Neuroendocrine Tumour (NET)

What are Neuroendocrine Tumours?

• Relatively rare cancers but increasing in incidence. They now rank as the tenth most common cancer in England. 
• Usually slow growing and can metastasise, most commonly to the liver. 
• They can develop anywhere in the body but are most commonly found in the small bowel, lung, and pancreas. 
• Some NETs may produce hormones that can cause other symptoms like diarrhoea and facial flushing (carcinoid syndrome). 
• Some NETs will require treatment, which can sometimes include surgery, regular medication and follow-up with scans, blood and urine tests. 
• When surgically removed, some NETs will not require any further follow-up. 
• Some NETs are fast-growing. These are called Neuroendocrine Carcinomas (NECs) and are a separate group of cancers that are managed by oncology teams. 

What to expect after referral 

Once we receive your referral, your case is reviewed at the NET MDT meeting each Thursday afternoon. Complex cases involving heart or liver transplants will be discussed at our focused MDTs. Recommendations are shared with your referring team, who will update you at your next clinic. Occasionally, we may invite you to visit our centre to discuss your care plan in person. 

Treatments and support services 

We deliver the latest cancer treatments to patients, including: 

• medical treatments for NETs 
• highly specialised cancer surgery 
• CHD surgery 
• liver transplantation for NETs 
• nuclear medicine treatments such as lutetium radionuclide therapy 
• targeted chemotherapies such as everolimus, sunitinib, capecitabine and temozolomide 
• complex radiological interventions, including radiofrequency ablation and trans-arterial embolisation 
• urology services 
• genetic NETs such as Multiple Endocrine Neoplasms (MEN), paraganglioma or pheochromocytomas 
• gastroenterology, complex nutritional support service 
• NET dietician support 
• emotional support services 

Our clinics 

Carcinoid Heart Disease (CHD)

CHD affects some patients with NETs, requiring careful cardiac assessment and treatment. Our dedicated CHD MDT clinic which is based in the Centre for Rare Diseases (CfRD) at Queen Elizabeth Hospital Birmingham (QEHB).

NET liver transplantation

We manage liver transplantation referrals through our dedicated NET Liver Transplantation MDT, also based at the CfRD at QEHB.

Clinic location and times

• NET clinic, QEHB: Monday mornings
• CHD clinic, Centre for Rare Diseases (CfRD): Fourth Monday afternoon of the month
• NET clinic, CfRD (with specialist NET dietician support): Tuesday afternoon 
• NET Transplant Oncology Clinic, CfRD: Fourth Wednesday of the month

NET MDT meetings

• Main NET MDT: Thursday afternoons 
• GI surgical planning MDT: Monday mornings 
• CHD MDT: First and third Thursday of the month 
• Transplant MDT: Fourth Thursday of the month 

Contact details

NET Clinical Nurse Specialist (CNS) and administration team

• 0121 371 7993
• birminghamnetcentre@uhb.nhs.uk

The team operates from Monday to Friday, 8:00-16:00

Please leave your name, hospital number, contact details, and reason for your call. We aim to respond within three working days.

Acute Oncology Services (AOS)

For any patients on anti-cancer treatment who suffer from:

• a temperature of 37.5C or above

• flu-like symptoms

• shivers/chills or feel poorly

Please call the AOS 24-hour emergency helpline straight away on:

• 07789651543

Support and information

Our service is supported by:

• Clinical Nurse Specialists (CNS): often your main contact and provide ongoing support.
• NET CNS: Often meet during your first clinic appointment.
  • The NET CNS working hours are Monday to Friday, 08:00-16:00
• Neuroendocrine Cancer UK: Based in the UHB Cancer Centre. Monday to Friday, 08:00-16:00.
  • 0121 697 8417
• MyHealth@QEHB: A patient portal for viewing appointments, clinic letters, and routine test results