Neuroendocrine tumours (NETs)

If your NET is not causing you problems, you may not start treatment straight away. Instead your medical team will monitor your cancer closely with tests such as scans and blood tests. You can start treatment if the cancer starts to grow, spread or cause problems. 

Active surveillance means you can avoid or delay unneccesary treatment and treatment side-effects that can affect your quality of life. 

You might feel anxious about not having any treatment. We have information on having active surveillance.

Removing some or all of the tumour. For early-stage tumours, surgery may cure the disease.  Surgery can also be used to relieve symptoms of later-stage NETs. There are many different types of surgery, depending on the type of NET and where it is. 

Read more about surgery for NETs.

• Follow the advice from your NET team about how to take and store your medicines correctly. You should also check the information leaflet that comes with your medicine. Ask your NET team if you have any questions.
• Keep a note of what you eat and how it affects you – see if any particular foods cause symptoms or make them worse.
• Plan ahead before travelling to make sure you get your injections on schedule.
• If you have been prescribed pancreatic enzymes to help you absorb fat, always follow advice about how to take your tablets correctly, e.g. with food.

Side-effects vary from person to person. Sometimes side-effects are worse for a time when you start taking the drugs and then go away or improve. Possible side-effects of somatostatin analogues include:

• Changes to the way your bowel works – diarrhoea or constipation
• Headaches and dizziness
• Loss of appetite
• Feeling sick or vomiting
• Stomach pain or cramping
• Tiredness (fatigue)
• Changes to your blood sugar levels
• Steatorrhea, which causes pale, oily, floating and/or foul-smelling bowel motions caused by difficulty digesting fats. If you have steatorrhea tell your doctor or dietitian, as you may need pancreatic enzymes to help. 

Most side-effects settle down with time. You can ask your NET team about possible side-effects from your medication and let them know if you have any side-effects that are troubling you.

Chemotherapy drugs may be given for some fast growing (poorly-differentiated) NETs or for cancer that has spread. You may also have chemotherapy after surgery, to reduce the risk of the cancer coming back or spreading, depending on the drug. You may have chemotherapy along with other treatments. 

Read more about chemotherapy.

These drugs target certain parts of cancer cells that make them different from normal cells.  They can block substances that help the cancer to grow or stops the blood supply to the tumour. They are usually used to control cancer that has spread. 

They may be used for treatment of advanced NETs of the GI tract, lung and pancreas when surgery can’t be done, and the cancer continues to grow and spread. Examples of targeted therapy drugs used for some type of NETs are sunitinib (Sutent) and everolimus (Afinitor). They are taken as pills. Some targeted therapy drugs are given into a vein through a drip. 

Read more about targeted therapies.

These are drugs that help to improve or prevent side-effects such as diarrhoea, high blood pressure, fast or irregular heart rate and high levels of certain hormones.

HAE blocks or slows the blood supply to the tumour by injecting tiny particles called microspheres into the main blood vessel to the liver (hepatic artery). 

The microspheres are passed into the artery through a thin catheter tube. Without a blood supply, the tumour will shrink or die.

This procedure is done with a local anaesthetic and sedation. You should be able to go home once the sedation has worn off.

This is similar to HAE, but chemotherapy drugs are injected into the artery during the embolisation procedure. You will probably stay in hospital after TACE.

RFA uses heat to destroy cancer cells. 

Read more about ablation treatments.