Living with Small Cell Lung Cancer in Europe
Fast Diagnosis, Fragmented Support:
Small cell lung cancer (SCLC) accounts for around 15% of lung cancers. It grows quickly and often spreads early, so people need fast answers, clear information and the right support from the very start.
This new report listens to the people who know this best. In March 2026, Lung Cancer Europe ran a pan-European survey, translated into 14 languages and distributed across 20 countries. It heard from 67 people: those living with SCLC, active caregivers and bereaved loved ones. An SCLC Advisory Board of people living with SCLC, caregivers, oncology nurse practitioners and lung cancer advocates then added depth and real-life context to the findings.
The picture that emerges is one of fast diagnosis but fragmented support. Many people were diagnosed quickly. Once diagnosed, though, they and their families often found information, involvement in decisions, access to clinical trials and everyday support hard to find, and inconsistent from one place to the next.
“Overcoming the isolation of a diagnosis of SCLC requires a strong, connected European community where individuals, caregivers, clinicians, and advocates carry the burden together. This report by Lung Cancer Europe provides the evidence and outlines a clear roadmap to deliver that transformation for all patients diagnosed with SCLC.”
We are honoured that the report opens with a foreword by Dr Misty Shields, Thoracic Medical Oncologist and Physician-Scientist, who reflects on the realities of an SCLC diagnosis and what it will take to improve outcomes across Europe.
Key findings
73.1% received a diagnosis within days or weeks of first medical contact, yet 82.1% saw at least two doctors or specialists before diagnosis
62.7% reported extensive-stage disease at diagnosis
60.6% said treatment decisions were made mainly by the doctor, and 20.9% reported no involvement at all
17.9% had taken part in a clinical study or trial
47.8% had used none of the listed forms of support
67.2% selected internet searches as one of the most helpful sources of information, and 23.9% selected AI tools or chat assistants
24.3% of people living with SCLC said stigma or misconceptions had affected their experience
Recommendations
The report sets out clear, practical recommendations for clinicians, policymakers and payers, health systems, the pharmaceutical industry, caregivers and patient organisations. Together, they call for:
support offered from diagnosis onwards
honest, accessible information in people’s own language
earlier conversations about clinical trials
fairer access to treatment across Europe
recognition for caregivers
an end to smoking-related stigma.
We are deeply grateful to everyone who shared their experiences to make this report possible.