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Cancer & Fertility – A Youth Cancer Europe Advocacy Project

Posted on by Katie
Cancer & Fertility preservation advocacy project

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 programs should become an integral part of cancer rehabilitation for young people and they should be actively included in the development of any novel guidelines;
    • young people’s mental health and quality of life may be compromised by 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:

Finding out about late complications

Posted on by Shajjad Rizvi

Finding Out About Late Complications

Erik is a young cancer survivor from Sweden. Like many other survivors, he has faced the difficulty of late effects as a result of his cancer treatment. While this is a very common issue for a large number of survivors, it is still a taboo subject that patients are often not informed about correctly. As a result, many survivors are then caught off guard with these, often years after their cancer treatment has been completed.

For Erik in particular, this has also meant having to deal with mental health issues such as depression and anxiety, which are only exacerbated by the confusion and lack of information surrounding late effects.

Today, Erik is a strong advocate for Youth Cancer Europe’s cause, actively participating in meetings and workshop both across the continent and in his native Sweden. In this piece, you can read more about Erik’s fight with late effects and dealing with mental health as a cancer survivor. You can read more about his story in his personal blog here (in English and Swedish): https://www.livetefterbarncancer.se/en/erik-sturesson-cancer/

Getting over my cancer treatment with group therapy

Last year in Stockholm, I attended the second session of group therapy organized by the Swedish Childhood Cancer Foundation and its project, Maxa Livet. We’re part of a pilot project and we’re a reference group. Some members are here just because we need enough people to actually have group therapy, which I’m grateful for, seeing how others, like me, are here because we need it.

I have tried regular therapy before, but it wasn’t for me. I didn’t like the idea of group therapy either; I was a very closed person, I didn’t want to share these things with a group of strangers like that. I didn’t even post images on Facebook before 2017 – essentially the only posts I’ve made have been when someone had a birthday. Regular therapy didn’t work either; I always felt like they didn’t understand the issues I was dealing with. I mostly got the “be happy you’re alive” response.

Consequently, I never managed to get over my chemotherapy treatment mentally, and every time I’ve been fatigued since my treatment, it’s been following the same pattern. I’m active, almost like normal, then I get more and more tired, I become inactive, I get anxiety attacks because I feel trapped in my own body, and then I become depressed. My latest depression was unlike any of the others though, due to its cause. In my opinion, due in large part to being a physician’s pharmaceutical error.

Yet, in many ways, this depression could be one of the best things that has happened to me. It was the price I paid to see how bad the support survivors receive in Sweden is. It made me realize that although I’ve been surrounded by a lot doctors with a very wide variety of disciplines, they never told me the truth, mostly because they didn’t know the truth themselves. Either way, I never got the information or help I needed, and which I didn’t realise actually existed.

The revelation of learning about “late side effects”

I’ve always known that I got all these side complications from the chemotherapy or from cancer itself; it was the only logical reason. But as I’ve said before, there’s nothing in the media, anywhere, about this, let alone any information on how common it is. Not a single physician ever mentioned late side effects, not even my adult oncologist. Fine, I knew the cause of my issues. It’s pretty simple: all I’d do is look at my life prior to and after cancer. Before cancer I was athletic, used zero drugs, including alcohol. Would I take 14 different substances every day today without the cancer? No. However, simply knowing the term “late complications” put things into perspective. It made me realize I’m not alone or in the minority. Why then, has the system been so terribly bad when it comes to our treatment? Because it’s taboo, that’s why.

I was always a special case; eventually I got used to this sort of reasoning from my doctors. My endocrinologist had me do tests so rare that they only did them roughly twice a year, meaning the nurse had to read the instructions before performing the test. I got used to it. Then, I got this depression and at the same time, the Swedish medical system started to change, ever so slightly, for survivors. Not for those like me though, who already had vast health issues, a fact that was made abundantly clear in a radio interview I was involved in. One of the participants in this interview was my old child oncologist. He stated outright that these steps being taken now are not for people like me, who are already ill from the chemotherapy treatment. It’s for the next generation of survivors. I know this is something that frustrates him. Sweden have had the knowledge and means to care for us survivors, but chose not to.

I wasn’t just waiting around, doing nothing

I sometimes blame myself for ending up where I am now. I feel that I should have read more about these issues myself. I couldn’t, though. It simply made me depressed to look these things up. Adding to this, every time I saw something, it was always a positive read; they had no issues at all – seemingly. I didn’t bury my head in the sand for ten years, but I trusted that my oncologist would actually help me if she could, or send me to someone else who could. I mean, it’s Swedish healthcare. It’s supposed to be great. She didn’t however, because it wasn’t in her job description up until that point, in 2016/17. That is what she said when I confronted her, regarding why it had taken so long.

Nevertheless, at least I know the facts now. Without this depression, I would have never started to blog, never gotten in contact with the Maxa Livet-project, never gone to Lithuania for Youth Cancer Europe. I would be studying or working, until I got my next fatigue-episode and crashed. Now, I’m trying to adapt, to learn more about fatigue, what I can and can’t do.

Yet, it seems cruel that all survivors in a similar situation such as mine should find out in the manner that I did. I had a very severe depression; I never did hurt myself, but I was suicidal-in-thought for a while. All this happened to me because of ignorance, incompetence and a lack of transparency, lack of awareness.

If only there were some sort of network, with cables around entire nations, or even around the globe, through which journalists could broadcast audio… and if one dare to dream, audio, video and text via special devices that could display and reproduce these sounds. And then, you could have some sort of news on these devices, daily. Where important events and facts could be presented to the audience. As a means of public service. If only that existed…

As for my depression; a forest fire is devastating to the life living there, but afterwards, life is reshaped and flourishes. This is what happened to me. I burnt down to the ground and I’m trying to reshape, re-focus on what’s important. Rising from the ashes, as it were.

I really don’t want other people to suffer from cancer

Posted on by Shajjad Rizvi

“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.