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Neuroendocrine Tumour

Easy Read Information

A Neuroendocrine Tumour is a rare type of cancer that develops in your nervous system or some other parts of your body.

This page gives information about what happens if you are referred to our unit and the different ways that we treat this disease.

Who we are

A gastroentero-pancreatic neuroendocrine tumour (or GEP-NET for short) is a rare, slow growing cancer. It involves cells which are part of the nervous system and the endocrine (hormonal) system. GEP-NET can develop in many parts of the body, but it’s most commonly found in the gut.We provide a comprehensive GEP-NET diagnostic and treatment service.

What we do

If you come to the hospital you can expect:

Support - every step of the way

The specialist nurse provides support and information for patients – from the first appointment to treatment and follow-up. The nurse is your first point of contact.

Experts working together to give you the best treatment

Specialists from different medical areas meet weekly. This is called a multi-disciplinary team meeting (MDT) and is central to the way we work. The MDT advise, support and create treatment plans that are personalised for every patient.

Research-driven care

As a university hospital, we conduct research into neuroendocrine tumour diagnosis, treatment and prevention. We regularly publish research papers that help in the fight against GEP-NET.

Being referred to us

Our large, experienced team of experts provide fast diagnosis and comprehensive GEP-NET treatment. Last year over 130 patients were referred to the team. Patients are usually referred to the team from another hospital when the doctor’s investigations indicate a neuroendocrine tumour. This is usually based on the results of an examination of a tissue sample obtained during surgery.

What happens when you see us

Your clinic appointment

We will see you for an appointment within two weeks of receiving the referral. You’ll receive a telephone call from a clinical nurse specialist to discuss your first clinic appointment.

Your appointment may take up to an hour. The specialist will take a full clinical history. This includes a physical examination. Further tests will be arranged for the next two to four weeks. These may include:

  • CT scan
  • endoscopy
  • nuclear medicine imaging
  • echocardiogram
  • blood tests

The different tests give results which – when put together – give indicators of the size of the tumour, whether the tumour has spread anywhere else and whether it is producing any hormones or not.

We would aim to complete all investigations within four weeks. However the results of some tests – like blood tests – may take up to six weeks.

What happens next

Test results

The MDT review and finalise a management plan based on the results of all tests. Sometimes it's necessary to perform more diagnostic investigations before tumour management can be decided.

Please note: the MDT is there to give you expert advice; the final decision about treatment is down to you.

Your second clinic appointment

You’ll be given your test results and a tumour management plan will be discussed with you. This may involve treatment or ‘watching’ the tumour over time to see if there are any changes. Further imaging will be required at a later date.

Neuroendocrine Tumour treatment

Your treatment options are discussed by the multi-disciplinary team. This is a group of gastroentero-pancreatic neuroendocrine (GEP-NET) experts including:

  • hepatobiliary surgeons
  • clinicians, physicians
  • nuclear medicine physicians
  • radiologists
  • clinical nurse specialists.

The MDT give advice on treatment options that would benefit you the most. Of course, you have the final decision about the type of treatment you receive. Treatment options are discussed with you at your second clinic appointment.

Treatment types include:

  • Surgery: This is performed on a small proportion of patients.
  • Somatostatin analogue injections
  • Chemical embolisation
  • Radiofrequency ablation: this uses heat made by radio waves to kill cancer cells.
  • Radiolabelled MIBG therapy
  • Radiolabelled octreotide therapy
  • Radiolabelled microspheres
  • Chemotherapy: this is the use of drugs to kill or shrink cancer cells.

Your clinical nurse specialist will be there throughout your treatment journey. The nurse is your key-worker, and is there to answer any questions you may have.

After initial treatment, you’ll be monitored by the MDT with regular assessment of the progression of the disease and your response to therapy.

Neuroendocrine tumours rarely respond to chemotherapy - so you may not see an oncologist. You’ll be managed by one or more consultants who have an expertise in neuroendocrine tumours.

Not all patients can be cured. You’ll undergo a lot of investigations; these will show the extent of the disease and whether or not the tumour can be removed. If your tumour cannot be removed totally there may be other treatments available.

Palliative care

If the tumour is very advanced - and you’re not fit for treatment - you’ll be offered palliative care. It involves the control of symptoms and improving the general sense of well-being. We have an excellent palliative care team at the hospital.

More information

Clinical trials

You may be asked to take part in a clinical trial. Clinical trials help us learn more about the best way to treat specific conditions. Learn more about the Clinical Research Unit by visiting the website here

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