Your referral explained

This information is for people who have not yet been diagnosed with sarcoma but have been referred to a specialist centre or team.

If your doctor thinks you might have sarcoma, they will refer you to a specialist team who can give you the right diagnosis.

Sarcoma is a rare type of soft tissue or bone cancer. It can happen anywhere in the body within muscle, bone, nerves, cartilage, tendons, blood vessels, and fatty or fibrous tissue.

What does this referral mean?

You might have had a scan which has shown that you may have sarcoma. Sometimes you might receive a letter from the hospital or your GP referring you to a sarcoma specialist team or centre.

You might feel worried ahead of your results. However, it might be helpful to know that most lumps and bumps are not cancerous (sometimes referred to as benign). Only a small number of people referred to sarcoma specialist centres are diagnosed with sarcoma.

It’s more common to have:

• a lipoma, which is a lump made up of fatty tissue
• a cyst, which is a lump filled with fluid.

It can be hard to tell if a lipoma or cyst is something more serious. You will have other tests if your doctors are unsure.

Referral timelines

In England, you should have an appointment within 2 weeks of the referral date.

In Wales, Scotland, and Northern Ireland, the timeline is not specific, but you should be seen as quickly as possible.

Investigations and tests

The specialist team will carry out scans and tests to see if you have sarcoma.

You might have:

• an X-ray
• an ultrasound scan
• a physical examination
• a CT scan
• an MRI scan
• a core needle biopsy.

Waiting for your results

It might take a few weeks to find out your results. A team of experts called a multidisciplinary team (MDT) will look at your results and work out the diagnosis. After this, you will get the results.

You might feel anxious while waiting for the results. Ask your doctor or specialist nurse how long it will take to get your results and for regular updates.

If you’re worried, you can call the Sarcoma UK Support Line. We can help you if you’re feeling nervous about your test results. You can also contact your GP if your symptoms get worse.

If you do not have sarcoma

If your results show that you do not have sarcoma, you will be discharged from the sarcoma specialist centre. If your symptoms change or become painful, you should go back to your GP.

You may also be referred to a local hospital to remove a lump that is non-cancerous.

If you do have sarcoma

If your results show that you do have sarcoma, the sarcoma specialist team will plan the right treatment and care. Some non-cancerous tumours, like desmoid fibromatosis and giant cell tumours of the bone, are also treated by sarcoma teams.

Your MDT will include:

• an oncologist (cancer doctor)
• a surgeon
• a radiologist
• a clinical nurse specialist (CNS) or keyworker.

If you have questions about your sarcoma referral, speak to your clinical nurse specialist or contact the Sarcoma UK Support Line.

We also have lots of information about the different types of sarcoma.