What are rare cancers?

Common, less common and rare cancers

There are hundreds of different types of cancer. Some of these are more common than others.

In the UK the most common types are:

These four cancers make up more than half of all cancers diagnosed each year (53%).

Then there are less common cancers, such as melanoma and bladder cancer. About 1 in 4 cancers (27%) are less common.

Then there are rare cancers. About 1 in 5 people (20%) with cancer in the UK have a rare cancer. And about 1 in 3 of those rare cancers are very rare types. That means they affect fewer than 1 in 100,000 people each year.

 

Proportions of common, less common, rare and very rare cancers

What types of cancer are rare?

There are many different types of rare cancer. But only a small number of people are diagnosed with each type. Rare cancers include ones with names you may have heard before, including:

There are also many very rare cancers with names that most people do not know.

The diagram below shows where in the body rare cancers develop. About 1 in 5 rare cancers affect the blood and lymphatic system. These include leukaemia and some types of lymphoma.

Parts of the body that are affected by rare cancers

We have more information about different types of rare cancers. You can find out more through our A to Z list.

Reasons why a cancer might be rare

  • Most cancers start in certain types of cells, such as skin cells and the cells lining the organs of the body. A cancer might be rare because it started in a different type of cell than usual, for example in a bone cell.
  • A cancer might be rare because it is a subtype of a more common cancer. For example, non-Hodgkin lymphoma (NHL) is one of the 10 most common types of cancer. But there are many subtypes, and some of these are very rare.
  • A cancer may be rare because it is in an unusual part of the body for that type of cancer. For example, melanoma (a type of skin cancer) is the 5th most common cancer in the UK. But melanoma that starts in the eye is rare.
  • A cancer is rare if it affects a child or teenager. Cancer only affects a very small number of in children and teenagers. This means any cancer in a child or teenage is a rare cancer.

Types of rare cancer

Find information about a rare cancer through our A to Z list.

Diagnosing and treating rare cancers

Diagnosing rare cancers

A rare cancer can be difficult to diagnose. To find out and understand what type of cancer you have, you may be referred to more than one specialist. You may need to have more tests than people with more common cancers.

There are many reasons why rare cancers take time to diagnose:

  • The symptoms may be like those caused by common conditions. For example, back pain can be a symptom of cancer, but it could also be caused by a common back problem.
  • Symptoms of some rare cancers are unusual. This means they could be less well known to doctors than symptoms of more common types of cancer.
  • The cancer develops in a person who is not expected to get cancer. This is especially the case in young adults and teenagers. Because cancer in younger people is rare, doctors may look for causes other than cancer when a young person has symptoms.
  • You might need extra tests to find out the type of cancer. These may take longer to do. For example, samples may need to be sent to a specialist laboratory for examination. Or you may have to travel to another hospital to have a test if it is not available locally.

Symptoms and tests

You may have already seen your GP about your symptoms, or have had tests to look for the cause. But if you still have unexplained symptoms, go to see your GP again. We have more information about possible signs and symptoms of cancer. You are not wasting your GP’s time by doing this.

There are guidelines that help GPs decide if symptoms might be caused by cancer. These explain when to refer people for tests or to a specialist doctor. They also explain how quickly this should happen.

You may have lots of questions about having tests, such as:

  • What tests do I need?
  • When will I get the results?
  • How will I be told the results?
  • When will you know if I have cancer?
  • Who can I contact if I have questions or need more information?

Your doctors may be able to answer some of these questions for you. But with a rare cancer, there may be some things they do not know, so cannot give you information about. We have more information about tests used to diagnose cancer. We also have more in our information about each cancer types.

Waiting for test results can be a difficult time. It may take from a few days to a couple of weeks for the results of your tests to be ready.

Planning treatment for rare cancers

Cancer treatment is usually planned by a team of specialists who work together. This is called a multidisciplinary team (MDT). They have expert knowledge and experience of cancer. The MDT meets regularly. Your cancer doctor or specialist nurse then discusses your treatment plan with you.

There are different MDTs for different types of cancer. Some rare cancers are subtypes of more common cancers. Often these rare subtypes are treated in a similar way to the more common type of that cancer. They are usually managed by the MDT for that type of cancer.

But in some cases, treatment is very different. In this situation, you may be referred to another MDT with experience of that subtype. For example, if you have a breast lymphoma, you may be treated by a lymphoma specialist rather than a breast cancer specialist.

When the MDT plans your treatment, they think about:

  • the type and size of the cancer and whether it has spread
  • your general health
  • national treatment guidelines for the cancer (if available).

National treatment guidelines for cancer are written by cancer experts and based on evidence from research about that cancer. There are guidelines for some rare cancers. But this is not always the case, especially for very rare cancers. If there are no guidelines, the MDT will use the best evidence available to help plan your treatment.

We have information about different types of cancer treatments. We also have more in our information about each cancer types.

Second opinion

This is when you want another opinion about your treatment from a different doctor. If you are thinking about getting a second opinion, talk to your specialist or GP first. Tell them what you are worried about, and ask them to explain anything you do not understand.

If you still want a second opinion you can ask them to arrange it. They are usually happy to do this. It will usually mean seeing another specialist at a different hospital. This may involve travelling further to get there. Getting a second opinion may also mean a delay in your treatment.

Specialist centres

You may need to travel to see doctors at a different hospital who have more experience in the type of cancer you have.

You may also have your treatment at this hospital. But treatments for some rare cancers are the same as treatments used for more common cancers. This may mean your treatment is planned at one hospital but given in a hospital closer to your home.

It is important you know who to contact if you have questions about your care or appointments. There is usually someone who co-ordinates your care. In England, this is your keyworker. In other parts of the UK, it may be a clinical nurse specialist.

You may find it helpful to keep a record of your treatment and appointments. Or you could ask a friend or family member to help with this. You can download our Macmillan organiser or order a paper version.

Cancer research

Clinical trials are medical research studies involving people. This type of research helps doctors find what treatments work best for people with rare cancers. Cancer research has helped ensure that twice as many children in the UK survive cancer now, compared to 40 years ago.

Your cancer doctor or nurse may talk to you about taking part in a clinical trial as part of your treatment. This may mean you have a new treatment that might not otherwise be available. You will also be helping doctors find out which treatments may benefit future patients.

Clinical trials are designed to be as safe as possible. If you take part in a trial, the researchers will monitor you closely during and after. We have more information about taking part in a clinical trials.

Questions for your doctor

Asking questions can make it easier to cope during diagnosis and treatment. It can make you feel more involved in your care. It can also help you to make decisions.

You may want to write down a list of questions to ask. Do not worry about asking all your questions at once. You will have other chances to ask them. It is also okay to ask the same question again. The most important thing is that you understand what your doctor is telling you.

Here are some questions you might want to ask your GP or specialist:

  • How many patients with this type of cancer have you treated?
  • Are there specialist centres that treat this type of cancer?
  • Can I get a second opinion from a specialist in this type of cancer?
  • What is the aim of treatment?
  • Will I have a specialist nurse?
  • Where can I find more information about the type of cancer I have?
  • Is there a patient organisation or support group for the type of cancer I have?

A specialist may also be able to give more information about the following:

  • What are my options for treatment?
  • What will my treatment involve?
  • What are the chances the treatment will work?
  • Are there any clinical trials being done for this cancer that might be suitable for me?

Coping and getting information

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 have extra challenges. Two issues people with a rare cancer often 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 tell you 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 away from the people who usually support you.

The cancer you have may be treated differently from common cancers. You may feel your family and friends do not understand what you are coping with.

Talking to people who have the same type of cancer can be helpful and may make you feel less alone. But it can be difficult to meet people with the same type of cancer when you have a rare cancer.

This page has advice on where to get support to overcome these challenges.

Coping with difficult feelings

Your cancer team can be an important source of support. Tell them how you are feeling and if there are things you are finding difficult to cope with. They can refer you to a psychologist or counsellor if you need specialist help and support.

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 what is happening and how you feel
  • getting support
  • getting involved in your care
  • following advice from your cancer team
  • focusing on your health and well-being
  • asking for help to cope with difficult feelings.

Talk about it

You may feel you need to look as if you are coping well. Or you might want to protect other people’s feelings. But people close to you usually want to know how you feel so that they can support you. They may find it hard to talk to you about their feelings if you do not talk to them about yours.

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 may help:

  • stop your worries from growing bigger
  • stop you going over things in your mind
  • you understand your feelings and put them into perspective
  • you work out what can help
  • you 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. Others offer counselling or relaxation therapies. You may also find people with the same cancer through an online cancer community. These can be a good place to ask questions and get support. You could use our Online Community.

Write it down

Writing about what is happening can help you express your feelings. You might find this helps you to feel in control. Some people write blogs about their experiences during and after cancer treatment.

Keeping a diary or journal may help you work through problems. Try to include the things that have been positive or helpful, as well as the things you find difficult.

Reading what you have written can help you become more aware of your thoughts and feelings. It can also help you identify what you find most difficult and what has helped you to cope.

Knowing when you need more help

Feeling anxious all, or most, of the time can be very hard. You may start avoiding social situations. This can lead to you feeling isolated and low in 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 think, or someone close to you thinks, you have anxiety or depression, there is help available. You can 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.

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

Getting information about a rare cancer

Knowing more about the type of cancer you have and its treatment can help you cope with your situation. But getting information about a rare cancer can be difficult. You may want to know as much as possible about the cancer and its treatments to help you make the best decisions. You may also need information and support to manage any symptoms you have and cope with practical issues, such as work and money.

The first people you should talk to are your cancer team at the hospital. They know the details of your situation and can tell you about plans for treatment. They can help with emotional support and help you contact people who can help with practical issues like work and money.

We have information about many types of rare cancers. If you cannot find what you are looking for, you can also call our cancer support specialists free on 0808 808 00 00.

Even if there is not a lot of information about the type of cancer you have, general information can still help. We have information about:

Patient organisations

There are patient organisations for many rare cancers. These can be a good source of information and support. Patient organisations may know about new treatments and research trials. They may also have contact with the leading specialists for that cancer in the UK. Some patient organisations have online communities. You can use these to read about other people’s experiences, ask questions and share how you feel. Our Online Community has groups for many rare cancers.

Your cancer team may be able to tell you if there is a patient organisation for the type of cancer you have.

Looking for information online

The internet can be a source of good-quality, evidence-based information. But there are also many sites with unreliable and misleading information. If you are trying to find out about a very rare cancer type, there may not be much information online. This means you may be more likely to find poor quality or incorrect information. Always ask your cancer team if you are not sure about something you read.

Here are some tips for finding reliable information about rare cancer types:

  • Look for websites of patient organisations and well-known charities. You can find our information about rare cancer types through our A to Z list.
  • Look for sites which end with .org (not-for-profit organisations) or .gov (government-run).
  • If you find the same details on a few different websites, it is more likely that the information is accurate.
  • Be cautious of websites offering cures, or asking you to buy products as treatments.

Helpful websites for rare cancers

  • Orphanet provides information on rare conditions, including cancers. This includes treatments that may be used, and patient organisations for that cancer. You can also use Orphanet to find out if there are any other names for the type of cancer you have. This can be helpful when you are searching for information.
  • Cancer52 is an alliance of patient organisations for less common cancers in the UK. They provide a list of organisations by cancer type.
  • RareConnect hosts online communities for people affected by rare diseases. They also provide a translation service. This means people from all over the world can access their groups.
  • Rare Cancer Alliance is a US website. It was set up to share information and provide support to people with rare cancers.

How we can help

Clinical Information Nurse Specialists
Our Cancer Information Nurse Specialists are dedicated cancer nurses available to talk to on our Macmillan Cancer Support Line. 
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Online Community
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