Malignant peripheral nerve sheath tumour (MPNST)
Malignant peripheral nerve sheath tumour (MPNST) is rare. We have information and advice to help you cope with a rare cancer.
About malignant peripheral nerve sheath tumour (MPNST)
Malignant peripheral nerve sheath tumour (MPNST) is a type of cancer that begins in the layer (nerve sheath) that covers the peripheral nerves. Peripheral nerves send messages between the brain and spinal cord and the rest of the body.
We have advice on coping with a rare cancer and can support you before, during and after treatment.
Information on malignant peripheral nerve sheath tumour (MPNST)
We are grateful to Cancer Research UK (CRUK) for allowing us to link to their website, which has information on many rare cancers.
The cancer information is relevant to an Irish audience, but information on support and services is UK specific. Our cancer nurses can advise you about Irish supports and services. Call the nurses on Freephone 1800 200 700, visit a Daffodil Centre or email supportline@irishcancer.ie
Getting support if you have a rare cancer
If you have a rare cancer, you’re less likely to meet another person with the same diagnosis, which may leave you feeling isolated. But people with cancer often face similar challenges in:
- Coping with their emotions
- Dealing with treatment and side-effects
- Managing practical issues.
So whatever your diagnosis, you might 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
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.
Other people going through cancer may not have the same cancer 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. People who use the support centres say one of the main benefits is company, support and advice from other people, whatever their cancer diagnosis.
Coping with a rare cancer
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. This can be frustrating and distressing.
Your medical team will 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.
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. It may be easy to find information on non-Hodgkin Lymphoma, 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.
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 Service.
If your consultant recommends treatment that is not currently available in Ireland, the treatment may be given abroad via the Treatment Abroad Scheme. Ask your medical team about the Scheme or contact the Travel Abroad Scheme office on 056 778 4548.
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.
Related links
Talk to a Cancer Nurse
Support Line
Our Daffodil Centres
