What does it feel like?
The first symptom most people notice is a lump that doesn’t hurt but carries on growing and doesn’t go away. You might also feel sore as the lump grows.
How are they diagnosed?
Soft tissue sarcomas are normally diagnosed when specialists do a biopsy. This means they take a sample of the cells in your lump and look at them under a microscope, but they will numb the area or put you to sleep so it does not hurt.
You might also need a blood test or a scan. Scans will let specialists get a better look at your tumour. They are like big cameras that take photos of your brain! You will not feel anything so there is no need to worry about anything, other than keeping still!
Will I need medicine and treatment?
Most people will have surgery to remove the cancer. For most operations, you will have a general anaesthetic so that you go to sleep and won’t feel anything.
You might also need to have chemotherapy before your surgery to make the tumour smaller and easier to remove, or afterwards to get rid of any cancer cells that are left. Chemotherapy means medicines that kill cancer cells.
If you have a soft tissue sarcoma in your arm or leg, you might have radiotherapy. This is when you lie very still on a special bed and special invisible rays are pointed at the tumour to get rid of the cancer cells.
Some children go to another country to have a special form of radiotherapy called proton beam therapy. Your specialist will let you know if you need to do this.
What will treatment feel like?
After your surgery, you’ll probably be given some painkillers so that it doesn’t hurt. You might have changes to the part of your body where you had the operation and it’s common to have a scar, but they often fade over time.
Chemotherapy might make you feel more tired and poorly than usual. It can make you feel a bit sick, change how much you need the toilet and you might lose your hair while you’re on treatment. Radiotherapy can also make you feel unwell and can make your skin a bit red and sore where you are being treated.
This all might sound a bit scary, but it is very normal and part of helping you get better.
If you are worried, talk to your nurse or doctor, or a family member – there are lots of things they can do to help.
What will happen afterwards?
After your treatment is complete you will still need to see a doctor regularly. They will be looking for any signs that your cancer has come back and will check that your organs, like your heart and lungs, are working properly.
Will I get ill again?
Any future problems will depend on lots of different things – like the type of cancer and treatment you had. Many people will not have any problems at all. The doctor will make sure you have all the help you need and is always there to talk about what is happening and answer any questions.
Updated April 2018, next review due 2021.