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Find out what you can do, who can help and about how to cope with having cancer of unknown primary.

Your feelings

You might have a number of different feelings when you're told you have cancer. You may feel shocked and upset. You might also feel:

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

You may have some or all of these feelings. Or you might feel totally different. Everyone reacts in their own way. Sometimes it is hard to take in the fact that you have cancer at all.

Feelings are a natural part of coming to terms with cancer. All sorts of feelings are likely to come and go.

It can be particularly difficult to cope with a diagnosis of cancer of unknown primary. Some people say they feel like they are fighting an invisible enemy. Some people feel let down that despite all the tests the primary cancer can’t be found.

You also have to come to terms with your cancer being advanced and unlikely to be cured. No one can say 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 all of this.

Helping yourself

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

Taking in information can be difficult at first. Make a list of questions before you see your doctor. Take someone with you to remind you what you want to ask and help remember the answers.

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

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.

Treatment causes side effects. These can be mild or more severe. Tell your doctor or nurse if you have any side effects or if they get worse. They can treat them and help you find ways of coping.

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.

Help your family and friends by letting them know 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.

You can call the Cancer Research UK nurses on freephone 0808 800 4040, from 9am to 5pm, Monday to Friday.

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.

Support groups

You may 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 local information and support.

Physical effects

Having cancer can 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.

With an advanced cancer, you might lose weight. You may also have to cope with feeling tired and lethargic a lot of the time.

Your doctor or specialist nurse will help you to manage any changes, and refer you to other health professionals if needed, such as the dietitian or symptom control team.

Relationships and sex

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

Coping practically

Practical things you and your family might need to cope with include:

  • money matters
  • financial support, such as benefits, sick pay and grants
  • work issues
  • childcare

Talk to your doctor or specialist nurse to find out who can help. Getting early help with these things can mean that they don’t become a big issue later.

Information and help

Dangoor sponsorship

About Cancer generously supported by Dangoor Education since 2010.