What is Neuroendocrine tumours?

Neuroendocrine tumours (NETs) are a group of cancerous tumours that grow from the adrenal glands, parathyroid glands, thymus, pancreas, lungs, stomach, liver, intestines and other organs and tissues.

There are several types of NETs, which are based on the type of cells they develop from. These types include:

  • Gastric NETs develop from cells in the stomach.
  • Pancreatic NETs develop from cells in the pancreas.
  • Small cell lung NETs develop from cells in the lungs.
  • Thymic NETs develop from cells in the thymus.
  • Neuroblastoma tumours develop from cells in the nervous system.

These types of tumours can develop many different types of symptoms. Common symptoms include:

  • A lump or swelling in the tumour
  • A persistent cough
  • Loss of appetite
  • Weight loss
  • Nausea
  • Vomiting
  • Diarrhoea
  • Pain in the tumour
  • Headaches

Some tumours will cause the tumour to grow very quickly. This means the tumour can cause symptoms quickly.

Symptoms of the tumour can also vary depending on where the tumour is in the body. For example, symptoms can include:

  • Abdominal pain
  • Back pain
  • Fatigue
  • Fever
  • Heartburn
  • Sweating
  • Swelling of the tumour

If you have any of these symptoms, it is important to see your GP as soon as possible.

What is the life expectancy for people with neuroendocrine tumours?

The life expectancy for people with neuroendocrine cancer is dependent on the type of tumour and whether or not it is in remission at the time of diagnosis.

For example, people with pancreatic NETs have a better life expectancy than people with small cell lung NETs.

The life expectancy for people with neuroblastoma depends on the type of tumour and whether it is in remission.

For example, people with neuroblastoma that is in remission have a better life expectancy than people with neuroblastoma that is not in remission.

How is neuroendocrine tumour diagnosed?

If you are experiencing any of the symptoms of a neuroendocrine tumour, it is important that you see your GP.

Your GP will ask you questions about your symptoms, including where you have noticed the symptoms. They will also ask about any previous or family history of neuroendocrine tumours.

Your GP will then carry out a physical examination. They will also carry out tests, including a CT scan, MRI scan, PET scan or ultrasound scan.

The tests will be used to identify the type of tumour, the location of the tumour and whether or not the tumour is in remission.

Your GP will also carry out a blood test to check your thyroid function and also to check for any signs of tumour spread.

How is neuroendocrine tumour treated?

Treatment for neuroendocrine tumours depends on the type and location of the tumour.

Treatments can include:

  • Surgery to remove the tumour.
  • Chemotherapy to kill the tumour cells.
  • Radiation therapy to kill the tumour cells.

There are many different types of neuroendocrine tumours, which are based on the type of cells they develop from.

Neuroendocrine tumours are rare, with an estimated 500,000 new cases in the UK each year.

Treatment for NETs is often complex and may involve many specialists.

If you have a treatment plan, you should be aware of what is involved and discuss this with your doctors.

Your care team will be able to provide you with more information about what is involved and how to prepare for your appointment.

Can neuroendocrine tumours be prevented?

There are a number of things you can do to help prevent neuroendocrine tumours.

  • Eat a healthy diet with plenty of fruit and vegetables.
  • Avoid drinking too much alcohol.
  • Limit the amount of salt you eat.
  • Quit smoking.

If you develop any symptoms of a neuroendocrine tumour, you should go to your GP as soon as possible.

The symptoms of a neuroendocrine tumour can be similar to those of many other conditions. This may make it difficult to make a diagnosis and to decide on the best treatment for you.

If you do have a diagnosis of a neuroendocrine tumour, you may find it difficult to cope with the side effects of treatment.

Some people find that having treatment can leave them feeling tired, weak, anxious or depressed.

The treatment plan for your neuroendocrine tumour will be decided by your care team based on:

  • Your age and overall health
  • How well you can cope with treatment
  • The size of your tumour
  • Whether you have any other medical conditions
  • Your personal preference

You can talk to your care team if you have any concerns or questions about your treatment.

The information on this page can be accessed in the following formats:

  • Order a printed copy of this information from our shop.
  • Download a print-ready PDF of this information here (requires Adobe Acrobat Reader).

If you are experiencing a mental health or emotional difficulties, you can also contact our helpline.

Alternatively, you can contact our helpline if you need to talk to someone about your mental health or emotional difficulties.

What is the outlook for people with neuroendocrine tumours?

The outlook for people with neuroendocrine tumours depends on the type of tumour.

If the tumour is in remission or the tumour is not causing any symptoms, the outlook is very good.

However, the outlook is not as good for people with tumours that are in remission, as these tumours tend to come back at some point.

It is also important to note that even if you have neuroendocrine tumours, you will not develop the tumours again.

How can I help myself?

The most important thing you can do to help yourself is to follow the treatment plan your care team recommends.

Your treatment plan will include a number of things, including:

  • Eating a healthy diet
  • Taking your medication
  • Doing physical activity
  • Finding support
  • Dealing with any side effects of treatment
  • Treating any mental health or emotional difficulties

It is important to remember that you will need to take part in all of these things. If you don’t, your treatment plan may not be effective.

We recommend that you follow the treatment plan that your care team recommends, but it is your choice how much time you spend on it.

If you have questions about what is involved in your treatment plan, you can contact your care team.

Outlook

The outlook for people with neuroendocrine tumours is generally good.

However, it is important to remember that the tumour can come back.

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