Word on Health

Word On Sarcoma

Our grateful thanks to Sarcoma UK for their input to our 'on-air' report (which you can hear again via the audio player at the botttom of this page) and for allowing us to reproduce thE support information below supplemented with input from the NHS Direct website.

For more detailed information, help and support click here to visit the Sarcoma UK website - their support line 08088010401 is available from 10am - 3pm Monday to Friday.

Never heard of Sarcoma? You are not alone ! As we reported, awareness of sarcoma is low in the UK. According to a recent YouGov poll three quarters (75%) of people in the UK do not know or are not sure what sarcoma is. Even for those who have heard of sarcoma understanding of its symptoms is poor. Nearly a third (29%) had no idea of what the symptoms of sarcoma are and less than half could identify the key symptoms of a painful lump growing in size (47%) and bone pain (46%).

Sarcomas are uncommon cancers that can affect any part of the body, on the inside or outside, including the muscle, bone, tendons, blood vessels and fatty tissues.

  • 15 people are diagnosed with sarcoma every day in the UK. That’s about 5,300 people a year.
  • There are around 100 different sub-types of sarcoma.

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 about 611 people in the UK each year - 1 in 9 sarcoma diagnoses are bone sarcoma. Not all bone cancers will be sarcomas.

Signs and symptoms of bone cancer. According to NHS Direct Bone cancer can affect any bone, but most cases develop in the long bones of the legs or upper arms. In most cases, it's not known why a person develops bone cancer.

The main symptoms include:

  • persistent bone pain that gets worse over time and continues into the night
  • swelling and redness (inflammation) over a bone, which can make movement difficult if the affected bone is near a joint
  • a noticeable lump over a bone
  • a weak bone that breaks (fractures) more easily than normal
  • problems moving around – for example, walking with a limp

If you or your child are experiencing persistent, severe or worsening bone pain, visit your GP.  While it's highly unlikely to be the result of bone cancer, it does require further investigation.

Some of the main types of bone cancer are:

  • osteosarcoma – the most common type, which mostly affects children and young adults under 20
  • Ewing sarcoma – which most commonly affects people aged between 10 and 20
  • chondrosarcoma – which tends to affect adults aged over 40

Young people can be affected because the rapid growth spurts that occur during puberty may make bone tumours develop.

The above types of bone cancer affect different types of cell. The treatment and outlook will depend on the type of bone cancer the patient has .

Soft tissue sarcomas  are the most common type of sarcoma, around 88% of sarcomas are a type of soft tissue sarcoma.

They can affect any part of the body; they develop in supporting or connective tissue such as the muscle, nerves, fatty tissue, and blood vessels. 

According to NHS Direct Soft tissue sarcomas often have no obvious symptoms in the early stages.

They can cause symptoms as they get bigger or spread. The symptoms depend on where the cancer develops. For example:

  • swelling under the skin may cause a painless lump that cannot easily be moved around and gets bigger over time
  • swelling in the tummy (abdomen) may cause abdominal pain, a persistent feeling of fullness and constipation
  • swelling near the lungs may cause a cough or breathlessness
  • You should see a GP if you have a lump – particularly one that's getting bigger over time. Although it's much more likely you have a non-cancerous condition, such as a cyst (fluid under the skin) or lipoma (fatty lump), it's important to have your symptoms checked.

Types of soft tissue sarcoma. There are many different types of soft tissue sarcoma, depending on where in the body it develops. Examples include:

  • leiomyosarcoma – develops in muscle tissue
  • liposarcoma – develops in fat tissue
  • angiosarcoma – develops in the cells of the blood or lymph glands
  • gastrointestinal stromal tumours (GISTs) – develop in the connective tissues that support the organs of the digestive system
  • 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.

Causes of soft tissue sarcomas.  In most cases there are no obvious reasons why a soft tissue sarcoma develops, but there are a number of things known to increase the risk, including:

  • age – soft tissue sarcomas can happen at any age, including in children, but they're more common in middle-aged or elderly people and your risk increases as you get older
  • certain genetic conditions, such as neurofibromatosis type 1 and retinoblastoma, are associated with an increased risk of soft tissue sarcomas
  • previous radiotherapy – some people who have previously had radiotherapy for another type of cancer develop a soft tissue sarcoma, often many years later
  • exposure to certain chemicals, including vinyl chloride, dioxins and phenoxyacetic herbicides, has been associated with increased rates of soft tissue sarcoma
  • Kaposi's sarcoma is a very rare sarcoma caused by the human herpesvirus 8 (HHV-8) infecting someone with a weakened immune system (such as people with HIV).

More research needs to be done to fully understand how these cancers develop and spread and how best to diagnose and treat them.

Diagnosing soft tissue sarcomas. According to NHS Direct if your GP feels there's a possibility you have soft tissue sarcoma, they'll refer you for a number of tests.

  • A diagnosis of a soft tissue sarcoma will usually be made by a hospital specialist and will be based on your symptoms, a physical examination, and the results of:
  • scans – an ultrasound scan is usually the first test done and is fairly simple and quick. Further scans, such as an MRI scan, may be done later
  • a biopsy – where a sample of suspected cancerous tissue is removed, using a needle or during an operation, so it can be analysed in a laboratory

If a diagnosis of soft tissue sarcoma is confirmed, these and further tests will also help determine how likely the cancer is to spread (known as the "grade"), and whether or how far the cancer has spread (known as the "stage").

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. 

Sarcoma facts and figures

Incidence

  • Sarcoma is more common than previously thought. In 2016 there were 5,240 people diagnosed with sarcoma cancer in the UK.
  • There are three main types of sarcoma: soft tissue sarcoma, bone sarcoma and gastrointestinal stromal tumours (GIST). 
  • Sarcoma diagnoses now make up about 1.4% of all cancer diagnoses in the UK.
  • In 2016, there were 611 cases of bone sarcoma diagnosed in the UK.
  • 88% sarcomas diagnosed in the UK are soft tissue sarcomas.
  • The majority (87%) of sarcoma cases are diganosed in England.
  • The majority of people are diagnosed when their sarcoma is about the size of a large tin of baked beans (10cm).​

Survival

  • Sarcoma survival rates have been very gradually increasing over the last two decades in the UK. 
  • Almost eight in 10 people (78%) diagnosed with sarcoma in the UK will live up to a year.
  • The average percentage of people living three years after being diagnosed with sarcoma in the UK is 64.5%. 
  • The five-year survival rate for sarcoma is 55%.​

Listen to this weeks radio report

All material on this website is provided for your information only and may not be construed as medical advice or instruction. No action or inaction should be taken based solely on the contents of this information; instead, readers should consult appropriate health professionals on any matter relating to their health and well-being.