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.
“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.
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.
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.
Youth Cancer Europe will speak at the Economist’s 8th Annual World Cancer Series Europe, to be held in Brussels on 8-9th November 2022. More than 90 speakers will explore best-practice solutions to improving care and patient outcomes, aligned with the EU Beating Cancer Plan, identifying strategies to reduce inequities and encourage innovation through treatment and technology.
YCE’s Katie Rizvi will be joining the 8th November 10:25 am -11:05 am CET Panel “The future of European cancer control in a time of crisis”,speaking about our response to queries and requests of Ukrainian patients needing continued cancer therapy outside of the war-torn country. Please see the detailed Agenda here.
YCE members can register to attend free via the link below
We all read the upsetting reports of a new wave of airstrikes and shelling hitting civilian infrastructure, causing massive suffering & loss of life, in spite ofInternational Humanitarian Law prohibiting attacks which may be expected to cause incidental loss or damage to civilians and civilian objects. According to the Office of the United Nations High Commissioner for Human Rights, the number of civilian casualtieshas now surpassed 10,000
Destruction of civilian infrastructure means that millions of Ukrainians have lost their homes and livelihoods, left without access to clean water, electricity or gas and no means of transport or access to medicine and health services.
4 months of war in Ukraine 4 months of YCE’s support to hundreds of Ukrainian cancer patients who fled their country and are now continuing their cancer therapy in 18 European countries.
At YCE’s recent WAR AND CANCER webinarNatalia told us how she was diagnosed with Hodgkin’s lymphoma stage IV right when the war started, but wasn’t able to access medication. She was also in danger of thrombosis because of her lymphoma, told by her doctor that she was going to die either from thrombosis or from cancer. Urgent action was needed. Through the help of Inspiration Family, she was referred to Youth Cancer Europe and was able to get to Warsaw, Poland, to start cancer therapy.
“One week after my 5th round of chemo I feel perfect, full of energy and hope. If anyone asks me if there is life after a cancer diagnosis, I would say yes, but [only] if you have access to medicine.”
With studies suggesting that between 40% and 80% of adult female cancer patients are at risk of becoming infertile and between 30% of male cancer patients may become sterile after treatment for cancer, increased survivorship means that the preservation of fertility is becoming an increasingly important topic for patients [Knapp, Caprice A., Gwendolyn P. Quinn, and Devin Murphy. “Assessing the reproductive concerns of children and adolescents with cancer: challenges and potential solutions.]. It’s also been suggested that fertility impairment might be considered one of the most life-altering late effects of cancer treatment, affecting the survivors’ body image, sexuality, dating relationships, marriage patterns and sense of wellbeing [Levine, Jennifer M., et al. “Fertility and Sexuality.” Paediatric Psycho-Oncology: A Quick Reference on the Psychosocial Dimensions of Cancer Symptom Management (2015).].
However, despite Europe’s ageing population and an increasing consideration for European citizens’ right to build a family, awareness of this issue remains low and discussions linking fertility and cancer are not highly placed on the European Union’s political agenda. Considering the growing momentum in the field of cancer, we wonder why Europe’s Beating Cancer Plan does not reference fertility issues even once.
Following the objectives set out in our White Paper published in 2018, Youth Cancer Europe’s advocacy project focuses on building support & impacting policies through a EU Presidency contact programme, including meetings with the Permanent Representations and specific Members of the European Parliament as well as monitoring on-going legislative files and Council Conclusions/Parliamentary Actions.
After the publishing of the European Commission’s Beating Cancer Plan, we spoke up at the European Parliament’s BECA committee hearing. As a direct result, the Report on strengthening Europe in the fight against cancer – towards a comprehensive and coordinated strategy (2020/2267(INI)) adopted in February 2022 by the European Parliament, for the first time, addressed topics that were completely ignored by the Beating Cancer Plan, such as fertility. In it, the European Parliament “calls on the Commission and the Member States to plan actions that promote, in the context of care and treatment, greater attention to the protection of patients’ fertility, in particular in the case of paediatric and juvenile cancers” & “strongly urges the Member States to ensure that all cancer patients are fully informed about the possibility of fertility preservation procedures prior to the start of active treatment; calls for the development of guidelines at EU level for health professionals, defining the age at which cancer patients should be informed about the availability of reproductive health procedures; encourages, furthermore, the Member States to make provision for all cancer patients covered by compulsory national health insurance to be reimbursed for such services by national health insurance schemes”
Youth Cancer Europe is also participating in three distinct thematic Stakeholder Contact Groups facilitated by the European Commission on Europe’s Beating Cancer Plan:
“Childhood Cancer” thematic group
“Quality of Life” thematic group
“Reducing inequalities” thematic group
In these contact groups YCE provides input to the Commission on the implementation of the Europe’s Beating Cancer Plan and the Horizon Europe Cancer Mission in areas under the remit of the thematic group. These groups will work in synergy with other already existing Commission stakeholder groups and consultation mechanisms.
Our research activities include evidence and gap mapping to assess currently accessible fertility presentation and fertility treatment options and costs across Europe, as well as an online survey and qualitative study to understand the lived experience of young adults with cancer regarding fertility preservation and fertility assistance and cancer survivors’ attitudes on building a family.
In 2022 YCE launched a Survey on Awareness and Accessibility to Fertility Preservation Procedures in Europe, to better understand young people’s awareness on fertility preservation and its relationship to quality of life and mental health. The respondents were over 600 cancer patients and survivors, aged 15 to 39 at diagnosis, recruited across a wide European region.
The study reveals that about 28 % cancer patients did not discuss medical options for fertility preservation with their healthcare provider, with the Eastern European Countries reporting the lowest rates of involvement in fertility discussions. Furthermore, respondents who were not informed about available fertility services reported the lowest quality of life, fertility-related concerns greatly impacting their level of anxiety and depression.
Based on our findings we can conclude the following:
within Europe, there are significant cancer-related fertility inequalities between countries and healthcare systems;
accessible fertility preservation programsshould become an integral part of cancer rehabilitationfor young people and they should be actively included in the development of any novel guidelines;
young people’s mental health and quality oflife may be compromisedby fertility-related distress and should be monitored throughout the cancer continuum.
Read more about the online survey methodology here.
As part of Youth Cancer Europe’s advocacy work, we joined the world’s largest international community of cancer experts at the Union for International Cancer Control (UICC) World Cancer Congress (WCC 2022) in Geneva, where YCE was invited to host a round table. In the session we discussed findings and clinical implications from the results of a pan-European survey of young people and presented novel evidence on FP access and awareness. Using a holistic and cross-sectoral approach, together with a group of experts, the session provided pragmatic, evidence-based, acceptable and scalable solutions to reduce cancer-related fertility inequalities among young people. Round table panellists included Dr. Richard Anderson Professor of Clinical Reproductive Science, University of Edinburgh; Max Williamson medical student at University of Oxford, BSc in Biomedical Sciences at UCL, patient advocate and representative for the NCRI Teenage and Young Adult/ Germ Cell Tumour Research Group; Katie Rizvi founder of Youth Cancer Europe; Dr Anja Borgmann-Staudt professor and medical doctor. The session was chaired by Dr Urška Košir, scientific advisor and advocate with Youth Cancer Europe, lecturer at the University of Oxford. YCE’s recorded session for the WCC 2022 can be watched in full above. 👆
Next up, in November, YCE’s Urška Košir will represent us at the ECO Summit 2022 in Brussels, speaking on fertility preservation and quality of life among adolescent and young adult cancer patients across Europe.
Fertility impairment prevention, fertility preservation and fertility treatment (including assisted reproduction) continue to be very high on YCE’s agenda and are topics YCE represents in many European and international networks and consortiums, such as ENTYAC and EU-funded projects StrongAYA and EU-CAYAS-NET
This project would not be possible without the generous support of YCE’s sponsors:
Inspiration Family is a charitable fund to support adult cancer patients in Ukraine.
Directions of the fund’s activity:
Systemic changes in the field of oncology
Emotional and informational support
Education about cancer
Who created the Inspiration Family?
Five ladies who underwent cancer treatment – Anna Uzlova, Daryna Brikaylo, Inessa Matyushenko, Yulia Balan, Mila Reutova.
We separately founded our own public organizations in 2017: Cancel/R, Soul Sisters and Kvant. We did small projects to support cancer patients, got acquainted and understood that we all want one thing – systemic changes in the country regarding oncology in Ukraine.
Named the association Inspiration Family, which in September 2020 became a fund to support adult cancer patients.
Support for cancer patients during the war.
We are currently working in the following areas:
We are collecting and providing up-to-date information on the work of oncology centers in Ukraine and the list of services they provide;
We are providing information on the receipt of humanitarian aid to specific oncology centers in Ukraine;
We are collecting information from foreign clinics and coordinate patients to continue treatment;
We are submitting requests for humanitarian aid.
On February 24, 2022, Russia started a war with Ukraine. Despite threats from Russia, we still did not believe that the war would begin. The entire population of Ukraine has landed in a difficult situation and many have been forced to escape from the country, but people with serious illnesses have been hit in the hardest manner. Nowadays, cancer patients need support more than ever, so we continue to work harder and help adult cancer patients in these difficult conditions.
First of all, we are looking for an opportunity to continue the treatment of cancer patients in Ukraine, to provide information about the work of oncology centers and the import of humanitarian aid. However, despite the fact that it is now possible to continue treatment in any oncology center in the country, regardless of the place of registration, not all patients are able to continue treatment in Ukraine due to lack of drugs, limited laboratory work, limited access to diagnostic procedures, radiation and surgery and provision of services.
Only in case we find out that the patient is not able to continue treatment in Ukraine, we recommend him to go abroad to continue treatment.
We are grateful to all countries and foreign clinics that provide assistance to Ukrainian cancer patients! You are saving the lives of our fellow citizens, relatives and friends and our nation will always be grateful to you!
Join us on May 18th for our War and Cancer webinar and listen to first-hand accounts of young people with cancer in Ukraine and what we do to help them. Register via this link Since Russia’s invasion of Ukraine on February 24th, Youth Cancer Europe has organised a coordinated response and helped hundreds of patients to find continued cancer treatment despite the war. With 1 in 3 households home to at least 1 person with a chronic condition and unable to secure medication and care in Ukraine, patient organisations like YCE and our Ukrainian partners, Inspiration Family, have become indispensable in cancer patients’ fight for survival. Join our webinar via Zoom to meet Ukrainian YCE members joining from Kyiv and Lviv. You will also hear from cancer patients who have crossed the border and now receive cancer therapy in other European countries, and meet our volunteers and the people on the ground who are supporting the coordination of this massive effort. You must register via this link to participate. Look forward to seeing you there!
ВІЙНА І РАК
Вебінар Youth Cancer Europe
Приєднуйтесь до нас 18 травня на нашому вебінарі «Війна та рак» та послухайте з перших вуст про онкохворих людей в Україні, а також про те, що ми робимо, щоб їм допомогти. Реєстрація через посилання. Після вторгнення Росії в Україну 24 лютого Youth Cancer Europe організувала скоординовану відповідь і допомогла сотням пацієнтів знайти варіанти продовжити лікування раку, незважаючи на війну. Оскільки щонайменше в третині сімей проживає принаймні одна людина з хронічним захворюванням, яка не може отримати ліки та допомогу в Україні, такі організації, як YCE та наші українські партнери Inspiration Family, стали незамінними помічниками в боротьбі онкохворих людей за виживання. Приєднуйтесь до нашого вебінару через Zoom, щоб познайомитися з українськими членами YCE, які приєднуються з Києва та Львова. Ви також познайомитеся з хворими на рак, які перетнули кордон і тепер отримують лікування раку в інших європейських країнах, а також із нашими волонтерами та людьми на місцях, які підтримують координацію цих масштабних зусиль. Вебінар проходитиме англійською мовою. Для участі необхідно зареєструватися за посилання. Чекаємо на вас там!
Huge congratulations to our winners! We look forward to welcoming our survivors Magdalena (Poland), Jarly (UK), Bojan (Macedonia), Andrea (Spain) and Radu (Romania) and their guests to Cluj-Napoca this August for UNTOLD Festival! Thanks again to the promoters, and if you weren’t lucky this time keep an eye out for future opportunities. More to come soon!
My name is Dragos-Cristian Finaru, I’m 30 years old and come from Bacau County which is in Romania. I was diagnosed with Hodgkin lymphoma and finished treatment when I was 20 years old.
What do you recall from your cancer treatment, can you share any thoughts and feelings, even fears you had at the time? and what helped you during treatment?
First of all, I remember that I did not know what cancer meant – Not at all! All I knew was that if you’re diagnosed like this, with cancer, you have no chance of surviving. Perhaps this was one of the reasons why my parents did not tell me the diagnosis when they found out.
The first thing that I remember is that I had swollen lymph nodes in my neck. This started to make my colleagues look at me strangely, avoid me and distance themselves from me.
My body did not react very well to treatment, but it was something that had to be done. My veins burned, my hair fell off and my skin began to decay, sadly girls started to keep their distance. I was asked on the basketball field if I had AIDS and if I will die, and during the classes at university they asked me if I was not ashamed to stay on the same bench next to them.
However, I believe this experience opened my eyes in many ways.
In the oncology section, I remember my father standing beside my bed, praying and crying. I realized that the decisions I make are not only, “It’s my life and I’m doing what I want with it.” Everything that happens to me will also influence the lives of those around me, be they family or friends, or maybe only the people I will help in the future. I need to be more careful with my choices. If I will wear a seat belt, if I did not drink that extra glass of alcohol, if I will wear safety glasses, if ………
Of course, this was not the case here, but it is not about the examples, it is about what we do with our lives has a direct impact on others. And it’s a shame that we often only realise this when dramatic events take place.
You also realize that cancer can take away many of the things you care about, it can take the basketball ball from your hands, your free time, your hair! But there is one thing it cannot take away from you, it cannot take away the love of others for you.
There is that feeling when you hear the diagnosis for the first time, and you realise that it is true, it’s not a prank or a mistake, I really do have cancer! I asked myself, “Why me?” From all the people on the planet, why me? The strange thing is, I asked myself the same question when I received the news that the treatment was successful and I survived! I couldn’t help but ask again, “why me?”
I strongly believe that we should all ask ourselves this question more often, no matter who we are, a father, a sales person or a patient. Why should I be a role-model-father, why should I reach and overcome my obstacles, why should I be the one who walks out the oncology ward. We should try everything within our power to achieve being the best we can and to overcome the things that hold us back.
Otherwise, we will just complain about fate, no matter the context, the job or the situation.
What are you doing now with your life?
I studied biochemistry and psychology, and now I’m working at a learning and development company in Romania. I’m involved in all the projects and initiatives for learning and education I can find, from TEDx to the The Duke of Edinburgh’s International Award program, projects involving young orphans to sick people and people from disadvantaged backgrounds.
You are involved in many youth incentives, can you share a little about this?
I believe that education is a silver bullet. Education is everything. Education as humans based on experiences made inside and outside the classroom, not only involving “grades”. Because the challenges we face as humans are more complex than ever. And now more than ever we need people to be willing to help and face the new challenges addressing this generation. Young people are the future, “the day after tomorrow” and they should be our most important strategic objective. Or, at least, this is my perspective, don’t know if I could do or be involved in something else 😊
I have been involved in the Duke of Edinburgh Award program in Romania since 2014, I started by becoming a leader and overseeing young people doing the Award program within my community. Later I became an International trainer and I train people to become leaders, mainly school teachers on how to provide the program to young people, later I became a Unit Coordinator, and also a Supervisor and Assessor of the Adventurous journey aspect of the Award Program. I fell in love with the program – you could say “it was love at first sight”
Any special stories you would like to share about your Duke of Edinburgh award program experience?
There are many stories. Watching the sunrise from a mountaintop, or to understand how important it is to say “I’m proud of you” to a young person can be, and how such a word could shape his or her life.
An interesting story took place last year during the training journey of team doing the gold award from the Duke of Edinburgh Award program. We were in a very arid and isolated area within the Dobrogea Mountains in Romania. We were just doing a final check with the team before starting our journey. We asked a person who just happened to be in the same area as us to take a picture of our team. He was an elderly person who only spoke English. I asked him where he was from and what he was doing for a living. He told me he came from the UK and was a geography teacher.
I asked him if he knew about the Duke of Edinburgh award program, at that moment he started to smile and told us how he was a supervisor within the award program 20 years ago. I told him there was a gold team in front of him, he started to get emotional and tear-up. He started to ask the young people the same things we were checking with them, making sure they had all the information before setting out on the adventurous journey.
The young people doing the award were so impressed that the same values and principles of the Award program are global.
Do you think the Duke of Edinburgh Award program can be used as a tool to help young people who are trying to get back to the routine of life after a cancer a treatment and why?
I don’t think, I know for sure – yes! The Duke of Edinburgh Award program would be a powerful tool to help youth survivors to start hoping and planning getting back to life. You are faced with so many doubts about the future, not-knowing how the treatment will end and what options will be available to you at the end.
The Award program provides direction, activities of personal growth and development, giving and receiving care and attention, experiencing progress and achieving goals, meeting new people and discovering new opportunities. It’s the perfect program to help someone get back on the track of life!
Thank you for taking the time to be interviewed, would you like to add anything else?
Above all, I want to thank Youth Cancer Europe for your time, effort and intentions, all your energy and all your good will. By being one of those who need it, I understand and feel the impact of your work.
You are the living proof of the title “We are the people we’ve been waiting for”. Indeed, we are. It depends on us to realize and to accept it.
“I really don’t want other people to suffer from cancer… no one, even the worst people on Earth do not deserve to suffer from cancer” – Anna from the Republic of Moldova.
Anna was only 15 when she was diagnosed with cancer. Doctors told her parents that she wouldn’t live more than 2 weeks, but that was 10 years ago… Today, Anna’s fight continues as she faces the after effects from the disease, something that patients are too often not informed correctly or enough about. Early supportive care can prevent the late onset of harsh side effects that have a huge impact on the quality of life of survivors, even ten or more years after chemotherapy or radiation treatment. Find out more about Anna’s powerful story in this video.