Coping with a rare cancer

You may have many different feelings after being diagnosed with cancer. This is natural. But having a rare cancer can bring extra challenges, such as greater uncertainty and isolation.

There is often less information available about rare cancers. This can mean doctors find it harder to answer questions or predict what may happen. You may need to travel further from home for treatment for a rare cancer. You may also feel your family and friends don’t understand what you are coping with.

Some things that may help are:

  • talking about your feelings to someone you trust and feel comfortable with
  • talking to your cancer team or GP
  • calling the Macmillan Support Line on 0808 808 00 00
  • writing your feelings down or writing a blog about your experiences
  • making contact with others through an online cancer community.

If you or someone close to you thinks you may need help with anxiety or depression, speak to your GP, specialist doctor or nurse. They will listen and offer advice. They may also refer you to a counsellor or psychologist, or prescribe medication to help.

Challenges of coping with a rare cancer

It is natural to have many different feelings after a cancer diagnosis. But if you have a rare cancer, you may face extra challenges. Two common issues people with a rare cancer may face are uncertainty and isolation.

Cancer always brings uncertainty, but this can be greater with a rare cancer. Often, there is less information available about rare cancers. This means it can be harder for doctors to answer your questions or make predictions about what may happen.

Many people with cancer feel isolated, but if you have a rare cancer this can be even more of a challenge. You may need to travel to a hospital far from home for treatment. This can mean time spent away from family and friends. If the cancer you have behaves or is treated differently from common cancers, you may feel your family and friends don’t understand what you are coping with.

Talking to people who have the same type of cancer can be really helpful. Realising that other people have similar thoughts and feelings and have faced similar challenges can mean you feel less alone. But it can be more difficult to meet people with the same type of cancer when you have a rare cancer.

With a rare cancer, you might not get sick in the way people expect. I feel like if I had breast cancer, they would be more sympathetic and understanding.

Eileen


What can help

Your cancer team can be a very important source of support. It is important to talk to your cancer doctor or clinical nurse specialist about how you are feeling. Tell them if there are things you are finding difficult to cope with. If you need more specialist help and support in coping with your feelings, they can refer you to a psychologist or counsellor.

Focusing on what you can control is one way to help you manage uncertainty. Try to concentrate on what you can influence and do now. This can include:

  • talking about your feelings
  • getting support
  • becoming more involved in your care
  • following advice from your cancer team
  • focusing on your health and well-being
  • knowing when you need help with your feelings and where to get it.

Some people feel they need to look as if they are coping well. They feel they must put on a brave face or protect other people’s feelings. But people close to you usually want to know how you really feel so that they can support you. Sometimes they may find it hard to talk to you about their own feelings if you do not talk to them about yours. It can be lonely for everyone involved if you are all protecting each other.

Talk to someone you trust and feel comfortable with. If you find it hard to talk to people close to you, tell your cancer team or GP. They can arrange extra support for you. You can also call the Macmillan Support Line on 0808 808 00 00 to talk to our cancer support specialists.

Talking about your feelings helps you to:

  • get them out in the open and stop you from going over things repeatedly
  • understand your feelings and put them into perspective
  • work out if you need to act on them, for example by contacting your cancer team, to stop worries from growing bigger in your mind
  • feel closer to the people you talk to.

Ask your cancer team if there is a patient organisation or local support group for the type of cancer you have. Some patient organisations offer buddy systems. Some offer counselling or relaxation therapies. Many people with rare cancers make contact with others through an online cancer community, such as Macmillan’s Online Community. These can be a good way of asking questions and getting support from others through the internet.

Write it down

Writing about what is happening to you can help you express your deepest feelings privately. You might find that it helps give you a sense of control. Sometimes keeping a diary or journal can help you work through various problems.

Reading it back can help you become more aware of your thoughts and feelings. It can also help you identify what the real issues are for you, what triggers them and what has helped you to cope.

Try to include the good or positive things that have been helpful as well as the things you find difficult.

Some people write blogs about their experiences and feelings during and after cancer treatment.

Even if you have a very supportive and loving family, you still have to face cancer alone in many ways. There are an awful lot of feelings of isolation and loneliness.

Gary

I found the Macmillan Online Community, where I could talk to other people going through similar experiences. I wasn’t expecting to find that. It was really helpful.

Waheed


Knowing when you need more help

Feeling anxious all the time can be very hard. You may start to avoid social situations. This can lead to you feeling isolated. You may also have feelings of sadness and a low mood. If these feelings do not improve or they get worse, it may mean that you are depressed.

Sometimes, it is difficult to know if you are depressed. It can also be hard to admit that you are depressed and to talk about it. Other people may notice and suggest that you might need help.

If you or someone close to you thinks you may need help with anxiety or depression, speak to your GP, specialist doctor or nurse at the hospital. They will listen and offer advice or refer you to a counsellor or psychologist. Your doctor may prescribe medication to help. This may only be needed for a short time.

We have more information about coping with depression and anxiety. There are also organisations that can help you.

Back to Rare cancers

Types of rare cancer

We have information on many types of rare cancers. Use our A-Z list to find out more.

Treating rare cancer

If you have a rare cancer, your treatment will usually be planned by a team of specialists.