Supporting the

Neuroendocrine Cancer Community

Delays and Routes to Diagnosis of Neuroendocrine Tumours

Nov 21, 2018

Basuroy R1, Bouvier C2, Ramage JK3, Sissons M2, Srirajaskanthan R4,5.

Author information

1 Department of Liver Sciences, Division of Transplantation Immunology & Mucosal Biology, King’s College London, London, UK.
2 Neuroendocrine Tumour Patient Foundation, Leamington Spa, UK.
3 ENETS Centre of Excellence, Neuroendocrine Tumour Unit, Kings College Hospital, London, UK.
4 ENETS Centre of Excellence, Neuroendocrine Tumour Unit, Kings College Hospital, London, UK. 
5 Department of Gastroenterology, Kings College Hospital, London, SE5 9RS, UK. 



Neuroendocrine tumours are uncommon tumours; there is often a long period between the onset of symptoms and diagnosis. This study aims to address the symptoms prior to diagnosis of people with known neuroendocrine tumours and also the involvement of healthcare providers prior to the diagnosis.


A web based survey was designed to cover two broad areas of patient symptoms and healthcare interactions prior to diagnosis. This was tested and adapted by patient and clinician input prior to distribution via Survey Monkey.


The results demonstrated a median time from first symptom to diagnosis of 53.8 months. The most frequent initial symptoms were of pain, change in bowel habit and fatigue. 31% of respondents noted weight loss prior to diagnosis. 80% of respondents visited their GP regarding the symptoms a median of 11 times. 58% of respondents were referred to secondary care where they were seen a median 3 times. 30% presented acutely to A&E and this led to their diagnosis.


In conclusion, there is a long time from onset of symptoms to diagnosis in all types of NETs. This is despite many respondents having alarm symptoms at diagnosis. Further education and awareness regarding malignancy may help with earlier diagnosis.