Rare cancers

There are hundreds of different types of cancer, and some are more common than others. Many of them also have subtypes. Lung cancer and breast cancer, for example, each come in several different types.

Doctors group cancers as common, less common or rare.

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. Out of 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 cancers.

Out of every 100 people diagnosed with cancer each year in the UK, about 47 (47%) have a less common or rare cancer. Around 23 of those people have a less common cancer type.

Many different cancers fall into the less common group, including:

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

But even within the less common cancers, there are subtypes that can be called rare.

Rare cancers are more common than the name suggests. 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 are diagnosed with it each year.

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

Cancers often start in certain types of cells, like skin cells or the cells that line organs. A cancer might be rare because it started in a different type of cell, like a bone cell.

Melanoma is a type of skin cancer and is the 5th most common cancer in the UK. But melanoma that starts in the eye (ocular melanoma) is rare.

Non-Hodgkin lymphoma (NHL) is one of the 10 most common types of cancer. But NHL has many sub-types, and some of these are rare.

Cancer only affects a very small number of children, teenagers and young adults. So any cancer diagnosed in someone young is usually a rare cancer.

Rare cancers sometimes take longer to diagnose, and there are a few reasons for this.

Some of the more common cancers, such as breast, cervical and bowel cancer, can be picked up by screening. That means some people are diagnosed before they have any symptoms. Doctors also see the symptoms of common cancers more often, so they're more aware of them.

There are guidelines that help doctors decide whether symptoms might be caused by cancer. They explain when to refer people for tests or to a specialist doctor, and how quickly this should happen. The risk of cancer can be higher as you get older, so the guidelines may differ depending on a person's age.

Cancer in young people is more unusual. There's usually a more likely explanation for their symptoms, so it may take longer to diagnose cancer in a child, teenager or young adult.

If the doctor thinks your symptoms could be caused by cancer, they'll refer you to a specialist. The specialist might organise some tests. They should talk to you about why you need these tests and what they involve. You need to understand this, because you have to give consent to have the tests.

You may have lots of questions for the team supporting your care.

Depending on the symptom, some hospitals run clinics where you can have all the tests on the same day. Other tests may need to be done on different days or at different departments or hospitals.

You don't usually get test results on the day. Some results take longer than others. Scan results, for example, may take longer because doctors need to study the scans carefully and write a report.

Some tests need to happen at specialist centres or cancer hospitals.

Ask whether your results will come by letter, by telephone call, or whether you'll need to go back to the hospital to see the specialist. This depends on how many tests you need and how long the results take. It's good to know, so you're prepared for the wait. Waiting for tests and results can be difficult.

You should be given a telephone number to call if you have any questions or concerns. It might be the department where you have the tests, or it might be a specialist nurse. Ask before you leave, so you know who to call if you need to.

Your doctors may be able to answer some of your questions. But if you have unusual or unexpected symptoms, or if they suspect a rarer cancer, there may be things they don't know at that time. They may need to refer you to other specialists or hospitals, and it might take time before they can give you all the information.

Cancer treatment is usually planned by a team of specialists who work together. This is called a multidisciplinary team (MDT), and its members have expert knowledge and experience of cancer.

The MDT meets regularly. Your cancer doctor or specialist nurse then talks through the treatment plan with you.

There are different MDTs for different types of cancer. Some rare cancers are subtypes of more common cancers, and these rare subtypes are often treated in a similar way to the more common type. The MDT for that cancer type usually manages them.

In some cases, though, treatment is different. You may be referred to another MDT with experience of that subtype, perhaps 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. Some rare cancers have guidelines, but not all do, especially the very rare ones.

If there are no guidelines, the MDT will use the best evidence available to help plan your treatment. They make decisions together, and this is added to your medical notes. Your specialist will then go through the options with you so you can make decisions about your treatment and care.

Macmillan Cancer Support has information about different types of cancer treatments. It also has more information about each cancer type.

A second opinion means asking a different doctor for their view on your diagnosis or treatment. If you think you'd like one, speak to your specialist or doctor first. Tell them what worries you, or ask them to explain anything you haven't understood.

If you still want a second opinion after that, you can ask them to arrange it. They are usually happy to do so. It will usually mean seeing another specialist at a different hospital, so you may have to travel, and it could delay your treatment.

You may have to travel to a different hospital to see doctors who have more experience with the type of cancer you have. You may have your treatment at that hospital too.

But the treatment for some rare cancers is the same as the treatment used for more common cancers. In that case, your treatment may be planned at one hospital and given at a hospital closer to your home.

You should know who to contact if you have questions about your care or your appointments. There is usually someone who co-ordinates your care. This person is your keyworker or clinical nurse specialist (CNS). If you're not sure who this is, or how to reach them, ask.

It may help to keep a record of your treatment and appointments. Or you could ask a friend or family member to help you with this.

Asking questions can make it easier to cope while you are being diagnosed and treated. It helps you feel more involved in your care, and it can help you make decisions too.

You may want to write down a list of questions before you go. Don't worry about asking them all at once, because you'll have other chances. It's also okay to ask the same question again. What matters most is that you understand what your specialist and the rest of your team are telling you. That way you can give consent.

It's natural to have many different feelings after a cancer diagnosis. But if you have a rare cancer, you may face some extra challenges as well.

The uncertainty can feel heavier with a rare cancer. There's often less information available about rare cancers, so it can be harder for doctors to answer your questions or tell you what may happen.

Many people with cancer feel isolated, and a rare cancer can make this even harder. You may have to travel to a hospital far from home for treatment, which can mean time away from the people who usually support you.

The cancer you have may also be treated differently from common cancers. You may feel your family and friends don't understand what you're coping with.

Talking to people who have the same type of cancer can help, and it may make you feel less alone. But when the cancer is rare, it can be difficult to meet others who have it.

Your cancer team can be a real source of support. Tell them how you're feeling and what you're finding difficult. If you need specialist help, they can refer you to a psychologist or counsellor.

Focusing on what you can control is one way to manage the uncertainty. Try to concentrate on what you can influence and do now. You could:

• talk about what's happening and how you feel
• get support
• get involved in your care
• follow advice from your cancer team
• focus on your health and wellbeing
• ask for help to cope with difficult feelings

You may feel you need to look like you're coping with everything to protect other people's feelings. But people close to you usually want to know how you really feel, so that they can help and support you. They may find it easier to talk about their own feelings if you can talk openly.

Talking about your feelings may:

• stop you going over things in your mind all the time
• help you understand your feelings
• make you feel more in control
• allow you to work out what might help
• make you feel closer to the people you talk to

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 doctor. They can arrange extra support for you.

You can ask your cancer team if there's 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.

Macmillan Cancer Support also has further information to support you. You can:

• phone the Macmillan Support Line on 0808 808 00 00
• chat to Macmillan specialists online
• use the Macmillan rare cancer forum, where you can talk to others affected by a rare cancer type, ask questions and share your experience

Writing down what's happening can help you put your feelings into words. Many people find it gives them a sense of control. Some people write blogs about their experiences during and after cancer treatment.

A diary or journal may help you work through problems. Try to include the things that have been positive or helpful, and the things you find difficult too.

When you read back what you've written, you may become more aware of your thoughts and feelings. It can also show you what you find hardest, and what has helped you cope.

Life can feel difficult when you're anxious. You may start avoiding friends, family and social situations, and this can leave you feeling isolated and low in mood. If these feelings don't improve, or they get worse, it may mean you're depressed.

Sometimes it's hard to know if you're depressed. It can also be hard to admit it and to talk about it. Other people may notice and suggest that you need help.

If you think you have anxiety or depression, or someone close to you thinks so, there's help available. You can speak to your doctor or the specialist cancer team at the hospital. They'll listen and offer advice, or refer you to a counsellor or psychologist. Your doctor may be able to give medicine to help.

There are also organisations that can offer support.

Knowing more about your cancer type and its treatment can help you cope. With a rare cancer, though, finding information can be difficult.

You may want to know as much as you can so you can make the best decisions. You may also need information and support to manage any symptoms you have, and to cope with practical matters like work and money.

Talk to your healthcare team at the hospital first. They know your situation and can tell you about the plans for your treatment. They can help with emotional support too, and put you in touch with people who can help with practical issues.

Macmillan Cancer Support also has information about many types of rare cancers. If you can't find what you're looking for, you can speak to a specialist on the Macmillan Support Line. The number is 0808 808 00 00, it's free to call, and the line is open every day from 8am to 8pm.

Even if there isn't much information about your particular type of cancer, general information can still help. Macmillan Cancer Support has 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

The internet can have good, evidence-based information about cancer. But many sites carry unreliable or misleading information (misinformation), and for rarer types of cancer there may not be much online at all.

There are a few ways to find reliable information about rare cancers. You could look for:

• websites of patient organisations and well-known charities
• sites that end with .org (not-for-profit organisations) or .gov (run by the government)

If the same information appears on several websites, it's more likely to be correct. Even so, it's worth checking with your doctors and nurses.

Be careful if a website is trying to sell products or treatments. Check with your doctors and nurses to see whether it's right for your situation.