Coping with a rare cancer

It can be hard to cope with cancer and its treatment. This can be especially difficult if you have a rare cancer or a rare type of leukaemia or lymphoma.

Coping emotionally

You are likely to feel upset, frightened and confused. A lot of people with rare cancers say they feel isolated as well.

It can be more challenging to find information about rare cancers. And it might be difficult to find other people who have the same type of rare cancer like you. Talking to other people going through something similar can be helpful. It can be useful even if they don’t have the same cancer type.

You might need to work out who you are going to tell that you have cancer and what you are going to say. You might also have to think about your children.

Coping physically

Cancer and its treatment can cause physical changes in your body. These changes can be tough to cope with and could affect how you feel about yourself. They can affect your self esteem. Or the way you relate to other people, especially close family and friends.

Your diagnosis and its treatment might affect your sexuality and sex life. Don't be afraid to discuss any problems with your specialist nurse or doctor. They might be able to suggest treatments that can help or ways to adjust to changes in your sex life. Also talking to your partner, if you have one, can help you come to terms with any changes.

Tiredness and lacking energy (fatigue) is very a common problem in people with cancer. This could be due to your treatment and cancer itself. It can have a significant impact on your daily life.

Coping practically

A diagnosis of cancer is likely to cause some practical problems. This could include money issues. You might need financial support, including sick pay, benefits and grants.

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 who can offer support. They are trained to support people with cancer. They are there for you, so use them if you need to.

Resources and support

There are different charities and organsations that can provide information and support. These include specific rare cancer organsations.

Last reviewed: 
30 Aug 2019
  • Living with and Beyond Cancer. Taking action to improve outcomes 
    National Cancer Survivorship Initiative (NCSI), 2013

  • The Cancer Survivor's Companion. Practical ways to cope with your feelings after cancer 
    F Goodhart and L Atkins
    Piatkus, 2011

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