Neuroendocrine tumours (NETs)

Treatment

How are NETs treated?

The best treatment or combination of treatments for you will depend on:

  • Where the tumour is and its size
  • If it has spread and where it has spread
  • How fast the cancer cells are growing
  • Your symptoms
  • Whether or not the tumour is producing hormones (functional or non-functional)
  • Your general health

If a tumour is found early, it may be possible to remove it with surgery and sometimes this may cure the cancer. More often, NETs are treated to keep the disease and its symptoms under control, often using drugs. 

Types of treatments for 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.

Somatostatin analogue drugs

Somatostatin analogues are drugs that can lower the amount of hormones produced by some types of NET. This can reduce symptoms caused by the hormones, such as diarrhoea and hot, flushing skin. They can also control the growth of some types of NETs. Examples of somatostatin analogue drugs are lanreotide and octreotide. These drugs are given by injection, usually once a month. Your GP or practice nurse will give you the injection. Patients or carers can also be shown how to do it. You will stay on these drugs as long as they continue to control your tumour and your symptoms.
  • 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.

Other drug treatments

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.

Liver directed therapy

Liver directed therapy is often used to treat NETs that have spread to the liver. It is mainly used when surgery can’t be done, to control symptoms and the growth of the cancer in the liver. Liver directed therapy works by slowing or blocking the blood supply to the tumour.

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.

Peptide receptor radionuclide therapy (PRRT)

PRRT is a type of internal radiotherapy. PRRT may be used for NETs that have spread. PRRT will only be considered if you have receptors on your cancer cells that allow them to be targeted by the radiation.

A radioactive substance is put into your bloodstream through a drip. Most patients have 4 treatments (infusions), about 8 weeks apart. The time between treatments may be longer, depending on how you are responding to treatment and availability of treatment. You will usually stay overnight in hospital for the first infusion. For the remaining 3 infusions you may stay in hospital overnight or go home the same day.

You will be checked at the PRRT clinic in between treatments. You will have a scan to check the amount of radioactivity delivered to certain organs. Your bloods will also be checked regularly, to make sure you are well enough to have the next infusion.

More information on PRRT.

External beam radiotherapy

External beam radiotherapy may be used to control symptoms such as bone pain, to help you feel better. With external beam radiotherapy, the radiation comes from machines which aim rays directly at your tumour or the tumour site.

For symptom relief (palliative radiotherapy), you will usually only need a short course of radiotherapy. You may have a single dose or a dose divided into a few sessions.

Read more about external radiotherapy.

Will I get side-effects?

The type of side-effects you get will depend on the type of treatment, the dose, the duration and your own general health. 

Sometimes with MDS it can be very hard to tell if your symptoms are part of your illness or a side-effect of treatment. These symptoms can vary over time and be mild or severe. If you have any symptoms that are troubling you, including any not listed below, let your doctor or nurse know. There are ways to make your life easier and more comfortable.

We have information on ways to cope with different side-effects and symptoms.

NETs patient booklet

Neuroendocrine tumours (NETs)
Neuroendocrine tumours (NETs)
Booklet 79 pages 10.73 MB
Information for neuroendocrine (NETs) tumour patients, including tests, staging, treatment and side-effects, and how to cope.

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