Understanding sarcoma

Sarcomas are rare cancers that develop in the muscle, bone, nerves, cartilage, tendons, blood vessels and the fatty and fibrous tissues. 

They can affect almost any part of the body, on the inside or the outside. 

Sarcomas commonly affect the arms, legs and trunk. They also appear in the stomach and intestines as well as behind the abdomen (retroperitoneal sarcomas) and the female reproductive system (gynaecological sarcomas).

  • Bone sarcomas affect less than 500 people in the UK each year, making it a very rare form of cancer. Not all bone cancers will be sarcomas.
  • Soft tissue sarcomas can affect any part of the body; they develop in supporting or connective tissue such as the muscle, nerves, fatty tissue, and blood vessels.  Soft tissue sarcomas include:
    • GIST is a common type of sarcoma; it develops in the gastrointestinal (GI) tract, a long tube running through the body from the oesophagus (gullet) to the anus (back passage) and includes the stomach and intestines.
    • Gynaecological sarcomas (sometimes shortened to gynae sarcomas) occur in the female reproductive system: the uterus (womb), ovaries, vagina, vulva and fallopian tubes. You may also hear the term uterine sarcoma. They can affect women of any age.
    • Retroperitoneal sarcomas occur in the retroperitoneum. This is an area behind the peritoneum, the lining of the abdominal space that covers the abdominal organs. The retroperitoneum is deep in the abdomen and pelvis, behind the abdominal lining, where organs such as the major blood vessels, kidneys, pancreas and bladder are located.

Sarcoma is very rare, and much more research needs to be done to fully understand how these cancers develop and how best to diagnose and treat them.

People can survive sarcoma if their cancer is diagnosed early, when treatments can be effective and before the sarcoma has spread to other parts of the body.  It is vital that patients be referred to a specialist sarcoma team as early as possible. 

Facts and figures

  • There are three main types of sarcoma: soft tissue sarcomabone sarcoma and gastrointestinal stromal tumours (GIST)
  • There are around 100 different sub-types of sarcoma 
  • 10 people every day are diagnosed with sarcoma in the UK
  • About 3,800 new cases of sarcoma are diagnosed each year in the UK which makes up approximately 1% of all cancer diagnoses
  • Every year 3,330 people are diagnosed with a soft tissue sarcoma (including GIST)
  • 500 people are diagnosed with a bone sarcoma every year
  • In general, patients with a bone or soft tissue diagnosis tend to be younger than the majority of cancer patients. 16% of bone or soft tissue sarcomas are diagnosed in patients less than thirty years of age, compared to around 2% of all cancers. 37% of bone or soft tissue sarcoma patients are aged less than 50 years.
  • Sarcomas make up 15% of all childhood cancers (0-14 years) and 11% of all cancer diagnoses in teenagers and young people (15-24 years)
  • In Scotland, 180 new cases of sarcoma are diagnosed each year while in Northern Ireland, 100 new cases of sarcoma are diagnosed each year. 

Diagnosing sarcoma

Sarcomas are usually found by a patient when a lump appears on the leg, arm or trunk.

They can also be found during an investigation of other symptoms or during a routine operation.

The earlier sarcoma is diagnosed the better the chances of successful treatment. 

A specialist doctor will diagnose sarcoma through a series of tests. These may include:

  • Clinical examination – looking at and feeling any lump
  • A scan – taking pictures of the inside of the body using ultrasound, x-ray, CT, EUS, PET or MRI
  • A biopsy – taking and testing a tissue sample
  • A bone scan – to investigate primary bone sarcomas

Treating sarcoma

If you have been diagnosed with sarcoma, you should be referred to a specialist sarcoma team for diagnosis and treatment of this kind of cancer.

Your case will be managed by a team of experts from a wide range of health care professions called a multidisciplinary team (MDT).

Your MDT will include your key worker or sarcoma clinical nurse specialist, surgeon and other healthcare professionals involved in your care.

Some people will be treated under other multidisciplinary teams (MDT) depending on the site of the tumour. For example, people with GIST may be treated by gastrointestinal (GI) specialists.

Some treatments, such as radiotherapy, may be delivered in your local hospital.

Your MDT will support you throughout your treatment to ensure you get the right treatment as and when you need it. 

Information from Sarcoma UK for more information visit their website.