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Neuroendocrine Cancer Community

New ENETs Guidance paper for Carcinoid Syndrome & Carcinoid Heart Disease

May 31, 2022

New ENETs Guidance paper for Carcinoid Syndrome & Carcinoid Heart Disease: Recommendations and Future Research Aims

Carcinoid syndrome (CS) is the most frequent hormonal complication accompanying neuroendocrine neoplasms (NENs), predominantly encountered in up to 35% of patients with well-differentiated neuroendocrine tumours (WD NETs) of small bowel origin, followed by lung NETs, and less frequently seen in pancreatic, ovarian, thymic, or unknown origin NETs.

The main symptoms are skin flushing, secretory diarrhoea, bronchospasm, or abdominal pain (in some cases of advanced intestinal NETs) in the presence of elevated levels of serotonin and/or other biologically active amines and peptides.

Carcinoid heart disease (CHD) is a rare and complex cardiac complication occurring in patients with advanced NETs and CS: patients may be initially asymptomatic, or start to develop symptoms of right-sided heart valves regurgitation/stenosis  – left untreated can lead to right heart failure (RHF).

* ENETs Guidance paper for Carcinoid Syndrome & Carcinoid Heart Disease*

This excellent (Open Access) ENETS guidance paper not only outlines current knowledge and recommended assessment / treatment pathways, but also highlights the ongoing unmet needs that necessitate investment in further research & collaboration #FINDtheGap

We, at NCUK, welcome the recommendations ‘to pave the road for more standardised care for our CS and CHD patients’ – to improve patient experience, as well as outcomes.