The session was introduced by Csaba Dégi, Co-Chair of the European Cancer Organisation’s Survivorship and Quality of Life Network. He announced the launch of the Network’s new report Free from Cancer: Achieving Quality of Life for All Cancer Patients and Survivors, with the aim of helping more cancer patients and survivors achieve a life free from cancer and its impacts.
Andrew Davies, Co-Chair of the Survivorship and Quality of Life Network, said that, with the increase in cancer incidence and improvements in treatment, there are more and more long-term cancer survivors.
Some patients have no issues once they finish treatment but many do, and patients are not prepared for what can happen. Unfortunately, a lack of training and research means there is an ‘iceberg’ phenomenon of physical symptoms in which some patients speak about their issues but many have multiple problems for which they do not seek help.
Longstanding dry mouth, for example, is often dismissed but can have a significant physical and psychological impact. Saliva has many functions and dry mouth affects appetite, taste, chewing and speaking. It also affects mouth hygiene and a lack of it can cause dental problems. Patients may withdraw and no longer eat with their family, and problems can persist throughout their lives.
Not enough attention has been paid to these issues, and a focus on improving and maintaining the quality of life of patients, not just on improving survival, is needed. There also should be investment in specialist services and greater education for healthcare professionals.
Row 1 - Andrew Davies (European Cancer Organisation’s Survivorship and Quality of Life Network); Anja Mehnert (University Medical Center Leipzig); Sarunas Narbutas (Youth Cancer Europe). Row 2 - Csaba Dégi (European Cancer Organisation’s Survivorship and Quality of Life Network); Alexander Zehnder (Sanofi); Dolors Montserrat MEP (European Parliament’s Special Committee on Cancer). Row 3 - Françoise Meunier (Federation of European Academies of Medicine).
Anja Mehnert, Head of Psychosocial Oncology, Department of Medical Psychology and Medical Sociology, University Medical Center Leipzig, said psychosocial and behavioural issues in cancer survivorship are very important for patients, their families and society. The ageing population and increasing urbanisation will only increase these issues further, especially in the context of limited healthcare resources.
Survivorship has been defined as beginning from the moment a patient is diagnosed. While this may not fit with progressive disease, it raises awareness that it should be considered from the beginning of the cancer journey.
Patients ask themselves what will become of their lives, and whether they will survive treatment, or have long term consequences. They experience anxiety, fatigue, depression, demoralisation, loss of meaning and purpose, anger, decreased quality of life, impaired body image, sexual problems, decreased ability to perform daily activities, financial problems and issues around work participation. More than half of patients experience cancer-related distress, which is associated with fatigue, sleep problems and sadness.
It is important to highlight these problems but also provide health education and improve health literacy to empowers survivors, as well as offer effective interventions to decrease stress and improve quality of life.
Alexander Zehnder, Global Head of Oncology at Sanofi, said it is important to go beyond treatments and listen to the cancer community to understand their real needs and offer appropriate solutions. This means collaboration, working with all stakeholders to elevate patients voices and factor their needs and expectations into the medical journey.
This includes examining the challenges faced by elderly cancer patients and how that can influence research, treatment and policy. This is pertinent as the number of people with cancer aged over 70 years will double over the next twenty years.
However, the desire to grow old is the same for all people with cancer, including younger people, who may face work issues and discrimination. Sanofi is collaborating with the EU to further this agenda with societies and stakeholders, and is exploring policy frameworks to quantify the scope of the research needed to improve lives. Through this, real improvements to the quality of life beyond medicines can be achieved to provide the best possible outcomes.
Dolors Montserrat MEP, Member of the European Parliament’s Special Committee on Beating Cancer, said survivorship and families is a key focus of Europe’s Beating Cancer Plan, with emphasis on psychological support across the cancer environment. Yet only half of EU hospitals can offer adequate mental healthcare to cancer patients and survivors.
To better support patients and survivors, disability and dependence assessments should include cancer, and employers should receive help to support survivors and families in a similar way to less able people. Most families experience a substantial increase in costs due to cancer and health systems need to consider the financial impact of cancer care alongside the medical plan to determine the overall risk-benefit ratio.
Patients and families must be at the centre of cancer policies and Europe’s Beating Cancer Plan will be a great opportunity to realise that aim.
Sarunas Narbutas, Chairman of the Youth Cancer Europe, reminded that the audience survivorship issues affect both younger and older patients, with up to 70,000 new cancer diagnoses every year in Europe in individuals aged 15–39 years.
He has been receiving treatment for 14 years and is still not in remission. That affects his entire life but above all his mental health. Yet cancer remains stigmatised among younger people, and they do not know how to broach the subject with each other.
Young cancer survivors face fertility issues, but many countries do not have standards to enable best approaches to the topic of fertility, and often there is a rush to start therapy without explaining its fertility impact. Not being able to have children can lead to anxiety, distress, divorce and suicide.
The European Society for Medical Oncology has produced guidelines on fertility preservation, and lots of advocacy groups raise the issue, but there is a lack of coordination and the guidelines are not reaching patients.
Younger patients also experience isolation and a lack of physical exercise, while treatment changes can cause anxiety. Younger patients do not know if they will graduate and go to university, and their diagnosis has an impact on job interviews. Moreover, they face discrimination throughout their lives in obtaining credit and other financial support.
In the following discussion, Narbutas said survivorship plans are crucial. They should not be a one-off, but every follow-up visit from around the first year after diagnosis should include discussions about plans, so patients can have something to live for.
Kathy Oliver, Vice-Chair of the European Cancer Organisation’s Patient Advisory Committee, agreed, saying plans need to be reviewed regularly, taking into account changing perspectives and the needs of the patient as they go through their journey. Healthcare professionals should ask the patient whether their survivorship plan is still relevant and helpful, or needs reviewing and updating.
Françoise Meunier, Vice President of the Federation of European Academies of Medicine discussed the right for survivors to be forgotten and not have to declare their cancer when accessing financial services. Meunier said progress has been made since the Resolution on Financial Discrimination was passed at the European Cancer Summit in 2018, and the ‘right to be forgotten’ has already been adopted by France, Belgium, and Luxembourg, and is to be adopted in the Netherlands in 2021.
However, there are 14 million cancer survivors and financial toxicity is reality. Those countries have paved the way but it is not fair that other EU citizens do to have access the right to be forgotten. Meunier is now working with the European Cancer Patient Coalition to create a map of the current situation in Europe, with the aim of developing a pan-European legislative framework.
The right to be forgotten is also expected to be introduced into Europe’s Beating Cancer Plan and is a recommendation in the EU Cancer Mission, which is extremely encouraging.