Clear cell sarcoma

This page explains clear cell sarcoma (CCS). It includes information about diagnosis and treatment, as well as where to get more support if you’re diagnosed with CCS.  

If you have any questions about CCS or if you need to talk to someone, our Support Line  team are here for you.  

What is CCS?

Clear cell sarcoma (CCS) is a rare type of cancer. It often starts near tendons, which are the cords that join muscles to bones. You might notice a lump in places like your arms, legs, feet or ankles. Sometimes it can appear in other parts of the body too, such as the stomach or intestines. 

Doctors call it CCS because under a microscope, the cells look clear. CCS affects mostly young adults, but it can also happen in children and teenagers. 

It’s important to know that clear cell carcinoma of the kidney is a completely different type of cancer, even though the name sounds similar.

Our soft tissue sarcoma data hub shares numbers on how many people are diagnosed with clear cell sarcoma. 

Symptoms of CCS 

Symptoms of CCS depend on where the lump is growing in the body and how large it is. People often notice: 

• a lump that does not go away 
• pain near the lump 
• losing weight without trying 
• feeling very tired. 

Diagnosing CCS 

If you find a lump yourself, diagnosis of CCS will usually begin with a physical examination by your GP, who may refer you to a specialist team. This team will use different scans and tests to see if you have CCS. 

You might have:  

• a CT scan   
• an MRI scan   
• a core needle biopsy (a small sample of tissue taken with a needle).  

We have more information about different types of scans and tests used to diagnose sarcoma.  

If you’re diagnosed with CCS, a team of experts called a multidisciplinary team (MDT) of sarcoma specialists will look at your results and work with you to plan your treatment. 

Treating CCS 

There are a few different treatment options for CCS. You and your MDT of sarcoma specialists will discuss these options before starting any treatment.  

After treatment

After treatment for CCS, you’ll have regular follow-up appointments for several years. In these appointments, you will have:  

• scans and tests to check for any new lumps or signs of CCS returning  
• a chance to talk about any symptoms you might have 
• a chance to talk about how you’re feeling and any worries you have.  

We know that some people can feel lost when treatment finishes, and that is completely normal. We have more information about living with and beyond sarcoma.  

Recurrence  

CCS can sometimes come back in the same area, known as a recurrence. Follow-up appointments and regular scans will help to monitor recurrence. You can also check for recurrences yourself through self-examination. Your doctor or sarcoma clinical nurse specialist can tell you what to look for.   

We have more information about if sarcoma comes back.   

Metastasis  

If CCS comes back, it may have spread to another part of the body. This is called metastasis and is sometimes called a secondary sarcoma.  

You may have chest scans at follow-up appointments. This is because CCS can sometimes spread to the lungs.  

If your sarcoma has spread to a different part of the body, you may be offered additional treatment like more surgery, radiotherapy, chemotherapy or a clinical trial.  

Living with CCS 

Living with cancer can be hard. We have support to help you with your mental health, physical health, and we also have financial support. No matter what you’re worried about, we’re here to support you.  

If you have any more questions about CCS, or if you need to talk to someone, our Support Line team are here for you.