Dedifferentiated liposarcoma | Sarcoma UK
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Dedifferentiated liposarcoma

This page explains dedifferentiated liposarcoma (DDLS). It includes information about symptoms, diagnosis and treatment, as well as where to get more support.   

 

What is DDLS?

 

DDLS is a type of cancer called liposarcoma. DDLS often starts as a well-differentiated liposarcoma (WDLS) but changes into a faster-growing form.  

DDLS is most often found in the tummy or the area behind the tummy called the retroperitoneum, but it can also be found in the arms or legs.

 

Signs and symptoms 

 

Symptoms of DDLS depend on where the lump is found in the body and how large the lump is.  

If DDLS is found in an arm or leg, you may notice: 

  • a painless lump in your arm or leg 
  • a lump that is getting bigger or changing.

If DDLS is found in the tummy, you may notice: 

  • discomfort, cramping, or pain in the tummy area 
  • feeling sick 
  • constipation, diarrhoea, or a bloated tummy. 

 

Diagnosing DDLS 

 

If you find a lump, your GP will examine you and may refer you to a specialist team. This team will use different scans and tests to see if you have DDLS. 

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 the different types of scans and tests used to diagnose sarcoma. 

A team of experts called a multidisciplinary team (MDT) will look at your results and work out the diagnosis.  

 

Treating DDLS 

 

There are a few different treatment options for DDLS. You and your MDT will discuss these options before starting any treatment. 

Surgery for DDLS

Surgery is the main treatment for DDLS. The surgeon removes the lump and some normal tissue around it. This is called taking a margin and helps lower the chance of the lump coming back. 

If you have DDLS in one of your arms or legs, the surgeon will try to remove the lump without damaging or removing your arm or leg.  

In rare cases, the surgeon may recommend removing your arm or leg (amputation). This is usually only done if the lump cannot be removed safely or if sarcoma has come back. 

Our rehabilitation hub has more information about different types of surgeries, how to prepare for surgery, and getting back to everyday life. 

Radiotherapy for DDLS

Radiotherapy uses high-energy radiation beams to destroy cancer cells.

If you’ve been diagnosed with DDLS, you may be offered radiotherapy before surgery. This is to shrink the lump, making it easier to remove during surgery. In some cases, you may have radiotherapy after surgery, to kill any sarcoma cells that may have been left behind. This is common if: 

  • the lump is large 
  • it is close to important blood vessels or nerves 
  • the surgeon could not remove the entire lump. 

Chemotherapy for DDLS

Chemotherapy is a medicine that kills cancer cells.

You might have chemotherapy to shrink the lump or after surgery to lower the risk of it coming back. 

You may also have chemotherapy if sarcoma has spread to other parts of your body or if your lump cannot be removed by surgery. 

After treatment

 

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

  • scans and tests to check for any new lumps or signs of DDLS returning 
  • a chance to talk about any symptoms you might have. 

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

 

Recurrence 

 

DDLS can sometimes come back in the same area. This is called 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 DDLS comes back, it may have spread to another part of the body. This is called metastasis and is sometimes called a secondary sarcoma. 

Secondary sarcomas in DDLS can appear anywhere but are most common in the lungs. You may have chest scans at follow-up appointments to check for this.  

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

Living with DDLS   

Living with cancer can be difficult. 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 DDLS, or if you need to talk to someone, ourSupport Lineteam are here for you. 

More support

 

Call the Sarcoma UK Support Line

The Sarcoma UK Support Line is here for every person affected by sarcoma. Get in touch for friendly, expert, confidential and free advice on anything to do with sarcoma.    

Support groups

There are a number of sarcoma support groups across the UK. We have more information about support groups available online and in your local area. 

Order our liposarcoma booklet

Our booklet includes more information about liposarcoma. Order our liposarcoma information booklet on our shop, for free.   

Other charities

  • Maggie’s: Maggie’s is a charity that offers advice and support for adults and young people living with cancer.
  • Penny Brohn: Penny Brohn has a lot of support for people who have just been diagnosed or are living with cancer. This includes resources, online sessions, and counselling. 
  • Shine Cancer Support: Shine Cancer Support is a charity connecting people with experience of cancer together. This is through online programmes and in-person support groups. They support people in their 20’s, 30’s, and 40’s. 
  • Macmillan: Macmillan Cancer Support have a lot of information about cancer diagnosis, treatment, and after treatment. 

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