Having a rare cancer can be hard to cope with:
- It may take longer 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. Some are more common than others.
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.
Getting support if you have a rare cancer
- Your medical team will be there to support you and give you information. Don’t be afraid to ask questions. Ask for a phone number and email address for the nurses in case you have any questions.
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 practice so don’t worry if your doctor says that they need to do this.
- Our cancer nurses can help you to find information and support. Call our Cancer Nurseline on 1800 200 700 or visit a Daffodil Centre. You can email the nurses at firstname.lastname@example.org
- 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:
- 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.
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.
Online Community Support
For more information
1800 200 700