Rare cancers

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

Some cancer types have different subtypes. For example, there are many different types of lung and breast cancers.

Different types of cancer are called common, less common and rare.

Percentage of cancer diagnoses per year

In the UK, the most common cancers are types of:

• breast cancer in women
• prostate cancer
• lung cancer
• bowel cancer.

The common subtypes of these cancers make up over half of all cancers in the UK. For every 100 people diagnosed with cancer each year, around 53 people (53%) will have one of these most common types.

Some subtypes of these 4 cancers can be rare types of cancer. We explain why a cancer might be rare below.

For every 100 people diagnosed with cancer each year in the UK, approximately 47 (47%) will have a less common or rare cancer. About 23 of those people will have a less common cancer type. Many different types of cancers are included in the less common group, including:

• melanoma skin cancer
• kidney cancer
• brain tumours
• pancreatic cancer.

But again, there are subtypes of less common cancers which can be described as rare.

For every 100 people diagnosed with cancer in the UK each year, around 24 will have a rare cancer type. In the UK and Europe, experts believe a cancer is rare if less than 6 in 100,000 people each year are diagnosed with it.

What types of cancer are rare?

There are many different types of cancer considered to be rare. Only a small number of people are diagnosed with these cancer types every year.

You may have heard of some of these before. They include:

• stomach cancer
• cancer of the gullet (oesophagus)
• leukaemia
• thyroid cancer.

But there are many rare cancers that most people have not heard of. These can start anywhere in the body and include:

• types of blood cancer
• cancers affecting the female reproductive organs such as the ovaries, cervix, womb, vagina and vulva
• cancers involving the digestive system such as the gullet (oesophagus), stomach, liver, pancreas, gallbladder and anus
• head and neck cancers such as those affecting the mouth, throat and nasal passages
• cancers that affect the lungs (other than lung cancer) such as cancer of the trachea, and mesothelioma
• cancers that affect the muscles, bones, tendons and ligaments (sarcomas).

We have more information about some of these types of cancer in our A-Z list. We have also linked to some rare cancer types at the bottom of this page.

There are many reasons why a cancer type is rare. It could be for one of the following reasons:

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 cancer type.

But in some cases, treatment is different. You may be referred to another MDT with experience of that subtype. This might be at a specialist centre. 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 (staging and grading)
• your general health
• national treatment guidelines for the cancer (if available).

Cancer experts write national treatment guidelines 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. They make decisions together and this will be added to your medical notes. Your specialist will then discuss the options with you so you can make decisions about your treatment and care.

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

A second opinion is an opinion from a different doctor about your diagnosis or treatment. If you think you want a second opinion, talk to your specialist or GP first. Tell them your concerns or 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. You may have to travel to another hospital and it could delay your treatment.

You may need to travel to a different hospital to see doctors 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. This is your keyworker or clinical nurse specialist (CNS). Ask if you are not sure who this is or how you contact them.

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 also order our Macmillan organiser.

Clinical trials are medical research studies involving people. This type of research helps doctors find what treatments work best for people with rare cancers. There are not as many trials for rarer cancers because it can be hard to find enough people to take part. Sometimes doctors will do a clinical trial involving people with different types of less common or rare cancers, if the cancers have something in common.

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 is not available anywhere else. Or it might be a new way of giving an existing treatment.

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

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 specialist and healthcare team are telling you. This means you can give consent.

Knowing more about the cancer type 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 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 healthcare team at the hospital. They know your situation and can tell you about plans for treatment. They can help with emotional support and contact people who can help with any practical issues.

We have information about many types of rare cancers. If you cannot find what you are looking for, you can also call our specialists on the Macmillan Support Line for free on 0808 808 00 00, every day from 8am to 8pm.

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:

• coping with signs or symptoms
• how to deal with work or money worries
• how to talk with family and friends about the cancer.

There are patient organisations for many types of rare cancer. They can offer useful information and support. Patient organisations often know about new treatments and clinical trials. They may have contact with the leading specialists in the UK for that type of cancer.

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 some rare cancers.

Your healthcare team can tell you if there is a patient organisation for the type of cancer you have.

The internet can offer good-quality, evidence-based information. But there are also many sites with unreliable and misleading information (misinformation). There may not be much online information about rarer types of cancer.

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

• Look for websites of patient organisations and well-known charities.
• Look for sites which end with .org (not-for-profit organisations) or .gov (run by the government).
• If you find the same information on several websites, it is more likely that the information is correct. But it is worth checking with your healthcare team.

Be careful if the website is trying to sell products or treatments. You should check with your healthcare team to see if it is right for your situation.

Our A-Z of cancer types has information about some rare cancer types.

• RareCan is an organisation supporting people with less common and rare types of cancer. It also collects information to improve research into new tests and treatments for rare cancers. You can get help finding clinical trials that might be suitable.
• Orphanet offers information on rare conditions, including cancers. This includes possible treatments, 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 a partnership of over 100 patient organisations for rare and less common cancers in the UK. It offers a list of organisations by cancer type.
• Rare Cancer Support Forum is an organisation for people to share personal experiences and get information about treatment and support.
• EURACAN is an organisation that connects people with rare cancers to healthcare centres across Europe.