Coping with NETs

It isn’t easy to cope with a neuroendocrine tumour (NET). You may have ongoing symptoms that are difficult to control and treatments that other people don’t understand.

Your feelings

You might have a number of different feelings when you're told you have cancer.

You may feel a range of powerful emotions at first such as feeling shocked, upset and find it difficult to take in anything else that is being said to you. Other emotions include feeling:

• numb
• frightened and uncertain
• confused
• angry and resentful
• guilty
• sad

You may have some or all of these feelings. Or you might feel totally different. You may feel them a few at a time or altogether, leaving you feeling exhausted.

Everyone reacts in their own way. Sometimes it's hard to take in the fact that you have cancer at all. You need to do what’s right for you to help you cope.

Counselling can help you to cope better with the difficulties you’ll face. It can help to reduce stress and improve your quality of life.

Helping yourself

You may be more able to cope and make decisions if you have information about your type of cancer and its treatment. Information helps you to know what to expect.

Taking in information can be difficult, especially when you have just been diagnosed or given news about your outlook. Make a list of questions before you see your doctor. Take someone with you to remind you what you want to ask. They can also help you to remember the information that was given. Getting a lot of new information can feel overwhelming.

Ask your doctors and nurse specialists to explain things again if you need them to.

You might feel that you don’t want to know much information straight away. Tell your doctor or nurse. You will always be able to ask for more information when you feel ready.

Remember that you don’t have to sort everything out at once. It might take some time to deal with each issue. Ask for help if you need it.

You can also do practical things such as:

• making lists to help you
• having a calendar with all appointments
• having goals
• planning enjoyable things around weeks that might be emotionally difficult for you

Talking to other people

Talking to your friends and relatives about your cancer can help and support you. But some people are scared of the emotions this could bring up and won’t want to talk. They might worry that you won't be able to cope with your situation or be afraid they will say the wrong thing.

It can strain relationships if your family or friends don't want to talk. But talking can help increase trust and support between you and them.

Help your family and friends by letting them know if you would like to talk about what’s happening and how you feel.

You might find it easier to talk to someone other than your own friends and family. We have cancer information nurses you can call on freephone 0808 800 4040, from 9am to 5pm, Monday to Friday.

Or you may prefer to see a counsellor.

Specialist nurses

Specialist nurses can help you if you’re finding it difficult to cope or if you have any problems. They can get you the help you need. They can also give you information.

Dietitians

Dietitians can help you with any eating problems you have. These might include loss of appetite and weight loss.

You might find it helpful to go to a support group to talk to other people affected by cancer. 

NHS Choices has a service that tells you about information and support.

Coping physically

NETs and its treatment might cause physical changes. These can be difficult to cope with and might affect how you feel about yourself. The changes you have depend on your type of NET and the treatment you have. 

Changes caused by the NET itself

You might have changes that are caused by the NET itself. Changes might include tummy (abdominal) pain if you have a NET in the bowel. Or shortness of breath if you have a lung NET. 

Being short of breath or having abdominal pain can have a big impact on how much you can do each day. And people usually find not being able to get their breath very frightening.

Talk to your doctor or specialist nurse about your symptoms. It is very likely that they can give you treatment to help. They might also refer you to other health professionals such as a dietitian or the symptom control team (palliative care team).  

Changes caused by the hormones made by the tumour

Some NETs make large amounts of hormones and proteins that are released into the bloodstream. This can cause a collection of symptoms called carcinoid syndrome. 

Symptoms of carcinoid syndrome include:

• diarrhoea
• flushing of the skin

You lose a lot of fluid when you have diarrhoea. So it’s important to replace the fluid to prevent dehydration.

Flushing of the skin can be triggered by stress or by eating certain foods. You might find it helps to keep a note of your skin flushes to see what might trigger them.

Changes caused by NET treatments

Surgery is often the only treatment you need for NETs. But surgery can cause scarring and other body changes that might affect your self esteem and the way you relate to other people, especially close family and friends.

Other treatments for NETs involve having regular injections which can cause some discomfort at the injection site.

You might have to cope with feeling very tired and lethargic a lot of time, especially for a while after treatment or if your NET is advanced.

Relationships and sex

The physical and emotional changes you have might affect your relationships and sex life. There are things that you can do to manage this.

Coping practically

You and your family might need to cope with practical things including:

• money matters
• financial support, such as benefits, sick pay and grants
• work issues
• childcare
• Blue Badge applications
• help with travel costs
• changes to your house

Talk to your doctor or specialist nurse to find out who can help. You might be able to get some benefits for yourself and the person caring for you. You might also be able to get grants for heating costs, holidays and other household expenses related to your illness.

Getting help early with these things can mean that they don’t become a big issue later. It may be helpful to see a social worker. Many hospital cancer departments have a social worker available for patients.