There are an average of 107 cases of DDLS diagnosed every year in England.

DDLS makes up just under a quarter of all liposarcoma diagnoses.

Although DDLS can affect anyone of any age, the median age at diagnosis is 68 years old.

DDLS tends to affect more males than females.

For more information on these statistics, you can visit our soft tissue sarcoma data hub.

Symptoms of liposarcoma can vary depending on the size and location of your tumour.

The main symptom of liposarcoma is a lump or swelling, often on the arm, leg or torso.

Liposarcoma that forms in the arms and legs can cause:

• A lump that grows persistently
• Swelling or numbness in the area around your lump
• Weakness of the affected arm or leg

Liposarcoma that forms in the torso (intra-abdominal or retroperitoneal) can cause:

• Stomach pain or cramping
• Gradually increasing tummy (abdomen)

Liposarcomas are usually found by a patient when a lump appears on the arms, legs, or torso. They can also be found during an investigation of other symptoms or during a routine operation.

A diagnosis of liposarcoma may start with a visit to your GP, who will examine you and then refer you to a specialist doctor. A specialist doctor will diagnose sarcoma through a series of tests. These may include:

• Physical examination – looking at and feeling any lump
• A scan – taking pictures of the inside of the body
• A biopsy – taking and testing a tissue sample

Surgery is the main treatment used for liposarcoma, sometimes with additional radiotherapy or chemotherapy. The surgeon will remove the tumour and will aim to take out an area of normal tissue around it too; this is known as taking a margin. It allows any cancer cells that are not visible to the naked eye to be removed along with the tumour, which can reduce the risk of the cancer coming back. In rare cases, surgical amputation may be performed.

Surgery is the most common and most reliable option for treatment of DDLS.

Radiotherapy in sometimes used in patients with margins of less than 10mm after surgical resection.

It’s not clear yet how suitable chemotherapy is as a treatment for DDLS, but an ongoing clinical trial is investigating this.

After treatment, you will have regular follow-up appointments for several years. You should receive a follow-up schedule from your sarcoma clinical nurse specialist. The usual practice will include:

• A chance to discuss symptoms
• An examination to look for any signs of the sarcoma returning. This may include an MRI or ultrasound if required after examination
• A chest x-ray to rule out any secondary cancers occurring in the lungs

Sarcoma cancer can reappear in the same area after the treatment of a previous tumour; this is called a local recurrence.

If the cancer does reappear, it is important to get treated as quickly as possible. This could involve further surgery and/or radiotherapy; your treatment will be assessed on an individual basis. It is useful to check for recurrences yourself through self-examination: your doctor or sarcoma clinical nurse specialist can tell you what to look for.

If you are worried about your cancer returning contact your doctor or nurse; they may decide to bring forward the date of your follow up appointment to investigate your concerns.

What if my cancer spreads to another part of my body?

A recurrence of sarcoma may be accompanied by cancer in other parts of the body. This is called metastasis or secondary cancer. Some people are diagnosed with sarcoma because their metastases have been discovered before their primary sarcoma tumour. In sarcoma patients, these secondary cancers may appear in the lungs, which is why a chest x-ray is taken at follow-up appointments.

Secondary cancers may also appear in the liver or brain. Treatment for secondary cancer may involve surgery, radiotherapy or chemotherapy as appropriate; your treatment will be assessed on an individual basis.

If you or a loved one has been diagnosed with sarcoma, you may be feeling scared and uncertain about the future. However, it’s important to remember that there is hope, and that many people with sarcoma are able to live long, fulfilling lives after their diagnosis.

Survival depends on a number of different factors. Doctors usually use large sets of data to determine the outlook for a particular type of cancer. However, sarcoma is rare, which means survival is harder to estimate than for other, more common cancers.

Here are some survival statistics for dedifferentiated liposarcoma:

• 80% of people diagnosed with dedifferentiated liposarcoma in England survive their disease for one year or more (2013-2017).
• 66% of people diagnosed with dedifferentiated liposarcoma in England survive their disease for five years or more (2013-2017).

It’s important to keep in mind that survival rates are just one factor to consider when it comes to your prognosis. Your individual prognosis will depend on many factors, including your age, overall health, and the stage and grade of your cancer.

About these statistics

The terms 1 year survival and 5 year survival don’t mean that you will only live for 1 or 5 years.

The Office for National Statistics (ONS) and researchers collect information. They watch what happens to people with cancer in the years after their diagnosis. 5 years is a common time point to measure survival. But some people live much longer than this.

5 year survival is the number of people who have not died from their cancer within 5 years after diagnosis.