Abstract
BackgroundNeuroendocrine 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.MethodsA 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.ResultsThe 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.ConclusionIn 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.
Highlights
Neuroendocrine tumours are uncommon tumours; there is often a long period between the onset of symptoms and diagnosis
Symptoms leading to diagnosis are varied and dependent in part on the primary site of the tumour and whether the tumours are functional in nature and causing a clinical syndrome such as carcinoid syndrome [3]
There is thought to be a delay in diagnosis due to the nature of the symptoms and patients being given an incorrect initial diagnosis [6, 7]
Summary
Neuroendocrine tumours are uncommon tumours; there is often a long period between the onset of symptoms and diagnosis. Neuroendocrine tumours (NETs) are rising in incidence and prevalence [1] These tumours can arise in most organs of the body and can present with a multitude of symptoms [2]. They are regarded as rare cancers with a reported incidence of 5–7 per 100,000 population per year and estimated prevalence of 35 per 100,000 [1]. The functional tumours can cause clinical syndromes; the Anecdotally there is thought to be a delay in diagnosis due to the nature of the symptoms and patients being given an incorrect initial diagnosis [6, 7]. The incidence of misdiagnosis is unclear and the duration to diagnosis is not well established
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