Coping and support when you have cancer of unknown primary

Coping with cancer of unknown primary (CUP) can be difficult. You may find you have a lot of different feelings. There is help and support available. There are things you can do, people who can help and ways to cope with a diagnosis of CUP.

Everyone reacts in their own way. Sometimes it's hard to take in the fact that you have cancer at all.

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.

You also have to come to terms with your cancer being advanced and unlikely to be cured. No one can say for how long your treatment will keep the cancer under control. That in itself can be very hard to deal with. Your doctor and specialist nurse will help support you with this.

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.

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 outside your own friends and family. For example your specialist nurse, or other people in a similar situation to you. You could join a support group, or contact one of the CUP charities.

Cancer chat

You can chat with other people affected by cancer in our online forum. 

Specialist nurses

Specialist nurses are usually your first point of call if you have any questions or concerns. Make sure you know who your specialist nurse is and have their telephone number.

Physical changes

CUP is likely to cause physical changes in your body. These changes will depend on where the cancer is in your body. Some changes may be as a result of treatment such as chemotherapy, surgery or radiotherapy. Your doctor or specialist nurse will help you manage any changes. They can refer you to other health professionals if needed, such as dietitians and the symptom control team.

Tiredness

You may feel very tired or lethargic a lot of the time, especially if you are having treatment.

Weight loss

The side effects of CUP and its treatment can make it difficult to eat enough to stay at a healthy weight. This can be very upsetting and worrying.

Speak to your clinical nurse specialist or dietitian about any eating problems. 

Sex and relationships

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.

Support at home for you and your family

GP and nursing support

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.

District nurses

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.

Social workers

Social workers can arrange:

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

Your social worker can also help with money matters by checking you get all the benefits you’re entitled to. Or they can arrange 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 specialist nurse or your GP to refer you.

Cancer Research UK nurses

Towards the end of life

It’s natural to want to find out what is likely to happen in the last few weeks or days of life.

You might need to choose where you want to be looked after and who you want to care for you.