Rare cancers
Rare cancers
Overview
- What are rare cancers?
- Diagnosing and treating rare cancers
- Treatment for rare cancer
- Coping with a rare cancer
- Getting information
What are 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.
Talking about your 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 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 you 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 GP. 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 – you can talk to others affected by a rare cancer type, ask questions and share your experience
Writing about your feelings
Writing about what’s 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 understand what you find most difficult and what has helped you to cope.
Knowing when you need more help
Life can feel difficult when you’re anxious. You may start avoiding your friends, family and social situations. This can lead to 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 difficult to know if you’re depressed. It can also be hard to admit you’re depressed and to talk about it. Other people may notice and suggest you might need help.
If you think, or someone close to you thinks, you have anxiety or depression, there’s help available. You can speak to your GP or 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 medication to help.
Macmillan Cancer Support have more information about coping with cancer and depression and anxiety. There are also organisations that can help.
Getting information
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, like work and money.
Talk to your healthcare team at the hospital first. 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.
Macmillan Cancer Support also have information about many types of rare cancers. If you can’t find what you’re looking for, you can also speak to a specialist on the Macmillan Support Line. Phone 0808 808 00 00 for free, every day from 8am to 8pm.
Even if there’s not a lot of information about the type of cancer you have, general information can still help. Macmillan Cancer Support 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
Patient organisations
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. Macmillan’s Online Community has groups for some rare cancers.
Your healthcare team can tell you if there’s a patient organisation for the type of cancer you have.
Looking for rare cancer information online
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.
There are some tips for finding reliable information about rare cancer types. 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 you find the same information on several websites, it’s more likely that the information is correct. But it’s 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’s right for your situation.
Helpful websites for rare cancers
There are other organisations who offer information and support.
RareCan
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
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’re searching for information.
Cancer52
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.
EURACAN
EURACAN is an organisation that connects people with rare cancers to healthcare centres across Europe.
Don’t include personal information e.g. name, location or any personal health conditions.
Common Symptoms
Symptom information is not available for this condition yet.
⚠️ This symptom list is for educational purposes. Having these symptoms does not mean you have this condition. See a doctor for proper diagnosis.
Medicines Commonly Used
⚠️ These medicines are commonly used for confirmed diagnoses of this condition. This is NOT a recommendation or prescription. Treatment must be determined by your doctor.
No medicines have been linked to this condition yet.
Diagnosis
Percentage of cancer diagnoses per year
Common cancers
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.
Less common cancers
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.
Rare cancers
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 that are 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 – like the ovaries, cervix, womb, vagina and vulva
- cancers involving the digestive system – like the gullet (oesophagus), stomach, liver, pancreas, gallbladder and anus
- head and neck cancers – like those affecting the mouth, throat and nasal passages
- cancers that affect the lungs (other than lung cancer) – like cancer of the trachea, and mesothelioma
- cancers that affect the muscles, bones, tendons and ligaments (sarcomas)
Macmillan Cancer Support have more information about some of these types of cancer in their A to Z list.
Why a cancer type might be rare
There are many reasons why a cancer type is rare. It could be for one of the following reasons.
Often cancers start in certain types of cells, like skin cells or cells found in the lining of 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 there are many sub-types of NHL 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.
Diagnosing and treating rare cancers
Rare cancers sometimes take longer to diagnose.
Some more common cancers have screening programmes like breast, cervical or bowel cancer. This means some people are diagnosed before they have symptoms.
Doctors see the symptoms of common cancers more often, so they’re more aware of them.
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.
The risk of cancer can be higher as you get older so these guidelines may be different depending on a person’s age.
Cancer in young people is more unusual. There’s usually a more likely explanation for their symptoms. This means it may take longer to diagnose cancer in a child, teenager or young adult.
Treatment
Treatment for rare cancer
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’re 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 isn’t 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.
Macmillan Cancer Support have information about different types of cancer treatments. They also have more information about each cancer type.
Second opinion
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 don’t 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.
Specialist cancer centres
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’s 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’re 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.
Clinical trials
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 isn’t 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.
Macmillan Cancer Support have more information about taking part in a cancer clinical trial.
Questions for your healthcare team
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. Don’t worry about asking all your questions at once. You’ll have other chances to ask them.
It’s 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.
Coping with a rare cancer
It’s natural to have many different feelings after a cancer diagnosis. But if you have a rare cancer, you may also have other challenges.
The feeling of uncertainty can be greater with a rare cancer. There’s often 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 difficult. 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 don’t understand what you’re 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 it’s rare.
Coping with difficult feelings
Your cancer team can be an important source of support. Tell them how you’re feeling and if there are things you’re finding difficult. 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. 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