for Equitable, Diverse and Inclusive Cancer Care in Europe” collaborative document was developed with patients in the driving seat and benefited from large stakeholder input within the EU co-funded EU-CAYAS-NET project to deliver on Europe’s Beating Cancer Plan, resulting in recommendations that are designed to be aspirational, actionable, and most importantly, achievable.

Check out the full agenda here

The event, organised by Youth Cancer Europe, is set to take place on Tuesday, March 21, from 11-13 CET, in Room ANTALL 6Q1, and will be hosted by MEP Stelios Kympouropoulos.

Seats are limited, please register here today so we can save a spot for you!

2023 Summer was a busy one for our team. Leading the work on Adolescent and Young Adult Cancer (AYA) Care in the EU-cofunded European Network of Youth Cancer Survivors project  EU-CAYAS-NETwe were on the move constantly.

We organised Peer Visits in three awesome European countries – Italy, Belgium, and the Netherlands. We visited a total of 5 hospitals, participated in many educational stakeholder meetings, and worked alongside an incredible team of 30 participants, eager to make a difference.

Now, you might be wondering: What’s all the fuss about? What exactly are these Peer Visits?

Let’s dive into it!

Peer Visits: An In-Depth Look

The concept of Peer Visits is rooted in observational research. It allowed our participants to step into the shoes of local service users (patients) and healthcare professionals, and observe their natural work environment, gaining valuable insights through three types of observations:

Naturalistic Observation: Participants observed the environment where patients receive care and healthcare professionals are working.
Participatory Observation: They conducted interviews, took notes, and captured photographs during the guided tour of the hospitals
Structured Observation: They filled  in a carefully designed Peer Observation Form, focusing on specific aspects of AYA care.

This form of peer learning is designed to stimulate interaction, collaborative learning and solution-building. Our goal is to contribute to a “Specialist AYA Units Minimum Standards” position paper, which will be developed based on peer study reports resulting from Peer Visits to AYA oncology departments in Italy, Belgium and the Netherlands. We were also able to provide the collaborating institutions with valuable feedback, along with practical takeaways that our participants can use to support health-policy initiatives in their own countries.

Gelato, tulips and Belgian waffles

Our journey began in Milan, Italy, where we were warmly welcomed by Dr. Andrea Ferrari and the fantastic team at Fondazione IRCCS Istituto Nazionale dei Tumori. We had a deep dive into the world of AYA care, youth projects, and support programs for young cancer fighters in Italy.

Group of young cancer survivors
Group of young cancer survivors

But the real magic happened when we met some remarkable Italian AYA patients – Giorgia, Adelina, Edoardo, Andrea, Giorgia B, Teresa, and Marta. Their stories touched our hearts, and we had some truly heartwarming and lovely conversations with them.

We also had a chance to catch up with our FORTEe project partners, William Guglielmo Zardo and Marco Chisari, and discuss the exciting plans we have in store for the future.

We later payed a visit to Fedro Peccatori at the Fertility and Procreation unit at the European Institute of Oncology and dropped by the headquarters of Europa Donna – The European Breast Cancer Coalition, where we met with Marzia Zambon, Martina Fontana, Paige Robinson, Giulia Pareschi, and Tanja Spanic.

Our next stop was in Ghent, Belgium. We had a strong start with engaging discussions at the Ghent University Hospital, led by the local AYA host team: Johan De Munter, Nathalie Belpame, Veerle Sey, and Karsten Vanden Wyngaert. We talked about healthcare, insurance, training for medical staff, and learned a lot about how they support young people with cancer. We are so grateful to all the AYA care experts who participated in our focus groups.

We discussed topics like helping minorities and long-term support for young people even after they finish their treatment.We also had stakeholder group meetings with Stichting tegen Kanker & Kom op tegen Kanker NGOs and had the privilege to visit several charitable funded initiatives on the hospital grounds. Another highlight of our trip in Belgium was our visit to Het Majin Huis in Ghent, an open support house, which left us feeling truly inspired.

During our session with Chloe De Roo from the Fertility service we talked about personalised preservation choices for young people. It was eye-opening to discover that professionals undergo specialised training to better assist AYAs.

Plus, no visit to Belgium would be complete without indulging in their famous waffles during the evening!

Our journey concluded in the Netherlands, Amsterdam, where we visited three hospitals in three cities, which are part of the National AYA ‘Young & Cancer’ Care Network: Netherlands Cancer Institute in Amsterdam, the Northwest Hospital Groups in Alkmaar and Radboud University Medical Center in Nijmegen.

Each visit provided invaluable insights into how these institutions operate and cater to the needs of AYA patients. We are incredibly grateful to Prof. Dr. Winnette van der Graaf, Dr. Eveliene Manten-Horst, Dr. Olga Husson, and their amazing team! Our discussions with them were not only super fruitful and insightful but also made our entire experience just amazing! We were thrilled to explore the Activity Centre and the Quality of Life Department. Plus, getting to catch up with our friends from the STRONG-AYA project and having more conversations was a great bonus.

Incredible guided tours led by local AYAs themselves, engaging group discussions, enriching learning moments, and meeting wonderful people – what more could we have hoped for? It was truly an unforgettable experience! Plus, we are proud to say that, by the end of our stay, we fully embraced the Dutch experience navigating public transport and coping with the moody weather !

A summer to remember

We are immensely grateful to all the healthcare professionals, institutions, and individuals who made this adventure possible. Your contributions will undoubtedly shape our ongoing efforts to support young individuals facing the challenges of cancer. We’re excited to bring back the knowledge and experiences gained during these Peer Visits to further our efforts in supporting young individuals battling cancer.

Read more on our General Report on AYA Cancer Care

For more information and updates follow EU-CAYAS-NET on Instagram, Facebook, Twitter, LinkedIn, or visit their official website.

Learn more about the projects we are leading within EU-CAYAS-NET and about our participation in other EU-funded projects here.

Earlier this month YCE patient advocates Nicola Unterecker and Mariana Coutinho have been invited to
take part in a youth policy dialogue towards a comprehensive approach to mental health with
Commissioner Stella Kyriakides, in Brussels.

Nicki and Mariana shared their personal stories and highlight the struggles faced by young people living
with and beyond cancer, talking about loneliness, isolation, health anxiety, concerns about returning to
work, changes to family dynamics, and more, all the while emphasizing the need for free and specialized
mental health services for all young adults with cancer, before and after treatment.

Speaking at the event, Mariana shared her last year’s personal experience of loneliness and isolation
during cancer treatment, pointing out the absurdity of patients having to pay for mental health services
that should be free.

“I tried to seek the help of a psycho-oncologist in a public hospital, but I would have needed to wait for
several months, so I ended up paying out of pocket for private appointments”, stated Mariana.

She called on the European Commission “to improve access to mental health services, through funds
allocations and more innovative services” that would enable cancer patients and survivors across the EU
to receive appropriate and free mental health care.

From left to right in the picture, Nicola Unterecker and Mariana Coutinho.

“The fear of reoccurrence, depression, PTSD, isolation, body image issues due to changes caused by medications, loss and grief are daily struggles for many cancer fighters and survivors, including me. There are so many burdens on us already. Finding mental health support and being able to afford it should not be an additional one” said Nicola in her powerful intervention.

Nicola Unterecker and EU Health Commissioner Stella Kyriakides

Ana Amăriuței, patient advocate at Youth Cancer Europe and Biomedical Science PhD student at University of Sheffield, originally from Romania, shared her own story of childhood cancer in a high-level event hosted by European Commission’s Stella Kyriakides and Acko Ankarberg Johansson, Swedish Minister of Health Care.

(Stockholm, Sweden) 1st of February 2023 – In the run up to World Cancer Day 2023 the European Commission and the Swedish Presidency of the Council of the European Union co-organised a high-level conference on cancer. The conference took place under the title “Equity, excellence, and innovation – modern cancer care for all, Europe’s Beating Cancer Plan – eradicating inequalities within cancer care”

Following keynote speeches from Acko Ankarberg Johansson, Swedish Minister of Health Care, EU Commissioner Stella Kyriakides, Dr. Hans Kluge, WHO Regional Director Europe, Dr. Douglas R Lowy, Principal Deputy Director, National Cancer Institute and Spanish Minister of Health, Carolina Darias San Sebastián, Ana Amăriuței delivered a powerful and emotional speech, addressing topics such as Equity, Diversity, and Inclusion and spoke about EUCAYASNET, the first-time-ever EU funded project, coordinated and managed by young people with lived experience of cancer.

Ana called on the Swedish Presidency of the Council of the European Union and the European Commission “to provide a sense of unity and security by ensuring appropriate access to medical care to every single cancer patient in Europe regardless of their gender, race, socioeconomic status, sexual orientation, place of birth and residency, religious or spiritual beliefs” as all stakeholders work towards eradicating inequalities in cancer care.

Speaking at the event, Ana said: “We owe these changes to our loved ones and the cancer patients who are no longer with us and for whom we were too late to make a transformation, but most of all, to all those 2.7 million Europeans who are diagnosed each year with cancer”.

In addition to presenting the latest deliverables under the EU Cancer Plan, participants at the conference discussed three main topics: prevention, early detection, and the conditions for data-driven cancer care.

From left to right in the picture: Stella Kyriakides EU Health Commissioner, Ana Amăriuței, Biomedical research PhD student and YCE patient advocate, Mia Rajalin, Vision Zero Cancer and Lung Cancer Association, Acko Ankarberg Johansson, Swedish Minister for Health Care and Carolina Darias San Sebastián, Spanish Minister of Health.

Check out the highlights from our recent event at the European Parliament in Brussels to present our white paper and to tackle the first of five key issues addressed in it, the “Right To Be Forgotten” for cancer survivors.

Our event is already creating ripples across Europe. We were invited to the BBC to talk about the issue of financial discrimination against cancer survivors, which was also echoed by The Independent and the Daily Mirror newspaper. As a result, UK MPs and the ABI (Association of British Insurers) are already taking part in the conversation.

This is only the beginning of a long road ahead as we engage with institutions and stakeholders across Europe to create a brighter future for young people living with cancer.

“Today we are launching our white paper where we address five very particular issues and where we issue five calls to action. It’s not enough that we talk about cancer generally and it’s not enough that we talk about the patient experience generally. It’s very important that issues that are relevant for youth are talked about.”

Katie Rizvi, Co-Founder and CEO, YCE

“This event is really important because we need to increase awareness and to sensitise various stakeholders about the main issue of discrimination and cancer survivorship. There are more and more survivors, they are young and they have a whole life ahead of them, so it’s really important to involve the youth.”

Françoise Meunier, Director Special Projects, EORTC

“It’s really wonderful seeing our hard work come to fruition and it’s unbelievable that we are actually here in the European Parliament talking about youth cancer rights. Youth Cancer Europe are enabling us, young people, to change the lives of other young people across Europe. We are the only ones who understand what it’s like to go trough these services. So, ultimately, we should be the ones deciding on what happens to them for future generations.”

Bradley Gudger, YCE Ambassador

“We bring a different perspective. For us, it is not a short-term indication, a short-term experience; cancer stays with us for life. Then there are impairments that we are facing for life and some of them we should not face. Today we have shown that we will do what is necessary to address key stakeholders and policy makers to ensure that those who live with cancer are no longer abandoned by their institutions and facing harsher discrimination than convicted criminals. France has already lead the way in showing that this can be done with supportive legislation, and we will continue to push until this becomes a reality for everyone in Europe.”

Šarūnas Narbutas, Co-Founder and Chairman, YCE

“I didn’t know how great of an impact it could have financially, in mortgage, in insurance and then applying for a job. That is unfair discrimination which we need to stop in Europe.”

Sirpa Pietikäinen, MEP

“It is clear that for young people the situation is even harder because they are at the beginning of their life, they have passed through difficult treatments and then, they are facing many other barriers.”

Cristian-Silviu Buşoi, MEP

“There is a desire to bring insurance as quickly as possible to people, and often that means we move away from very exact risk assessment. Which is unfortunate, because that usually has a sort of negative outcome for those with a history of cancer. And I think that reminder is always worth giving to the companies who are perhaps overly focused on the cost, but not on the consumer. There is an awful lot of desire to bring about change. The passion showed today, as already said, was more likely to come from Youth Cancer Europe than perhaps some of the other patient bodies.”

John Turner, Head of Life & Health Underwriting, Continental Europe, Swiss Re

A special thank you goes out to our sponsors for helping make the event possible.

We spoke to Martynas and Aurimas from Lithuania’s Junior Doctors’ Association about the need for young cancer patients and survivors to be part of the discussion that shapes medical care for current and future generations. Watch their interview here

“We’ve seen through the enthusiastic faces in the room, through the outcomes that we managed to achieve in 8 hours with no structure but with everyone bringing up similar topics, sharing the similar visions that there are so many things that we can do jointly.”

Sarunas Narbutas – Lithuania

  • Advisor to the President of the Republic of Lithuania
  • Lecturer on EU and International Law at Vilnius University
  • PhD Candidate (Networked Governance)
  • President of the Lithuanian Cancer Patient Society
  • Cancer survivor

“I believe meetings like this are important because it helps us get together with survivors from other countries and we can find out what issues other people face and what would be the solution on a European level.”

Floin Barnea – Romania

  • Business owner and lead designer of Digital Etiquette
  • Student at the Faculty of Philosophy and Political Sciences, Iasi
  • Cancer survivor

“I think it’s very helpful to bring people together from across Europe to try and discuss the issues they are facing with cancer despite the differences we face in funding and medical care. And I think this really has helped and we have something we can hopefully build on.”

Mathew J. Cooke – United Kingdom

  • Phd Candidate (Politics), University of Cambridge
  • Member, NHS England’s Teenage and Young People Cancer Clinical Reference Group
  • Member, NCRI Teenage and Young Adult Clinical Studies Group
  • Cancer survivor

“Being in different groups through the meeting, I managed to talk with almost all the participants from the conference and this way we were able to see the problems that are around the whole of Europe Recommended Site. ”

Ana Amariutei – Romania

  • 12th grade student at Emil Racovita National College, Iasi
  • Patient support Volunteer with Little People Romania at the Sf. Maria Children’s
  • Emergency Hospital, Iasi
  • Cancer survivor

“I liked the fact that it was an open space summit and we had freedom to speak, freedom to what meeting we wanted. We could also raise our own issues and it was a very good way to get people together.”

Floin Barnea – Romania

  • Business owner and lead designer of Digital Etiquette
  • Student at the Faculty of Philosophy and Political Sciences, Iasi
  • Cancer survivor

“Probably the most intriguing thing about this meeting was that it was an open summit, I never joined or participated in that king of meetings ever, so that was pretty impressive.”

Tomaz Dezelak – Slovenia

  • History and Theology Student at the University of Ljubljana
  • Author, The Other Me
  • Cancer survivor

“All the ideas were flowing, everybody was talking, everybody was discussing their own problems and their own issues and everybody was giving an opinion so it was a very productive day.”

Emanuel Schipor – Romania

  • Student at the Faculty of Psychology and Educational Sciences, Cluj-Napoca
  • Patient Support Volunteer
  • Assistant to Little People hospital psychologist, Institute of Oncology in Cluj-Napoca
  • Cancer survivor

“I was very impressed by the level of knowledge and the ability to communicate it in a second language to most people. I couldn’t have done that in a foreign language, so I was very much blown away by that. But also the enthusiasm and the engagement everyone had throughout the day, despite the fact we all had very little sleep and too little coffee.”

Mathew J. Cooke – United Kingdom

  • Phd Candidate (Politics), University of Cambridge
  • Member, NHS England’s Teenage and Young People Cancer Clinical Reference Group
  • Member, NCRI Teenage and Young Adult Clinical Studies Group
  • Cancer survivor

“My first reaction was not knowing what exactly was going to happen, I was a little bit afraid of the themes that were going to come up, what everybody is going to talk about, if they were really going to answer to my questions, what I was asking myself about, and I was pretty impressed to see that many people had the same questions as I had. Same themes came up that I was interested in and I was pretty impressed, I really liked it and I think it was really worthwhile coming.”

Francisco Mateos – Spain

  • Cofounder and board member of AAA – Asocoacion Espanola de Adolescentes y
  • Adultos jovenes con cancer
  • Volunteer Coordinator
  • Bachelor in Philosophy and student of Pedagogy
  • Cancer survivor

“I’m excited! For me it was a great experience, I’m grateful for being here, for being invited first of all and for being here amongst all of you, very proud for that.”

George Seremetakis – Greece

  • Double major graduate in Computer Science and Football Coaching
  • Vice-President of Kyttaro, Greek Organization of Adult Cancer Survivors
  • Cancer survivor

“I’m excited! For me it was a great experience, I’m grateful for being here, for being invited first of all and for being here amongst all of you, very proud for that.”

Mathew J. Cooke – United Kingdom

  • Phd Candidate (Politics), University of Cambridge
  • Member, NHS England’s Teenage and Young People Cancer Clinical Reference Group
  • Member, NCRI Teenage and Young Adult Clinical Studies Group
  • Cancer survivor

“I am very confident that young people can contribute on a professional level, speak with the same voice that health politicians want to hear and speak with the same competence and dignity [of] that [of] the health professionals, but in doing so there remains their own personal touch with the disease. One example [is] me living with cancer for eight years now and taking pills every day, I see that through young patients’ voice you can make a big change. It should not be localized or nationalized, it is the time for it to go global. Let’s start from something and Youth Cancer Europe is a very a timely initiative that I believe will tackle a lot of imminent needs and I believe it will attract a lot of support.”

Sarunas Narbutas – Lithuania

  • Advisor to the President of the Republic of Lithuania,
  • Lecturer on EU and International Law at Vilnius University,
  • PhD Candidate (Networked Governance),
  • President of the Lithuanian Cancer Patient Society,
  • Cancer survivor

“[Institutions] like medical and pharma are in need of an organization that connect all of the other NGOs all around Europe, not only Western Europe but also Eastern Europe, and not only NGOs but also connect patients with clinical trials, with other doctors from other countries and connect doctors between them. And I think that what I see as being done is exactly what [is needed] on the European level right now.”

Emanuel Schipor – Romania

  • Student at the Faculty of Psychology and Educational Sciences, Cluj-Napoca
  • Patient Support Volunteer
  • Assistant to Little People hospital psychologist, Institute of Oncology in Cluj-Napoca
  • Cancer survivor

“Not only do we need to empower survivors to look after themselves better, but we also need their help. As a medical research community we need the survivors to tell us what are the important questions that we need to be doing research on in the future.”

Kathy Pritchard-Jones, MBCh, Ph.d.MD – United Kingdom

  • Professor of Paediatric Oncology University College London
  • Institute of Child Health
  • Steering Committee member of ENCCA (European Network Cancer research in Children and Adolescents)

“I think survivors also should be able to express their voice and be part of the decision making process.”

Florin Barnea – Romania

  • Business owner and lead designer of Digital Etiquette
  • Student at the Faculty of Philosophy and Political Sciences, Iasi
  • Cancer survivor

“I think that the idea is very much welcome and I hope that we will be able to collaborate together and go for it strategically”

Dr. Riccardo Haupt, MD – Italy

  • Head of Epidemiology and Biostatistics Hematology and Olcology Institute Giannina Gaslini Genova, Italy
  • Founding member of PanCare

“I think that anything that gets young people with this experience to connect and share experiences and learn from each other is a good thing.”

Lars Hjorth, M.D lose belly fat fast. Ph.D. – Denmark

  • Consultant Paediatric Oncology and Hematology Department of Paediatrics, Skane University Hospital
  • Chairperson PanCare
  • Coordinator PanCareSurfUp

“It’s extremely important that all adults who went through cancer when they were young, get together, share, explain, help the new ones and help us.”

Gilles Vassal M.D. Ph.D. – France

  • Professor of Oncology in University Paris-Sud
  • Head of Clinical Research at Gustave Roussy Institute
  • President of SIOPE (European Society of Pediatric Oncolgy)
  • Founder of ENCCA (European Network Cancer research in Children and Adolescents) and ITTC

“I definitely think that a united voice is much stronger and at the very least it shows that young people are not facing these issues alone”

Mathew J. Cooke – United Kingdom

  • Phd Candidate (Politics), University of Cambridge
  • Member, NHS England’s Teenage and Young People Cancer Clinical Reference Group
  • Member, NCRI Teenage and Young Adult Clinical Studies Group
  • Cancer survivor

“Here it does not matter who you are, it matters what you’ve been through, and it matters that you are willing to share and that you stand on equal grounds with the rest of the participants. So yes, I definitely believe that Youth Cancer Europe is the perfect forum for young people with cancer to develop their full potential.”

Karina Kopriva – Romania

  • Political Science Graduate, BBU, Cluj-Napoca
  • Consultant on external affairs, Little People Romania and Republic of Moldova

The young cancer survivors often suffer from depression and have a hard time finding their place in society. The first study made in Romania on the needs of the people in this category reflects this situation. Over 200 young people participated in Cluj-Napoca at the first national seminar on long-term effects of cancer.

The attention and fertility issues or the fear of relapse were some of the topics discussed at the meeting of cancer survivors and medical specialists.

Emanuel Schip, survivor: “It is good to know what’s going to happen next, so you can prepare yourself.

Theodore Urziceanu, survivor: “The experiences of those who went through something like this could prove to be very useful.

The young people who attended also helped by participating in a study whereby the specialists could better understand the profile and needs of someone who survived cancer.

Katie Rizvi, founder of the Little People Romania: “It is a study that has never been done before. The most important thing the young people are concerned about is their fertility and the possibility of having children after cancer treatment.

The results also show that 20 percent of those who defeated the disease still suffer from chronic pain and experience difficulties in learning, while nearly 60 percent experience emotional difficulties and some of them even depression. 19 percent of those aged over 18 do not work and do not study and 16 percent face discrimination in the workplace.

Rodica Cosnarovici, Head of Pediatric Oncology Department in the Cluj Oncology Institute: “I think the most common problems that they face are psychological and reintegration problems“.

The doctors suggested that the Ministry of Health could also come to their aid, by developing a national pediatric oncology program at a national level.

Gheorghe Popa, pediatric oncologist: “Financing oncology programs for adults does not fully meet the children’s needs, as child cancer patients have special needs.

 

Originally published on 12th Dec 2015 via http://www.digi24.ro/Stiri/Digi24/Lejer/Sanatate/Supravietuitorii+cancerului+isi+cauta+locul+in+societate