Soft tissue sarcomas

What causes soft tissue sarcoma?

Doctors do not yet know what causes soft tissue sarcomas. However, there are certain things that can affect a person's chances of developing one. These are known as risk factors.

Having a risk factor does not mean you will get a sarcoma, and people with no risk factors can still develop it.

Macmillan Cancer Support has more information about the causes of soft tissue sarcoma.

Diagnosing soft tissue sarcoma

You’ll usually start by seeing your GP, who will examine you. They may arrange for you to have tests. This may include an ultrasound of the lump. Or they may refer you to see a specialist at the hospital straightaway.

At the hospital, the specialist will examine you. They’ll arrange different tests depending on your symptoms. Your doctor and specialist nurse will explain the tests you need. Tests usually include blood tests, ultrasound, and scans.

A doctor or nurse may take samples of tissue from the tumour. This is called a biopsy. The type of biopsy depends on where the lump is and its size. If you’re having surgery to remove the tumour, you may not have a biopsy before your operation.

If tests show you have a sarcoma, your specialist will arrange further tests. These can help find out more about the size and position of the cancer and whether it has spread.

Tests are also done on the cancer cells to find out more about the type of sarcoma. Other tests check if the cancer cells have any genetic changes or are producing any proteins.

Macmillan Cancer Support have more information about tests for soft tissue sarcoma.

Staging and grading of soft tissue sarcoma

The stage of a cancer describes its size and if it has spread from where it started.

A doctor decides the grade of the cancer by how the cancer cells look under the microscope. This gives an idea of how quickly the cancer may develop.

Knowing more about the staging and grading of soft tissue sarcoma helps you and your doctors decide on the best treatment for you.

Because sarcoma is a rare cancer, you will be treated at a specialist sarcoma unit. There, a team of specialists will meet to discuss the best possible treatment for you. This team is called a multidisciplinary team, or MDT.

Your treatment for soft tissue sarcoma depends on a few things, including:

• the type of sarcoma
• where it started
• the stage and grade of the sarcoma
• your general health

Your cancer doctor or specialist nurse will explain the different treatments and their side effects. They will also talk with you about the things worth considering when you make decisions about treatment.

The treatments below may be used for soft tissue sarcoma. Most people need a combination of them.

Surgery

Surgery is the most common treatment for soft tissue sarcoma.

If you have a bone sarcoma in an arm or leg, it is usually possible to remove the sarcoma with limb-sparing surgery.

Very rarely, the best treatment is to remove the whole of the affected limb. This is called amputation.

Some people may need reconstructive surgery to repair the area where the operation was done.

Radiotherapy

Radiotherapy uses high-energy rays to destroy cancer cells. It may be given before surgery to shrink the cancer, or after surgery to destroy any cancer cells that remain.

It can also be used to relieve symptoms and to control sarcoma that has spread or come back.

Rarely, when surgery is not possible, radiotherapy is used on its own.

Chemotherapy

Chemotherapy uses anti-cancer drugs, known as cytotoxic drugs, to destroy cancer cells. Not everyone has chemotherapy. Whether you need it depends on the type of sarcoma and the risk of it coming back. It may be given after or before surgery.

Chemotherapy can also be given to relieve symptoms and to control sarcoma that cannot be completely removed or has spread.

You might have some treatments as part of a clinical trial.

After soft tissue sarcoma treatment

Once your treatment finishes, you will have regular check-up appointments with your cancer doctor or specialist nurse. For the first 2 years, you will usually be seen every few months.

Later on, you will be seen once a year. Your cancer doctor and nurse will explain more about your follow-up. It will depend on the type of treatment you had and the risk of the cancer coming back.

Your doctor will examine you. You will usually have regular chest X-rays.

Depending on the type of sarcoma you had, you may also have other X-rays, CT scans or MRI scans of the area where the sarcoma was. These look for any signs of the cancer coming back, so that it can be treated straight away.

The most common place for soft tissue sarcoma to spread to is the lungs. If there is only a small amount of cancer in the lungs, it may be possible to remove the affected part of the lung.

Possible late effects

Late effects are side effects that do not improve, or that develop years after treatment has finished. Your doctor or nurse will explain any late effects that are likely after your treatment.

Always tell them if you have any new symptoms, or if side effects are not improving.

Lymphoedema

Lymphoedema is a swelling of a limb or another area of the body. It sometimes happens after surgery or radiotherapy to the lymph nodes, and it may develop months or years after treatment.

It is important to protect the skin in the affected area to reduce the risk of infection. If you notice any signs of infection, such as redness or swelling in the treated area, see your GP straight away.

There are things you can do to help reduce the risk of lymphoedema.

Body image

If treatment has changed your appearance, it can affect how you think and feel about your body. This is called your body image.

You may have scars from surgery, or surgery to a limb may have changed how you move. If you have had an arm or leg removed, the change to your body may be difficult to accept and adapt to.

Surgery to the head and neck can sometimes affect speaking or eating. You may need support from a speech and language therapist and a dietitian.

Talk to your nurse if you are finding it hard to cope with changes to your body.

Sex life

Cancer and its treatments may affect your sex life and how you feel about yourself sexually. This often improves gradually after treatment.

Talk to your doctor or nurse if you are worried.

Macmillan Cancer Support has more information on cancer and sex.

Fertility

Some cancer treatments can affect whether you can get pregnant or make someone pregnant. If this worries you, it is important to talk with your doctor before you start treatment.

Macmillan Cancer Support has more information about:

• getting pregnant after treatment
• making someone else pregnant after treatment
• LGBTQ+ people and cancer treatment

Wellbeing and recovery

Even if you already have a healthy lifestyle, you may choose to make some positive lifestyle changes during and after treatment.

Eating well and keeping active can improve your health and wellbeing. It can also help your body recover.

Getting support

After finishing treatment, you may still be coping with difficult feelings.

Talking to your family and friends or health professionals about how you feel can help to support your wellbeing.

There are also national support groups that you may find helpful, like Sarcoma UK.

Macmillan Cancer Support also has further information to support you. You can:

• phone the Macmillan Support Line on 0808 808 00 00
• chat to Macmillan specialists online
• use the Macmillan soft tissue sarcoma forum – you can talk to others affected by soft tissue sarcoma, ask questions and share your experience

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