Soft tissue sarcomas

A soft tissue sarcoma (STS) is a rare cancer. It can start in the cells of tissues that support, connect, surround and protect the organs in your body. These tissues include:

• fat
• muscle
• nerves
• fibrous tissues
• tendons and ligaments
• blood vessels

Most often, soft tissue sarcoma starts in the legs or arms. But it can develop anywhere in the body, including the:

• womb (uterus)
• stomach
• small or large bowel (intestines)
• area at the back of the tummy (abdomen) called the retroperitoneum
• skin
• head and neck

Sarcoma is more common in people over 30.

Certain types of sarcoma can develop in children and teenagers. The symptoms and treatment may be different from those of an adult with the same sarcoma. The Children's Cancer and Leukaemia Group (CCLG) has more information about children's cancers.

Sarcomas can also start in the bone. This is called primary bone cancer. These grow differently from soft tissue sarcomas and are treated differently.

Sometimes it's hard to tell whether a sarcoma has started in soft tissue or in bone. Some types, like Ewing sarcoma, can start in either one. Ewing sarcoma is most common in teenagers.

The causes of soft tissue sarcomas aren't known. But some things can affect your chances of developing a soft tissue sarcoma, and these are called risk factors.

Having risk factors doesn't mean you'll get sarcoma, and people without any risk factors can still develop it.

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

The stage of a cancer tells you how big it is and whether it has spread from where it started. The grade is decided by a doctor, who looks at the cancer cells under the microscope. This gives an idea of how quickly the cancer may develop.

The more you know about the staging and grading of soft tissue sarcoma, the better placed you and your doctors are to decide on the best treatment for you.

Sarcoma is a rare cancer, so you'll be treated at a specialist sarcoma unit. A team of specialists will meet to talk over the best possible treatment for you. This team is called a multidisciplinary team (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 to think about when you make decisions on treatment.

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

Surgery is the most common treatment for soft tissue sarcoma. If you have a bone sarcoma in an arm or leg, the doctors can usually remove it with limb-sparing surgery. Very rarely, the best treatment is to remove the whole of the affected limb (amputation). Some people might need reconstructive surgery to repair the area where the operation was done.

Radiotherapy uses high-energy rays to destroy cancer cells. For a soft tissue sarcoma, you may have it before surgery, to shrink the cancer, or after surgery, to destroy any cancer cells that remain.

Doctors can also use it to relieve symptoms and to control sarcoma that has spread or come back. Rarely, when surgery isn't possible, radiotherapy is used on its own.

Chemotherapy for soft tissue sarcoma uses anti-cancer (cytotoxic) drugs to destroy cancer cells. Not everyone has it. Whether you do depends on the type of sarcoma and the risk of it coming back. When it is used, it may be given before or after surgery.

Chemotherapy can also be given to relieve symptoms, and to control a sarcoma that can't be completely removed or has spread.

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

Once your treatment for soft tissue sarcoma is over, you'll have regular check-ups with your cancer doctor or specialist nurse. For the first 2 years you'll usually be seen every few months.

After that, you'll be seen once a year. Your cancer doctor and nurse will tell you more about your own follow-up, because it depends on the type of treatment you had and how likely the cancer is to come back.

At these visits your doctor will examine you. You'll usually have regular chest X-rays too.

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 tests look for any sign of the cancer coming back, so it can be treated straight away.

Soft tissue sarcoma most often spreads to the lungs. If there's only a small amount of cancer in the lungs, it may be possible to remove the affected part of the lung.

Late effects are side effects that don't get better, or that show up years after your treatment for soft tissue sarcoma has finished. Your doctor or nurse will tell you which late effects are likely after the treatment you've had.

If you notice any new symptoms, or if side effects aren't getting better, always tell them.

Lymphoedema is a swelling in a limb or another part of the body. It can happen after surgery or radiotherapy to the lymph nodes, and it might show up months or even years after the treatment.

Looking after the skin in the affected area matters, because it lowers the chance of an infection. If you notice any sign of infection, such as redness or swelling in the treated area, see your doctor straight away.

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

If treatment for soft tissue sarcoma has changed how you look, it can change how you think and feel about your body. This is called your body image.

You may have scars from surgery. Or surgery on a limb may have changed the way you move. If you have had an arm or leg removed, the change to your body can be hard to accept and get used 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.

If you are finding it hard to cope with these changes to your body, talk to your nurse.

Some cancer treatments can affect whether you can get pregnant or make someone pregnant. If you're worried about this, talk with your doctor before you start treatment.

Macmillan Cancer Support have more information about:

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

You may already live a healthy life, but you might still decide to make a few positive changes during and after your treatment for soft tissue sarcoma. Eating well and staying active can improve your health and wellbeing, and they can also help your body recover.