Rare cancers - Macmillan Cancer Support (2024)

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.

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.

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.

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 opinionmay also mean a delay in your treatment.

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 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. 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.

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?