Delays and routes to diagnosis of neuroendocrine tumours.

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.

Presenting Symptoms and Delay in Diagnosis of Gastrointestinal and Pancreatic Neuroendocrine Tumours.

The gastrointestinal tract and pancreas are common primary sites for neuroendocrine tumours (NETs). Patients often report a long duration of non-specific symptoms in the year prior to diagnosis. The aims of this study were, firstly, to establish pre-diagnosis patterns of symptoms, and secondly, to determine the time from onset of symptoms to NET diagnosis and understand the interaction with primary and secondary healthcare providers. A survey was designed on a web-based survey platform with the focus on patient symptoms prior to diagnosis and a screen for functional diarrhoea (Rome III criteria [C4]). A total of 303 responses were received. The median duration from the time of first symptoms to diagnosis was 36 months for small bowel NETs and 24 months for pancreatic NETs. Common first symptoms were pain (36%), flushing (24%), and diarrhoea (24%); 29% of small bowel NET respondents were given an initial diagnosis of irritable bowel syndrome. Dyspepsia was the second most common initial incorrect diagnosis. Respondents saw their GP 5 times over a median 18-month period for their symptoms; 31% of patients were diagnosed following unplanned emergency admission. In conclusion, this survey demonstrates a median time to diagnosis of 36 months for patients with small bowel NETs. Incorrect initial diagnosis appears to be very common, with a high number of attendances in primary and secondary care prior to a correct diagnosis being made. An earlier diagnosis may improve patients' quality of life and possible survival.

Neuroendocrine Tumors.

Neuroendocrine tumors are increasingly diagnosed, either incidentally as part of screening processes, or for symptoms, which have commonly been mistaken for other disorders initially. The diagnostic workup to characterize tumor behaviour and prognosis focuses on histologic, anatomic, and functional imaging assessments. Several therapeutic options exist for patients ranging from curative and debulking surgery through to liver-directed therapies and systemic treatments. Multimodal therapies are often required over the patient's disease history. The management paradigm can be complex but should be focused on curative resections and then on controlling symptoms and limiting disease progression. There are several new systemic therapies that have completed phase 3 studies with new compounds being studied in phase 2. Genetic and epigenetic markers may lead to a new era of personalised therapy in the future.

A multimodal approach to the management of neuroendocrine tumour liver metastases.

Neuroendocrine tumours (NETs) are often indolent malignancies that commonly present with metastatic disease in the liver. Surgical, locoregional, and systemic treatment modalities are reviewed. A multidisciplinary approach to patient care is suggested to ensure all therapeutic options explored.