This section is for teenagers and young adults. It’s about treatment for a type of cancer called a soft tissue sarcoma. There are different types of soft tissue sarcoma, and the information in this section covers rhabdomyosarcomas, synovial sarcomas and fibrosarcomas, which are the most common types in teenagers.
If you have a different type and want to know more, please contact Macmillan.
The three main types of treatment for soft tissue sarcomas are surgery, chemotherapy and radiotherapy.
Most people have a combination of treatments. Your doctors will plan your treatment based on:
- the type of sarcoma you have
- the stage of the cancer (how big it is and whether it has spread from where it started)
- the grade of the cancer (how fast-growing the cancer cells are).
If you have any questions about your treatment, ask your doctor or nurse. They’ll be happy to help you understand what's involved.
If you have a type of soft tissue sarcoma called a soft tissue Ewing's sarcoma, it's treated in the same way as a Ewing’s sarcoma in a bone. You can read more about this in Macmillan's bone cancer section.
This is when you're given anti-cancer drugs to destroy the cancer cells. For soft tissue sarcomas, chemo can be given in a number of situations:
- before surgery - to shrink the tumour
- after surgery - to reduce the risk of the cancer coming back, and to treat cancer cells that have spread
- when it isn’t possible to remove the sarcoma with an operation.
For soft tissue sarcomas, chemo is given into a vein, usually through a central line, a port or a PICC line. You can find out more about chemo and how it's given.
You’ll have chemo over a few days, then you’ll have a few weeks off so that your body can recover from any side effects. The days you have the chemo and the rest period afterwards are called a cycle. Most people have several cycles of chemo.
You'll probably need to stay in hospital for some of the time during chemo, but it’s often possible to have part of your treatment as an outpatient.
Different chemo drugs are used for soft tissue sarcomas, and you’ll usually have two or three drugs in combination. This is sometimes called a regimen or treatment plan. Your doctor will decide which regimen or treatment plan is best for you depending on the grade and stage of your sarcoma. You may have chemotherapy treatment as part of a clinical research trial. It will be your decision whether or not you take part in a trial. Your doctor will explain it fully before you make the choice if there is a trial that is right for you.
Some of the main chemotherapy drugs for soft tissue sarcomas are:
- actinomycin D
If you have a rhabdomyosarcoma, you may be given ifosfamide, vincristine and actinomycin. Giving these drugs together is called IVA.
You might also be given ifosfamide, vincristine actinomycin and doxorubicin. Giving these drugs together is called IVADO.
Macmillan have more information about chemotherapy, including information about individual drugs and combinations of drugs, IVA and IVADO chemotherapy. This is written for anyone who's looking for information about chemotherapy, not just for young adults.
Other types of soft tissue sarcoma can be treated with different combinations of drugs, such as ifosfamide and doxorubicin, or vinorelbine and cyclophosphamide. Your cancer doctor and specialist nurse will explain more about the type of chemotherapy you’re going to have and how many cycles you’ll need.
Different chemo drugs cause different side effects. Some people have just a few side effects and others have more. It's hard to know how it's going to be for you, as everyone is different. The most common are hair loss, tiredness, sickness and being more at risk of getting an infection.
Side effects can often be controlled, so always let your doctor or nurse know about the side effects you’re having. They can usually do something to improve them. Most side effects are short-term (temporary) and gradually disappear once treatment stops.
If you want to know more about the type of chemo you’re having and its side effects, there’s lots more information in Macmillan's chemotherapy section.
Surgery to remove the cancer is one of the main treatments for soft tissue sarcomas. Your surgeon will aim to remove all of the cancer, and at the same time reduce any long-term effects as much as possible.
The operation you have will depend on the size of the sarcoma and where it is in your body. You might meet other people with the same type of sarcoma who have had a different operation. Everyone is different. Your cancer doctor and specialist nurse will talk to you about your operation and make sure you understand why you need to have it and what's involved. Below are some of the different types of operation you might have for a soft tissue sarcoma.
We also have more information about what will happen before and after the operation in our surgery section.
Wide local excision
You may have an operation called a wide local excision to remove the cancer and an area of tissue surrounding it (called the margin). This tissue is checked to make sure it doesn’t contain any cancer cells. Sometimes the surgeon also removes some of the lymph nodes (glands) near the cancer to find out if there are any cancer cells there. If there are cancer cells in the margin or lymph nodes, some people may need to have more surgery.
Skin graft or soft tissue graft
If you need to have a large area of tissue removed, you may need to have a skin graft or soft tissue graft. This is when skin and sometimes muscle is taken from a different part of the body to place over the area where the sarcoma was removed from. This is called plastic surgery or reconstructive surgery. It’s done to give you as natural an appearance as possible and to make sure you can still do the things you did before your operation. Both operation sites will gradually heal over a few weeks after the operation.
If the sarcoma is in an arm or leg you may have limb-sparing surgery. This means the surgeon takes away the cancer without removing the arm or leg. You’ll have all of the tumour taken away from your limb, as well as any bone and muscle affected by the tumour.
The surgeon then replaces what they’ve taken away. This may involve using plastic surgery or reconstructive surgery (see skin graft or soft tissue graft) to replace the tissue that’s been removed, or it may involve surgery to replace any bone that’s been removed. If you need to have bone removed, the surgeon replaces it with a specially designed metal implant called an endoprosthesis.
If the cancer affects a bone in or near a joint, your joint can be replaced with an artificial one.
Before the operation
Your physiotherapist might give you exercises before your operation to strengthen your muscles.
If you've had chemo, you'll need two or three weeks to recover from the treatment before you can have your operation. Doctors will check that your blood count has returned to normal. They'll also make sure that you're well enough to have the operation. If you’ve lost weight or been off your food, you might need to build yourself up a bit. The hospital dietitian can help you do this. You’ll probably also see a physiotherapist, who’ll give you exercises to do to strengthen your muscles.
If you want to have a look at the endoprosthesis that will be put in during your surgery, your nurse or surgeon can usually arrange this.
After the operation
You’ll have a bandage or splint on your limb to keep it still and let it heal.
You’ll probably have a tube, called a drain, coming out of your wound. This stops fluid building up in your wound. A nurse will take it out after about 3-4 days or when there isn’t very much fluid coming out of the wound.
You won’t feel like eating or drinking much for a few hours after your operation, so you’ll be given fluids into a vein.
You’ll probably feel a bit sore to begin with, but you’ll be given strong painkillers to help. It’s important to tell the nurses if you need extra pain relief. The pain usually starts to get better within 2-3 days. As time goes on you'll need fewer painkillers and will start to feel a lot more comfortable. Be honest about how you are feeling to your doctors and nurses and they can make sure that you are comfortable and as pain-free as possible.
Once you’re home you’ll probably feel a bit better and stronger every day. But if you do have any problems it’s important to get them treated right away, as a delay could mean they get much more serious.
If your new joint starts to stiffen up you may need some more physiotherapy, so tell your doctor so they can arrange this for you.
If you notice any new redness, soreness or swelling in the limb that’s been operated on, it’s really important to get in touch with your doctor right away. You might have an infection that needs treatment, so you’ll need to see the surgeon who did your operation without delay.
There’s more information about the long-term effects of limb-sparing surgery in our section on living with and after a soft tissue sarcoma.
Very occasionally the only way to get rid of the cancer is to remove the limb where the sarcoma is growing. This is called an amputation and it’s only ever done if there is no alternative.
Before the operation
Your doctor will talk things through with you so that you fully understand what’s involved. Losing a limb can feel very scary and you might want to talk to a specialist nurse or a counsellor about your feelings. It might also help to talk to someone who has had an amputation - your nurse or doctor can arrange this. It's really important to get support at this tough time.
After the operation
You’ll have bandages or a plaster cast on the area that’s been operated on. There’ll be a drain coming from the wound to remove any excess fluid that builds up. The drain is usually taken out by a nurse on the ward after 3-4 days or when there is no fluid coming from the wound. You’ll also be given fluid into a vein in your arm until you feel like eating and drinking again.
You’ll probably feel a bit sore after your operation, especially for the first 2-4 days, but you'll be given strong painkillers to help with this. It’s important to tell the doctors and nurses if you need extra pain relief. You may have pain that feels as if it’s coming from the part of the limb that’s been removed. This is known as phantom pain. Let your doctor or nurse know if you have this - there are medicines that can help ease it or take it away. It usually gets better and goes away in time.
A physiotherapist will visit you a day or so after your operation. They’ll show you exercises to keep your muscles strong and flexible.
If you’ve had an arm removed, you’ll be able to get up and move around once you’ve recovered from the anaesthetic and don’t feel too sore. If you’ve had a leg removed, the physiotherapist will show you how to move around in bed and get from your bed to a chair. You'll probably be moving around with crutches or in a wheelchair within a few days.
Once you’re up and around you’ll go to the hospital gym for physiotherapy. This is a big part of your recovery. Your physiotherapist will give you more exercises to do as your wound heals and you get stronger.
It’ll take a few months for your limb to heal to its final shape after the operation, so you won’t be fitted with your permanent prosthesis (artificial limb) until this happens. In the meantime, you’ll be given a temporary prosthesis and you’ll start learning how to use it in physiotherapy. A specialist team will help you recover from the operation and get you used to the artificial limb that you’re fitted with.
You'll be able to go home about two weeks after your operation.
You can read more about recovering after the operation in our information about living with and after a soft tissue sarcoma.
Remember that it may be possible to talk to someone who has been through the same as you. Your doctor or nurse can arrange this.
Radiotherapy treats cancer by using high-energy x-rays to destroy cancer cells while doing as little harm as possible to normal cells. There’s more information about it in the radiotherapy section.
For soft tissue sarcomas radiotherapy can be given in a number of situations:
- after surgery - to reduce the risk of the cancer coming back in the same area, or to get rid of any cancer cells that may be left behind. You’ll usually have it about 4-6 weeks after the operation, when your wound has healed
- before surgery - to shrink the tumour and make it easier to remove with an operation
- when it isn’t possible to remove the sarcoma with an operation
Radiotherapy is generally given every weekday (Monday-Friday). Each treatment takes a few minutes.
Radiotherapy isn't painful, but it can cause some side effects. After a few treatments you may begin to feel tired, and your skin may go red or get darker and feel sore or itchy around the area that’s being treated. This gets better once your radiotherapy treatment is over.
Other side effects depend on which part of your body is being treated. Having radiotherapy around a joint can make it feel stiff, but physiotherapy can help.
We also have more info about:
If you're looking for information about soft tissue sarcomas in people of all ages, see our general soft tissue sarcoma information.