Cancer researcher in lab

Rare cancers

Having a rare cancer can be hard to cope with.

Although you might feel isolated, you’re not alone. We’re here for you and have information about help and support available. 

Having a rare cancer can be hard to cope with:

  • It may take longer to diagnose a rare cancer.  
  • There may be less information available about your type of cancer.
  • You’re less likely to meet another person with the same type of cancer, which may make you feel isolated. 

Although you might feel isolated, you’re not alone. We’re here for you and have information about help and support available. 

What are rare cancers?

There are over 200 different types of cancer. To count how often a cancer happens it is measured by how many cases there are in a year on average per 100,000 people. For example, there were 230 new cases of non-melanoma skin cancer per 100,000 people in Ireland in 2015.

Cancer is called rare when the amount of people who are diagnosed with it is equal to or less than 6 new cases per 100,000 persons in one year. Around 1 in 5 cancers diagnosed in Europe is rare.

Subtypes

Sometimes rare cancers are a type of more common cancer (called a subtype). For example T-cell lymphoma is a rare subtype of Non-Hodgkin Lymphoma so information on Non-Hodgkin Lymphoma is relevant to you because that is your diagnosis but you may find it difficult to get information on T-cell lymphoma.

If you have a rare subtype, ask your medical team where to find more information or call our Support Line on Freephone 1800 200 700. 

Diagnosing rare cancers

It may take longer to diagnose a rare cancer. This can be frustrating and distressing. Diagnosis may take longer because your symptoms are not as well known or because the symptoms you have are usually caused by other, more common conditions. This means a rare cancer may not be suspected. You may need many tests or specialised tests before your cancer is diagnosed.  We have more information on cancer tests.

Coping with a rare cancer diagnosis

Getting information
Your medical team will be there to support you and give you information about your diagnosis and treatment, but it may be harder to find information on your cancer yourself, so make the most of your appointments and don’t be afraid to ask questions. We have advice on getting the most from your doctor’s appointments

If your cancer is very rare, your doctor may talk to other experts in other countries so that they can provide you with the best care available. This is normal, so don’t worry if your doctor says that they need to do this.

Your doctor might also suggest a second opinion, or you can ask for one. We have advice on getting a second opinion.

Feeling isolated
If you have a rare cancer, you’re less likely to meet another person with the same diagnosis, which may leave you feeling isolated. 

Although you might feel isolated, you’re not alone. We’re here for you and have information about help and support available. 

Getting support if you have a rare cancer

Many people with cancer face similar challenges in coping with their emotions, dealing with side-effects and managing practical issues, so whatever your diagnosis, you may find it helpful use the support services available. 

Where to get support

  • Our cancer nurses are here if you need advice, information or just want to talk. They can also help you to find support, including free counselling. Call our Support line on Freephone 1800 200 700 or visit a Daffodil Centre. You can email our nurses at supportline@irishcancer.ie
  • Other people going through cancer may not have the same type as you, but they can still offer you company, advice and support as you go through treatment and beyond. Join our online community here: www.cancer.ie/community or join a group activity at your local cancer support centre. 
  • Local cancer support centres have lots of services to help you, whatever your cancer type. For example, free one-to-one counselling, exercise classes and complementary therapies like mindfulness. People who use the support centres often say one of the main benefits is the company, support and advice from other people, whatever their cancer diagnosis. 

See our coping with cancer section. It includes information on talking about your diagnosis, coping with your emotions, dealing with side-effects and managing work and money.

Help with travel

If you have a rare cancer, you may need to travel to a specialist hospital for treatment. This may be quite a long way from home. We may be able to support you through our transport programmes. See more about our patient travel services.

If your consultant recommends treatment for your rare cancer that is not currently available in Ireland, the treatment may be obtained abroad via the Treatment Abroad Scheme. This scheme is available to those ordinarily resident in Ireland. The amount of treatment covered varies, queries can be directed to the Treatment Abroad Scheme office on phone number 056 778 4548.

Types of rare cancers

Cancer Research UK provide cancer information on a large variety of rare cancers. We are grateful to Cancer Research UK for allowing us to link to their website. 

Their information on support and services are UK specific but their information on cancer types is relevant to an Irish audience. If your cancer type is not listed here, please contact our cancer nurses for more information on Freephone 1800 200 700 or email supportline@irishcancer.ie 

When you click on the links below, you will leave this page and a new window will open with information from Cancer Research UK.

  • Our cancer nurses can help you to find information and support. Call our Support Line on Freephone 1800 200 700 or visit a Daffodil Centre. You can email the nurses at supportline@irishcancer.ie
  • Other people going through cancer may not have the same type as you, but they can still offer you support as you go through treatment and beyond. Join our online community here:

     www.cancer.ie/community

  • Local cancer support centres have lots of services to help you, whatever your cancer type. For example, free one-to-one counselling, exercise classes and complementary therapies like mindfulness. 
Cancer statistics in Ireland

The National Cancer Registry of Ireland (NCRI) collects information on cancer incidence, treatment and survival on Ireland.

The NCRI publishes a range of factsheets and statistical information about cancer in Ireland which may be of interest to you.

Online Community Support

Looking for support?

Our cancer support section contains information and advice on coping with cancer for diagnosed patients and their loved ones.

For more information

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1800 200 700

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