For many people living with neuroendocrine cancer, the journey to diagnosis can be long, complex and filled with uncertainty. Symptoms are often difficult to recognise, may be attributed to other conditions, or can be overlooked before the correct diagnosis is finally reached.
Over the past two decades, Neuroendocrine Cancer UK has worked alongside patients, families and healthcare professionals to raise awareness of neuroendocrine cancer and improve support, education, advocacy and research. Through our previous patient-led research, we identified significant challenges experienced by many people during the diagnostic process, including delays in diagnosis, repeated healthcare appointments, misdiagnosis and unmet support needs.
While there have been many positive developments in cancer care and greater understanding of neuroendocrine cancers, we continue to hear from members of our community that these challenges remain a reality for many patients today.
New Survey Launches to Explore Diagnostic Experiences
To better understand current experiences and identify opportunities for improvement, Neuroendocrine Cancer UK is launching a new survey focused on the diagnostic journey of people living with neuroendocrine cancer.
We want to hear directly from patients about their experiences from the first signs and symptoms through to receiving a diagnosis. By gathering these insights, we can build a clearer picture of what has improved, where barriers still exist, and what changes are needed to support earlier diagnosis and better patient experiences.
The survey will explore:
- Experiences from first symptoms through to diagnosis
- Delays, misdiagnosis and barriers encountered along the way
- The impact of the diagnostic journey on wellbeing, family life and daily activities
- Whether patients felt informed, supported and listened to throughout the process
- What healthcare services could do differently to improve earlier diagnosis
- Unmet needs experienced during the diagnostic journey
Why Your Voice Matters
Every person’s experience provides valuable insight into the realities of living with neuroendocrine cancer.
By participating in this survey, you will help Neuroendocrine Cancer UK better understand the challenges patients face today and identify areas where greater awareness, education and support are needed. The findings will be used to inform future advocacy work, support services, research initiatives, healthcare education and policy development.
All responses will be anonymous, ensuring that participants can share their experiences openly and honestly.
Who Can Take Part?
The survey is open to anyone aged 18 years or over who has been diagnosed with a neuroendocrine cancer, including:
- Neuroendocrine tumours (NETs)
- Neuroendocrine carcinomas (NECs)
- Pulmonary (lung) carcinoids & Lung NECs
- Pheochromocytoma
- Paraganglioma
- Medullary thyroid carcinoma
- Merkel cell carcinoma
- Other neuroendocrine neoplasms, including MiNEN
Whether you were diagnosed recently or many years ago, we would like to hear from you. Your diagnosis may have been reached quickly, or it may have followed months or years of uncertainty.
Whatever your experience, your perspective is important.
Every Diagnosis Journey Matters
Understanding the diagnostic experiences of people affected by neuroendocrine cancer is essential if we are to continue driving improvements in awareness, earlier diagnosis and patient support.
By sharing your story, you can help us understand:
- What has changed over time
- What challenges still exist
- What support patients need during diagnosis
- How healthcare services can better support future patients
Together, we can help ensure that future patients receive earlier diagnosis, improved support and better care.
Thank you for taking the time to share your experience and support our ongoing work to improve outcomes for everyone affected by neuroendocrine cancer.
You can take part in the survey by clicking the link provided here:
https://www.smartsurvey.co.uk/s/NCUKRWD2026/
THANK YOU