Introduction
For many people living with neuroendocrine cancer, the journey to diagnosis can be long, complex and uncertain.
Symptoms may be difficult to recognise, attributed to other conditions, or dismissed before the correct diagnosis is reached.
Over the past twenty-plus years, Neuroendocrine Cancer UK has worked alongside the neuroendocrine cancer community to improve awareness, support, education and advocacy.
Our earlier patient-led research highlighted significant challenges including delayed diagnosis, multiple healthcare encounters, misdiagnosis and unmet needs.
While much has changed in cancer care, we continue to hear that many of these challenges still exist
This survey aims to understand:
- Your experience from first symptoms through to diagnosis
- Whether you experienced delays, misdiagnosis or barriers to diagnosis
- The impact the diagnostic journey had on your life and wellbeing
- Whether you felt informed, supported and listened to throughout the process
- What healthcare services could do differently to improve earlier diagnosis and patient experience
- What unmet needs people experience during their diagnostic journey
Your responses are anonymous and will be used to improve awareness, education, support services, advocacy, research and policy relating to neuroendocrine cancer.
Who Is This Survey For?
This survey is for anyone aged 18 years or over who has been diagnosed with a neuroendocrine cancer, including:
- Neuroendocrine tumours (NETs)
- Neuroendocrine carcinomas (NECs)
- Pulmonary (lung) carcinoids
- Pheochromocytoma
- Paraganglioma
- Medullary thyroid carcinoma
- Merkel cell carcinoma
- Other neuroendocrine neoplasms e.g. MiNEN, . . .
You may have been diagnosed recently or many years ago.
Your diagnosis may have been reached quickly or only achieved after a long period of uncertainty.
We would like to hear about you.
Every diagnosis journey matters.
By sharing your experience, you can help us better understand
what has changed,
what still needs to improve,
and how we can help future patients receive earlier diagnosis, better support and improved care.
Thank You