A growing number of people across Europe now live with metastatic cancer for years, often on continuous treatment. Health systems and public policy were not built around them.
On 5 November 2026, the European Cancer Organisation published Closing the Response Gap for People Living with Metastatic Cancer, a Policy Action Report drawn from its Community 365 roundtable in May. The roundtable brought together people with lived experience, clinicians, researchers, industry and policymakers, and was co-chaired by Fatima Cardoso of the ABC Global Alliance and Kathy Oliver of the International Brain Tumour Alliance.
Lung Cancer Europe contributed through our President, Debra Montague, who opened the session on communicating a metastatic diagnosis. Many of the report's recommendations sit squarely within the Lung Cancer Europe Charter 2026-2030, and several echo evidence from our own reports.
How many people are living with metastatic lung cancer in Europe?
Lung cancer is the leading cause of cancer death in Europe, with around 484,000 new diagnoses every year. Most are found late. Only around one in four people in Europe is diagnosed at an early stage, and in many countries half or more of all lung cancers are already stage IV, meaning the cancer has spread to other parts of the body, by the time they are diagnosed.
What happens after that diagnosis is changing. Targeted therapies and immunotherapy mean a growing number of people now live with metastatic lung cancer for years rather than months, particularly where biomarker testing identifies a treatable driver alteration such as EGFR, ALK or ROS1. The ECO report is explicit that metastatic and advanced cancer should not be read as meaning death and dying.
Those gains do not reach everyone equally. The Lung Cancer Europe Charter commits to access to state-of-the-art diagnostics, including biomarker testing, and to equitable access to diagnostics, treatment and supportive care regardless of geography or ability to pay. Without both, progress in metastatic lung cancer depends on where someone lives.
The data gap
The report opens with a stark point from Billy Kelleher MEP: Europe's cancer registries still do not systematically record metastasis or recurrence. Policymakers cannot plan services for a population they cannot count.
Commitment 3 of our Charter calls for high-quality, real-world data to improve care, including data on stage at diagnosis, treatment and relapse. Closing this gap is the foundation for almost everything else in the report.
Brain metastases in lung cancer
Lung cancer is the most common origin of brain metastases. A 2023 meta-analysis in the Journal of Thoracic Oncology found that around 29% of people with advanced or metastatic non-small cell lung cancer had brain metastases at diagnosis, rising to around 35% among people with ALK-positive disease. Each year, around one in six people with EGFR or ALK alterations develop new brain metastases. The authors concluded that this supports brain imaging at staging and follow-up, and the need for targeted treatments that can cross the blood-brain barrier.
The ECO report calls for:
cancer registries to capture the true incidence and prevalence of brain metastases
palliative and supportive care to be offered early, not held back until the end of life
people with progressing or leptomeningeal brain metastases to be included in clinical trials as standard, with any exclusion explained
public and academic funding for brain metastases research, where industry investment has been limited
equal access to specialist radiotherapy such as stereotactic radiosurgery, both between and within countries
standardised trial terminology and endpoints
Trial access is a long-standing concern for Lung Cancer Europe. Our policy briefing on clinical trials highlights that people with rare molecular subtypes may find their nearest relevant trial is in another country, and calls for decentralised trials, a framework for cross-border participation, and financial support for travel, accommodation and caregivers. Our Charter also commits to care from a specialised multidisciplinary team following high-quality international guidelines, and to access to palliative care based on individual need.
Communicating a metastatic diagnosis
Debra Montague, speaking from her own experience of living with ALK-positive lung cancer and brain metastases, described the communication of a metastatic diagnosis as a deeply human moment rather than a clinical conversation.
She pointed out that people recall only 40 to 60% of what they are told after receiving devastating news. A metastatic diagnosis therefore cannot be delivered in a single appointment. It needs to unfold over time, with nurses and pharmacists checking understanding and continuing the conversation, and with carers included as part of the team. Debra described the lack of formal communication training for clinicians as a systems failure.
She called for:
mandatory communication training for all clinicians, using evidence-based approaches such as SPIKES or the Serious Illness Conversation Programme
standardised protocols embedded within Europe's Beating Cancer Plan
training that extends to nurses, pharmacists and the wider multidisciplinary team
accessible resources that support understanding well beyond the day of diagnosis
communication quality measured through patient-reported experience measures, so it becomes a recognised standard of care
These calls now feature among the report's priority recommendations. They reflect Commitments 6 and 7 of our Charter: communication that supports shared decision-making and a clear understanding of care goals, and access to accurate, up-to-date and understandable information about diagnosis, treatment options and prognosis.
Psychological support
The report notes that only 41% of national cancer plans include psycho-oncology. Our 10th and 11th Lung Cancer Europe Reports, the largest survey of its kind on mental health and wellbeing in lung cancer in Europe, reached 2,204 people across 31 countries. Nearly one in three received no mental health support at any point in their care. Commitment 8 of our Charter calls for access to psychological support, palliative care and survivorship services based on individual need.
The language we use
The report also calls for a move away from battle and war metaphors in public and media discussion of cancer, which can leave people with metastatic disease feeling they have failed. Lung Cancer Europe follows the IASLC Language Guide, and Commitment 9 of our Charter calls for stigma and misconceptions around lung cancer to be challenged to reduce isolation and support earlier diagnosis and better care.
Work, money and carers
The third part of the report turns to the social and legal realities of living longer with metastatic cancer. It calls for:
employment rights that rest on enforceable legal entitlements, not employer goodwill
disability definitions that clearly include people living with metastatic or incurable cancer
formal recognition and financial support for informal carers
work participation to be measured routinely as a patient-reported outcome
workplace cultures that support people with metastatic cancer rather than quietly sidelining them
Lung Cancer Europe's research shows why this is urgent. In our survey of 1,161 people across 28 European countries, presented at ESMO 2026, two in three people affected by lung cancer reported financial difficulties. Household income fell for 62.9% of participants, and for almost half of them it fell by more than 30%. Nearly four in ten were unable to work, and 46.7% said caregivers in their country receive no financial support.
We are calling for routine financial toxicity screening, practical and financial support for those most at risk, and expanded income replacement policies for people living with lung cancer and the people who care for them. Commitment 11 of our Charter calls for legal and workplace rights to be protected, including fair access to employment, social support and disability benefits.
Living longer must also mean living better
The ECO report closes on the need for sustained collaboration across cancer types and stakeholder groups. For lung cancer, that work runs through the principle at the centre of our Charter: care should prioritise quality of life, so that living longer also means living better.
Our 12th Lung Cancer Europe Report, Living with Lung Cancer: Quality of life and support needs, will add new European evidence on survivorship when it is published in 2027. Discussion of the ECO recommendations continues at the European Cancer Summit in Brussels and online on 18 and 19 November 2026.
Read the Lung Cancer Europe Charter 2026-2030
Sources
European Cancer Organisation (2026). ECO Policy Action Report: Closing the response gap for people living with metastatic cancers.
Lung Cancer Europe Charter 2026-2030.
Gillespie CS et al (2023). Genomic alterations and the incidence of brain metastases in advanced and metastatic non-small cell lung cancer: a systematic review and meta-analysis. Journal of Thoracic Oncology 18(12):1703-1713.
Narrative review of European rapid diagnostic programmes for lung cancer (2026), PMC13072095.
van Meerbeeck JP et al (2021). Lung cancer screening in Europe: where are we in 2021? Translational Lung Cancer Research.
Lung Cancer Europe (2026). The financial toxicity of lung cancer in Europe: survey findings presented at ESMO.
Lung Cancer Europe (2026). Advocating for more inclusive clinical trials across Europe.