Introduction

The 2025 EGFR Positive UK Members Survey brings together the voices of people affected by EGFR-mutated non-small cell lung cancer from across the UK. It offers an important opportunity to listen, reflect and better understand how care is experienced in practice - from diagnosis through treatment, follow-up and day-to-day living.

A few key findings underscore why these experiences matter.

Key Highlights

Delays in Diagnosis
One in five respondents waited more than three months between their first GP visit and diagnosis, with over a quarter attending three or more GP appointments before lung cancer was identified.
Mental Health and Support:
Over three-quarters of respondents reported significant “scanxiety”, often affecting their ability to function, and many described uncertainty while waiting for results or next steps in care.
Diagnostic waiting times
More than 40% waited longer than four weeks for their EGFR mutation result, despite treatment decisions depending on this information.
Geographic variations
Considerable geographic variation was observed, with reported diagnosis waiting times ranging from 1–2 weeks in some regions to over 10 weeks in others.
Access to Councelling and Support:
Only around half of respondents reported access to counselling services through their hospital, and many were unsure whether such services were available.

Impact and Next Steps

The survey also highlights variation in access to imaging, follow-up practices, psychological support and specialist nursing, as well as the value many people place on peer support and patient-led charities when navigating a complex and life-changing diagnosis.

These brief insights only begin to reflect the depth of the findings. The full report explores these issues in detail, examining patterns across regions, care settings, and disease stages, and sets out evidence-based recommendations informed directly by members’ lived experiences.

We encourage you to read the full report to understand the challenges, variations and opportunities it identifies.

Thank you once again for your continued support and participation. Together, we hope to work towards better outcomes for all EGFR+ lung cancer patients.

Professor Gini Harrison, EGFR+ UK Research Trustee

Read the full report

Please help us share the findings from the 2025 EGFR+ UK Members’ Survey.

This is the largest UK dataset focused specifically on EGFR+ lung cancer. The more visible this data is, the stronger our case for improving diagnosis, biomarker testing and access to proper mental health support.

We’ve created six ready-to-use visuals for you to download and share.
We’ve also included a suggested caption to make it easy.

Thank you for helping amplify the evidence.

Suggested caption:

The 2025 EGFR+ UK Members’ Survey is now live.

EGFR+ lung cancer is a gene-driven form of non–small cell lung cancer that often affects younger people, women and never-smokers.

248 people across the UK shared their experiences of diagnosis, testing, treatment and mental health support.

The findings show:
• Ongoing delays before diagnosis
• Long waits for EGFR mutation results
• High levels of scanxiety and anxiety
• Variation in care depending on where you live

This is the largest UK dataset focused specifically on EGFR+ lung cancer. This evidence underpins EGFR+ UK’s work to improve care and reduce inequalities.

Read the full report on the EGFR+ UK website and help share the findings.