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Neuroendocrine cancers

Neuroendocrine tumours (NETs) are rare cancers. They are most likely to develop in your digestive system (gastrointestinal), your lungs or your pancreas.

Go to the NHS website for more information about neuroendocrine tumours. The Neuroendocrine Cancer UK website also provides information and support for those affected by neuroendocrine cancer.

King’s Neuroendocrine Tumour Unit is a Centre of Excellence that provides specialist treatment for all types NETs. We diagnose, treat and offer rehabilitation at the unit so we can provide our patients with the best possible care. We see locally referred patients as well as those from across the UK. Our service is part of King’s Health Partners NET service and works in partnership with Kent and Hampshire Hospitals.

If you have a bile duct/gall bladder, pancreas or secondary (metastatic) liver cancer you will be seen by our hepatobiliary pancreatic (HPB) cancer service.

What to expect at your appointment

We hold our clinics every Thursday in suite 9, on the third floor of the Golden Jubilee Wing.

Your first appointment at hospital may take between 45 minutes and two hours. You may have tests and investigations on the same day or at a later date.

You will see one of our consultants. They will ask you about your symptoms, your medical history and general health, and they may examine you. They may also discuss with you any tests and treatments you have had and your family medical history, if relevant.

They will explain any tests you need and book them for you. If appropriate, they will also discuss your treatment plan with you. They may refer you to another service for tests and treatment.

You may also meet the NET clinical nurse specialist (CNS) who will be your key worker during your care, and will support you and your family. You will also be given information about the type of cancer you have and other sources of support, such as King’s Macmillan Information and Support Centre.

We usually send you appointment letters for tests, investigations or treatments by post.

Tests and investigations

Because these types of tumour are so complex, you are likely to need a number of blood tests, scans and investigations so we can make sure we have all the information we need to make the right diagnosis and offer you the best care. You will have most of these at King’s and they include:

  • biopsy such as fine needle aspiration (FNA)
  • blood tests
  • CT scan
  • endoscopy including an endoscopic retrograde cholangio pancreatography (ERCP); percutaneous transhepatic cholangiography (PTC); upper/lower endoscopy; video-capsule endoscopy (enteroscopy); and endoscopic ultrasound (EUS)
  • MRI scan
  • nuclear medicine scan including bone scan, octreotide and MIGB scan, and glomerular filtration rate (GFR) study
  • PET-CT scan at King’s or University College Hospital.

Treatments

Your care and treatment depends on the type cancer you have, its size and where it is, how far it has advanced (the stage) and your overall health. The final decision about what treatment you have is yours.

After our team of specialists reviews the results of your tests and investigations, we will arrange another appointment so you can discuss your treatment options with your consultant and clinical nurse specialist.

Your care usually includes one or more or a combination of treatments. You may have them at King’s, Guy’s or St Thomas’ hospitals as well as at your local oncology centre. You may also be asked if you would like to take part in medical trials.

Treatment may include:

  • biological therapy such as somatostatin analogues
  • surgery such as a resection, where the affected part of your organ is removed
  • molecular receptor targeted therapy such as Everolimus or Sunitinib
  • radiation therapy such as lutetium dotatate therapy
  • clinical trials – if there is suitable trial we will discuss this option with you
  • chemotherapy at Guy’s or your local oncology centre
  • endoscopy including ERCP
  • Interventional radiology, including radio frequency ablation (RFA)
  • palliative care and symptom control.

Who to contact

At your first appointment, we will tell you who your key worker is, and how and when you can contact them. Your key worker is usually a clinical nurse specialist (CNS).

Clinical nurse specialist

Wendy Martin for pre-assessment, SIRT and NETs
Tel: 020 3299 3854
E-mail: [email protected]

Non-clinical support

If you have practical queries or want further information about support groups, contact the Macmillan Centre at King’s.

Our team

Your care will be provided by a group of experts called a multidisciplinary team (MDT). This is a team of doctors, nurses and other health professionals specialising in treating your type of cancer. You can discuss your care with them and ask them any questions you have about your treatment. Our team includes.

Consultant Gastroenterologists with a specialist interest in NETs

  • Dr John Ramage, clinical lead for King’s Health Partners NETs Service
  • Dr Raj Srirajaskanthan

How we support you

We want to make sure that you get all the assistance you need to live well with – and after – cancer. There’s a wide range of support available to help you cope with cancer, including physical, emotional and practical advice for you, your family, friends and carers.