Head and neck sarcoma | Sarcoma UK
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Head and neck sarcoma

 

This page explains head and neck sarcoma. It includes information about symptoms, diagnosis, treatment and where to get support.

 

What is head and neck sarcoma?

 

Head and neck sarcomas are a group of rare cancers that develop in the head and neck. Sarcomas start in bone or soft tissue. Soft tissues include muscle, fat, nerves, blood vessels and other tissues that support the body.

The head and neck includes:

  • the mouth
  • the jaw
  • the throat
  • the nose and sinuses
  • the eyes
  • the ears
  • the neck.

These areas help you:

  • breathe
  • eat
  • swallow
  • speak
  • hear
  • see.

 

Types of head and neck sarcoma

 

There are many different types of head and neck sarcoma.

Some of the more common types include:

  • Undifferentiated pleomorphic sarcoma (UPS)
  • Leiomyosarcoma
  • Angiosarcoma
  • Malignant peripheral nerve sheath tumour (MPNST)
  • Osteosarcoma
  • Chondrosarcoma
  • Rhabdomyosarcoma

Your doctor will explain which type you have. You can find out more about different types of sarcoma on our sarcoma subtypes page.

 

Who gets head and neck sarcoma?

 

Head and neck sarcoma can happen at any age.

Some types are more common in children and young people, while others are more common in adults.

 

What causes head and neck sarcoma?

 

Doctors do not know exactly why most head and neck sarcomas develop.

Most sarcomas happen because of changes in cell DNA. DNA contains the instructions that tell cells how to work. These changes usually happen by chance and are not inherited (passed down) from your parents.

A small number of people have an inherited condition that makes them more likely to develop sarcoma. Your doctor will explain if this applies to you.

Some people develop a head and neck sarcoma many years after having radiotherapy for another cancer. This is called a radiotherapy-associated sarcoma.

 

Symptoms of head and neck sarcoma

 

The symptoms of head and neck sarcoma depend on which part of the head and neck the tumour starts in.

People often notice:

  • a lump or swelling in the head or neck
  • a lump that gets bigger or changes
  • pain or discomfort in the head or neck
  • difficulty moving the jaw, face or neck
  • difficulty swallowing
  • changes to your voice
  • hearing problems
  • a blocked nose or sinus problems that do not get better
  • changes to your vision
  • bleeding from your nose.

 

Diagnosing head and neck sarcoma

 

If you have symptoms that could be head and neck sarcoma, your GP will examine you and may refer you to a specialist team. The specialist team will use different scans and tests to see if you have sarcoma.

You might have one or more of these tests:

  • Ultrasound: uses sound waves to produce a picture of your neck and lymph nodes on a screen.
  • MRI scan: uses magnets to create an image of the tissue in the body.
  • Core needle biopsy: a small sample of bone or soft tissue taken with a needle.
  • CT scan: a computed tomography (CT) scan uses X-rays to make a 3D image of the inside of your body.
  • PET-CT scan: combines a CT scan with a positron emission tomography (PET) scan. A small amount of radioactive material is injected into a vein before the scan. It can help show where the cancer is in the body and if it has spread.
  • X-ray: uses X-radiation to take images of dense tissues inside the body, such as bones or tumours.

We have more information about the different types of scans and tests you might have.

If you are diagnosed with head and neck sarcoma, your care will usually be planned by a sarcoma multidisciplinary team (MDT) working together with a head and neck MDT.

These teams include healthcare professionals who are experts in diagnosing and treating sarcoma and head and neck cancers.

You may also see a speech and language therapist (SLT), who can support you if you have difficulties with speech, eating, drinking or swallowing following surgery or other treatment.

Together, they will recommend the treatment that is right for you.

 

Treatment for head and neck sarcoma

 

Surgery

Surgery is often the main treatment for head and neck sarcoma.

Your surgeon will remove the tumour and a small area of healthy tissue around it. This is called taking a margin. This helps reduce the chance of the sarcoma coming back.

The head and neck contain many important parts of the body. These include nerves, blood vessels and muscles. They help you breathe, swallow and speak. This can make surgery more difficult. Your surgeon will plan your operation carefully. They will aim to remove as much of the tumour as possible while protecting these important parts and how they work.

Some people need reconstructive surgery after the tumour is removed. This repairs the area and can help restore how it looks and works, including speaking, swallowing and movement.

Reconstructive surgery is often done during the same operation as the tumour removal. It may use bone, muscle or skin from another part of your body to rebuild the area.

Your treatment team will explain what your operation involves, what to expect afterwards, and what support is available during your recovery.

Radiotherapy

Radiotherapy uses radiation to kill cancer cells.

You may have radiotherapy:

  • before surgery to shrink the tumour
  • after surgery to reduce the chance of the sarcoma coming back
  • if surgery is not possible
  • to help control symptoms.

Not everyone with head and neck sarcoma needs radiotherapy.

Some people may be offered proton beam therapy. This is a type of radiotherapy that can reduce the amount of radiation reaching healthy tissue close to the tumour. Your specialist team will tell you if it is suitable for you.

Chemotherapy

Chemotherapy uses medicines to destroy cancer cells.

Some types of head and neck sarcoma respond better to chemotherapy than others. This means chemotherapy is not suitable for everyone.

You may have chemotherapy:

  • before surgery, to help shrink the tumour
  • after surgery, to reduce the chance of the sarcoma coming back.

Your specialist team will explain whether chemotherapy is suitable for you and what to expect from treatment.

After treatment

 

After your treatment for sarcoma is finished, you will have follow-up appointments for several years. This is where your doctor can look for signs of sarcoma coming back.

During follow-up, you will have:

  • a chance to discuss symptoms
  • examinations to look for any signs of sarcoma returning
  • imaging scans such as a CT or MRI
  • chest X-rays to check whether the cancer has spread to the lungs
  • a chance to talk about how you’re feeling and any worries you have.

We know that some people can feel uncertain and overwhelmed when treatment finishes, and that is completely normal. We have more information about living with and beyond sarcoma.

 

Recurrence

 

Sarcoma can sometimes come back in the same area after treatment. This is called a local recurrence.

Sometimes sarcoma can spread to other parts of the body. This is called secondary cancer or metastasis. The lungs are the most common place for sarcoma to spread. As part of your follow-up care, you may have chest X-rays or other scans. These help your team check for signs of sarcoma coming back or spreading.

If the cancer does come back or spread, your specialist team may offer more treatment. This may include chemotherapy, surgery, or radiotherapy. Your team will plan your treatment based on your individual situation.

Your doctor or specialist nurse can explain which changes to check for between appointments.

It’s normal to feel worried that sarcoma might come back after treatment. Many people feel this way. If you’re feeling anxious, speak to your healthcare team. They can reassure you, answer your questions, and help you find support.

We have more information about if sarcoma comes back.

 

Living with head and neck sarcoma

Living with head and neck sarcoma can be hard. We have support to help you with your mental health, physical health, and we also have information about financial support. Whatever you’re worried about, we’re here to support you.

If you have any more questions about head and neck sarcoma, or if you need to talk to someone, our Support Line team are here for you.

 

More support

 

Call the Sarcoma UK Support Line

The Sarcoma UK Support Line is here for everyone affected by sarcoma. Get in touch for friendly, expert, confidential and free advice about sarcoma.

Support groups

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

Order our soft tissue or bone sarcoma booklet

Our booklets include more information about bone and soft tissue sarcoma. You can order our information booklets for free from our shop.

Other organisations

  • The Swallows Head & Neck Cancer Charity support all people affected by head and neck cancers, patients, caregivers, friends or relatives. It has information, support groups, and a support line.

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Last reviewed 2023 | Next review due : This information is currently under review.

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