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Coping with a rare cancer

This page is about coping with a diagnosis of a rare cancer. There is information on  

 

A quick guide to what’s on this page

It can be difficult coping with a diagnosis of cancer both emotionally and practically. And when you have a rare cancer it can be more difficult. You are likely to feel upset, frightened and confused. Many people with rare cancers say they feel isolated as well.

How cancer affects you depends on where your cancer is in the body. Some cancers can affect you physically and cause changes in your body. How you feel may also depend on the treatment you have.

As well as coping with the fear and anxiety that a diagnosis of cancer brings, you may have to work out how to manage practically. There may be money matters to sort out. Who do you tell that you have cancer? There may be children to think about.

Changes can be difficult to cope with. Do ask for help if you need it. Your doctor or specialist nurse will know who you can contact. They can put you in touch with people trained in supporting those with cancer. They are there to help and want you to feel supported. So use them if you feel you need to. Our coping with cancer section also has lots of information to help you.

Talking to other people going through something similar can be helpful, even if they don’t have exactly the same cancer as you. You can contact them through cancer support groups or our online forum, Cancer Chat.

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Coping with your diagnosis

Coping with a diagnosis of cancer can be difficult both emotionally and practically. When you have a rare type of cancer, leukaemia or lymphoma it can be more difficult. You are likely to feel upset, frightened and confused. Many people with rare cancers say they feel isolated as well. It can be more difficult to find information about rare cancers. And it may be difficult to find other people who have the same type of cancer, leukaemia or lymphoma as you.

Talking to other people going through something similar can be helpful, even if they don’t have exactly the same cancer type. Cancer Chat,  our online forum, is a safe space for you to talk, share experiences and find support.

You can also contact one of the rare cancer organisations.

 

Coping physically

Cancer and its treatment may cause physical changes in your body. These changes can be very difficult to cope with and may affect how you feel about yourself. Such changes can affect your self esteem and the way you relate to other people, especially close family and friends. You may feel very tired and lethargic a lot of the time, particularly during treatment and for a while afterwards. Or you may feel very lacking in energy if the cancer is advanced.

We have more information about tiredness and cancer and treating cancer fatigue.

If you are having a sexual relationship, these changes may affect your sex life. We have information about how cancer can affect your sex life.

 

Coping practically with a rare cancer

When you have cancer you are likely to have to work out how to manage practically. This may include money issues. You may need financial support while you are having treatment and when you are recovering. This may include sick pay, benefits and grants.

You may also need to work out who to tell that you have cancer and how to tell them. You may also have children to think about. There is information about talking to people about your cancer and how and what to tell children in the talking about cancer section

Try to remember that you don’t have to sort everything out at once. It usually feels more manageable to deal with one thing at a time. You can ask for help if you need it. Your doctor or specialist nurse can put you in touch with people specially trained in supporting people with cancer. They are there for you so use them if you feel you need to.

 

More information about coping with a rare cancer

The coping with cancer section has lots of information about coping emotionally, coping practically and coping physically.

Remember that there is information about many types of rare cancers on this website – look in the cancer types section and the alphabetical list in this section. If you can’t find the information you are looking for, use the search box at the top of the page to check for information elsewhere on the site. If you still can’t find any information, you can contact one of our cancer information nurses who will be able to help you.

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Updated: 27 February 2014