Coping with neuroendocrine cancer

Coping with neuroendocrine cancer can be difficult. You may have ongoing symptoms that are difficult to control and treatments that other people don’t understand. You may find you have a lot of different feelings. There are things you can do, people who can help and ways to cope.

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.

Finding out about your outlook (prognosis)

There are lots of different types of neuroendocrine cancer. The likely outlook (prognosis ) varies, depending on the type and how well you are. Some neuroendocrine cancers grow quicker than others. And some are more likely to come back than others. But many are curable or can be controlled for many years. 

Not everyone wants to know about their prognosis. Reading information about survival can be difficult. You can save it to read another time when you feel ready. And it’s okay if you don’t want to read this information at all.

Survival statistics can be useful, but cannot tell you exactly what will happen to you. The best person to do this is your doctor. Talk to them or to your specialist nurse if you want to know about your likely prognosis. 

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 specialist nurses 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. 

Or you may want to see a counsellor.

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.

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.

Internet forums are another way to talk to other people affected by neuroendocrine cancer. Cancer Chat is our free online discussion forum for people affected by cancer. It is a safe space to talk to other people in similar situations, and find information and support.

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.

Coping physically

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

There are 2 key groups of neuroendocrine cancer: 

• neuroendocrine tumours (NETs ) 
• neuroendocrine carcinomas (NECs ) 

NETs and NECs are very different. The problems you have also depend on whereabouts in your body the neuroendocrine cancer develops. This is called the primary site. 

Changes caused by the neuroendocrine cancer

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

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 a neuroendocrine tumour (NET)

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 cancer treatments

For some NETs, surgery is often the only treatment you need. But surgery can cause scarring and other body changes that might affect how you feel about yourself.

You might also need regular injections for a NET, which can cause some discomfort at the injection site.

Neuroendocrine carcinomas (NECs) are a type of fast growing neuroendocrine cancer. You usually have chemotherapy as part of your treatment for an NEC. This can affect how you are feeling and cause side effects. You might feel very tired and lethargic a lot of time, especially for a while after treatment. Or if your cancer is advanced.

Dietitians

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

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 hospitals have a social worker available for people with cancer.

Support at home for you and your family

GP

Your GP manages your healthcare when you are at home. They can help with any medical problems that come up. They can also make referrals to a community service for you. The availability of the different community services may vary depending on where you live.

Community or district nurse

These nurses work in different places in your local area and may visit you in your home. They can:

• give medicines or injections

• check temperature, blood pressure and breathing

• clean and dress wounds

• monitor or set up drips

• give emotional support

• teach basic caring skills to family members where needed

• get special equipment such as hospital beds, special mattresses, commodes or bed pans

Community services vary from area to area. Your hospital specialist nurse can tell you what is locally available to you.

Community palliative care nurses

Community specialist palliative care nurses include Macmillan nurses and hospice nurses. They specialise in symptom management such as pain control, sickness, and other cancer symptoms. They also give emotional support to you and your carers.

Marie Curie nurses

Marie Curie nurses give nursing care to people with advanced cancer in their own homes. They can visit during the day or spend the night in your home to give your carers a break.

Social workers

Social workers can help to support you with your situation at home. They can arrange:

• home helps to help with shopping or housework
• home care assistants for washing and dressing
• meals on wheels
• respite care

Your social worker can also help with money matters by checking you get all the benefits you are entitled to. Or they can advise you about charity grants for things like extra heating costs or special diets.

Contact a social worker yourself by getting in touch with your local social services office. Or ask your hospital nurse or your GP to refer you.

Local support services

There is usually other help available but services can vary from place to place.

Sometimes local voluntary groups offer sitting services. Someone comes to stay with you while your relative goes out.

Good neighbour schemes offer befriending or practical help with shopping or transport.

Local cancer support groups often offer practical help. And they are a good source of information about services in your area. Ask your doctor or nurse about local groups.