Soft tissue sarcoma

Soft tissue sarcoma is a rare type of cancer that starts in soft tissue, such as muscle and fat.

What is soft tissue sarcoma?

• Soft tissue sarcoma is a rare cancer that can start almost anywhere inside the soft tissue of the body.
• Soft tissues include muscles, fat, blood vessels, ligaments and tendons.
• Soft tissue sarcoma is most common in people over 65 or people who have been treated with radiotherapy in the past.
• How serious soft tissue sarcoma is depends on where it starts in the body, whether it has spread and your general health.

Symptoms of soft tissue sarcoma

Main symptoms of soft tissue sarcoma

The most common symptom of soft tissue sarcoma is a lump somewhere on your body.

It's usually found deep under your skin and you may feel it before you see it.

The lump is usually solid to the touch, painless and hard to move around under the skin.

It will continue to grow and as it does, it can become painful.

Other symptoms

You may also get other symptoms depending on where in your body the lump is.

These can include:

• tummy pain and constipation if you get a sarcoma near your tummy
• a cough that does not go away if you get a sarcoma near your lungs

See a GP if you have:

• a lump or swelling somewhere on your body

Important

Lumps and swellings are very common and can be caused by many different conditions.

Having a lump or swelling does not definitely mean you have soft tissue sarcoma, but it's important to get checked by a GP.

If your symptoms are caused by cancer, finding it early may mean it's easier to treat.

What happens at the GP appointment

The GP will examine any lumps. They may also arrange for you to have some blood tests and an ultrasound scan.

Referral to a specialist

The GP may refer you for more tests or to see a specialist in hospital if they think you have symptoms that need to be investigated.

This may be an urgent referral if you have certain symptoms. This does not definitely mean you have cancer.

Causes of soft tissue sarcoma

Who is more likely to get soft tissue sarcoma

Soft tissue sarcoma is a rare cancer. It’s not always known what causes it.

You might be more likely to get it if you:

• are over the age of 65
• had radiotherapy in the past
• have HIV – if left untreated, HIV can cause a type of soft tissue sarcoma called Kaposi’s sarcoma
• have neurofibromatosis – a genetic condition that causes non-cancerous tumours to grow along the nerves
• have retinoblastoma – a rare type of childhood eye cancer

Tests and next steps for soft tissue sarcoma

Tests for soft tissue sarcoma

You will need more tests and scans to check for soft tissue sarcoma if the GP refers you to a specialist.

Tests that the specialist may arrange include:

• blood tests
• scans, such as an ultrasound scan (sometimes from inside your body using an endoscope, which is a long, thin tube with a small camera inside), CT scan or MRI scan
• collecting a small sample of cells from any lump using a needle (called a biopsy)

You may not have all these tests.

Getting your results

It can take several weeks to get the results of your tests.

Try not to worry if your results are taking a long time to get to you. It does not definitely mean anything is wrong.

You can call the hospital or GP if you are worried. They may be able to update you.

When you get your results, a specialist will explain what they mean and what will happen next. You may want to bring someone with you for support.

If you're told you have soft tissue sarcoma

Being told you have soft tissue sarcoma can feel overwhelming. You may be feeling anxious about what will happen next.

It can help to bring someone with you to any appointments you have.

A group of specialists will look after you throughout your diagnosis, treatment and beyond.

Your team will include a clinical nurse specialist who will be your main point of contact during and after treatment. You can ask them any questions you have.

Treatment for soft tissue sarcoma

Treatment for soft tissue sarcoma

The treatment you’ll have for soft tissue sarcoma will depend on:

• the type of soft tissue sarcoma
• the size of the cancer
• where it is in your body
• if it has spread to your organs
• your general health

Soft tissue sarcomas are usually treated using surgery and radiotherapy.

You may also be offered chemotherapy and targeted medicines.

The specialist care team looking after you will:

• explain the treatments, benefits and side effects
• work with you to create a treatment plan that is best for you
• help you manage any side effects

You'll have regular check-ups during and after any treatments. You may also have tests and scans.

If you have any symptoms or side effects that you are worried about, talk to your specialists. You do not need to wait for your next check-up.

Surgery

Surgery is the main treatment for soft tissue sarcoma. The aim is to remove as much of the cancer as possible.

If you have sarcoma in one of your arms or legs, the surgeon will try to remove the cancer without damaging or removing your arm or leg. This is known as limb sparing surgery.

Rarely, the surgeon may recommend removing your arm or leg (amputation). This is usually only done if the sarcoma has come back after limb sparing surgery.

If the cancer has spread, you may be offered further surgery.

Radiotherapy

Radiotherapy uses high-energy rays of radiation to kill cancer cells.

You may be offered radiotherapy:

• to shrink the cancer before surgery
• after surgery to help reduce the risk of the cancer coming back
• to help shrink cancers that have spread to other parts of the body

Chemotherapy

Chemotherapy is not usually used to treat soft tissue sarcoma.

You may be offered chemotherapy:

• to shrink the cancer before surgery
• if you have certain types of sarcoma that respond well to chemotherapy
• to slow the growth of the cancer and relieve your symptoms if it has spread

Targeted medicines

Targeted medicines kill cancer cells.

They are sometimes used to slow the growth of certain types of soft tissue sarcomas and help you live longer.

What happens if you’ve been told your cancer cannot be cured

If you’ve been diagnosed with advanced soft tissue sarcoma, it might be hard to treat and not possible to cure.

The aim of your treatment will be to slow down the growth and spread of the cancer and its symptoms, and help you live longer.

Finding out the cancer cannot be cured can be very hard news to take in.

You will be referred to a special team of doctors and nurses called the palliative care team or symptom control team.

They will work with you to help manage your symptoms and make you feel more comfortable.

The clinical nurse specialist or palliative care team can also help you and your loved ones get any support you need.