Royal Free Hospital specialist units host the first international symposium on carcinoid heart disea

23 September 2014

The first international symposium on carcinoid heart disease, which was organised by the Royal Free in early September, has set the stage for international guidelines for the management of this disease.

The event showcased the work at the Royal Free Hospital.  It has the largest valvular heart disease and carcinoid heart disease clinic in Europe which in conjunction with the hospital’s neuroendocrine tumour (NET) unit is a European Centre of Excellence.

Carcinoid heart disease (CHD) develops in patients with specific types of cancerous neuroendocrine tumours, known as carcinoid tumours.  If these tumours spread to the liver substances they secrete can affect the heart, leading to damaged valves, usually on the right side of the heart.  This has a significant impact on a patient’s chances of survival.  A patient with a carcinoid tumour usually has a relatively long survival rate but if CHD develops this, rather than the tumour, becomes the cause of death.

Through improved diagnosis and management of the disease, some patients treated at the Royal Free have gone from being unable to walk even short distances to becoming fully functional again after surgery or other treatment.  Patients who have suffered increasingly poor health for many months without knowing why they are so unwell, have, after referral, been tested and diagnosed at the neuroendocrine tumour (NET) unit.  When appropriate, surgery has followed to replace heart valves along with monthly injections to manage the tumours.

Research carried out at the Royal Free has been instrumental in establishing international guidelines for management of the disease. Guidelines include using a biomarker called NT proBNP for screening patients for CHD which has been shown to be cost effective compared with investigation using echocardiography.  The guidelines also propose using strong treatment to control the secretions to the heart from the NETs.  Research suggests that attacking the tumours in this way slows the development and spreading of the disease.  The meeting also featured potential new ways of treating CHD such as non-surgical methods to replace heart valves.

The Royal Free’s NET unit led by Professor Martyn Caplin supported by Dr Christos Toumpanakis was the first UK centre to be made a European Centre of Excellence for NET. The valvular heart disease and carcinoid heart disease unit is led by Dr Joseph Davar.

Dr Joseph Davar said: “Carcinoid heart disease is a complex pathology which leads to significant deterioration of outlook if not dealt with in an appropriate and timely way.  Over many years the Royal Free Hospital has created strong links between our two units to look after patients with these multifaceted problems.

“This first international symposium was organised by Royal Free Hospital consultants and attracted leading specialists in the field. Cardiologists, neuroendocrine tumour specialists and cardiac surgeons from such institutions as the Mayo Clinic, Mount Sinai Hospital, Charite and others shared best practices to further advance research in the field and to work together to improve the health of our patients."

Presentations at the symposium, which was held on 4 September at the London Marriott Hotel Regent’s Park, reported on developments in diagnostic methods and both surgical and non-surgical management of the disease.

Notes to editors

1. The Royal Free attracts patients from across the country and beyond to its specialist services in liver, kidney and bone marrow transplantation, haemophilia, surgery for hepatopancreatobiliary (HPB) conditions, clinical neurosciences, renal, HIV, infectious diseases, plastic surgery, immunology, vascular surgery, cardiology, amyloidosis and scleroderma and is a member of the academic health science partnership UCLPartners.