Soft tissue sarcomas: Teenagers and young adults

Soft tissue sarcomas | NHS inform Home Illnesses and conditions Symptoms and self-help Tests and treatments Healthy living Care, support and rights Scotlands Service Directory 0 Home Illnesses and conditions Cancer Cancer types in teenagers and young adults Soft tissue sarcomas: Teenagers and young adults Soft tissue sarcomas: Teenagers and young adults Introduction The soft tissue Tests for soft tissue sarcomas Treating soft tissue sarcomas Living with a soft tissue sarcoma Introduction This section is for teenagers and young adults. Its about a type of cancer called soft tissue sarcoma. There are several different types of soft tissue sarcoma. The information in this section covers rhabdomyosarcomas, synovial sarcomas, soft tissue Ewings sarcoma and fibrosarcomas. These are the most common types in teenagers. If you have a different type and want to know more,contact Macmillan . If youre looking for information about soft tissue sarcomas in people of all ages, read our general soft tissue sarcoma section. Soft tissue sarcomas are cancers that develop from cells in the soft, supporting tissues of the body. There are many different types, but the ones that tend to affect teenagers are: rhabdomyosarcomas synovial sarcomas soft tissue Ewings sarcoma fibrosarcomas Sarcomas can also develop in the bones. This is called osteosarcoma. Signs and symptoms of soft tissue sarcomas The symptoms of a sarcoma will depend on where it is: if its in an arm or leg, symptoms include a lump or swelling in the limb  this is usually painless, but not always if its in the tummy (abdomen), symptoms include a painful, swollen tummy, and problems going to the toilet to poo (called constipation) if its in your bladder, symptoms include pain in the lower tummy, finding it difficult to pee (pass urine), and having blood in your pee if its in the chest, symptoms can include breathlessness, a cough and pain in your chest if its in the head or neck, symptoms include a lump, a blockage and discharge from the nose or throat;occasionally an eye may become swollen and stick out a bit You may also have other symptoms, such as tiredness, loss of appetite or weight loss. Remember  most people with these symptoms wont have a sarcoma. But if you have any of these symptoms, or are worried that you may have a sarcoma, the first thing to do is to speak to your GP. Theyll examine you and refer you to a hospital if they think you need to see a specialist doctor. Causes Its unknown what causes sarcomas in teenagers and young adults. People often think a knock or injury might have caused a sarcoma, but theres no evidence for this. Remember that nothing youve done has caused the cancer. Types of soft tissue sarcoma Rhabdomyosarcoma This type of sarcoma grows in the active muscles of the body. These are muscles that we have control over, like the muscles we use to move our arms or legs. Rhabdomyosarcomas are most likely to happen in the head, neck, bladder, vagina, arms, legs and trunk. There are different types or rhabdomyosarcoma. The most likely one to happen in teenagers and young adults is called an alveolar rhabdomyosarcoma and affects an arm or a leg. To find out more look atMacmillans rhabdomyosarcoma information that is written for all ages. Synovial Sarcoma This type of sarcoma is most likely to happen in the tissue around the joints, like your elbow, knee and ankle. It can also happen in other parts of your body, but that is less common. This type of sarcoma might not be obvious straight away because the lump grows slowly and is usually not sore. Soft tissue Ewings sarcoma If you have a type of soft tissue sarcoma called a soft tissue Ewings sarcoma, its treated in the same way as a Ewings sarcoma in a bone. You can read more about this in Macmillans bone cancer section. Fibrosarcoma This type of sarcoma happens in the fibrous tissue in your body. Fibrous tissue joins the structures inside your body together  like your muscles to bones. Youre most likely to find a fibrosarcoma on your arms, legs or trunk, but they can happen deeper in your body. If youre looking for information about soft tissue sarcomas in people of all ages, read our general soft tissue sarcoma information. The soft tissue The soft tissues of the body connect, surround and support other body tissue and organs. Soft tissue includes muscle, cartilage, fat, fibrous tissue, nerves and blood vessels. Types of soft tissue sarcoma Soft tissue sarcomas are cancers that develop from cells in the soft, supporting tissues of the body. There are many different types, but the ones that tend to affect teenagers are: rhabdomyosarcomas synovial sarcomas fibrosarcomas There are also bone sarcomas. Doctors can tell the type of soft tissue sarcoma by closely examining the sample of tissue thats been removed (called a biopsy) under a microscope. Rhabdomyosarcomas These develop from muscle and the surrounding tissue. There are 2 main types that affect younger people: alveolar rhabdomyosarcomas these are more common in teenagers and young adults and are usually found in an arm or leg (limb), or in the muscles of the chest or tummy (abdomen) embryonal rhabdomyosarcomas  these are more common in children and can start in a number of areas, for example, around the eye, where the throat joins with the nose, the bladder, the womb, or the vagina Synovial sarcomas These usually develop near to but not inside joints, such as the knee or elbow. But they can develop anywhere in the body. They usually appear as hard lumps. Fibrosarcomas These start in cells called fibrocytes, which form the tissue that helps join parts of our body together, such as joining the muscles to the bones. Fibrosarcomas are usually found in the arms, legs or torso, but can also start in areas deeper in the body. The information in this section covers the common types of soft tissue sarcoma, but if you have a different one and want to know more, please contact Macmillan . Causes Its unknownwhat causes sarcomas in teenagers and young adults. Remember that nothing youve done has caused the cancer. Some rare conditions that run in families (known as genetic conditions) can increase the chance (risk) of getting a soft tissue sarcoma. You would usually know if anyone in your family had one of these conditions. People who had radiotherapy for another type of cancer when they were a child may have an increased risk of developing a sarcoma in later life  this would be from their teens onwards. People often think a knock or injury might have caused a sarcoma, but theres no evidence for this. If youre looking for information about soft tissue sarcomas in people of all ages, read our general soft tissue sarcoma information. Tests for soft tissue sarcomas There are some tests you might have at your GP surgery or at the hospital. These tests will help the doctors see whether you have a soft tissue sarcoma. Visiting your GP If you think you might have some of the symptoms of a soft tissue sarcoma, you should go to your GP. Theyll be able to talk to you about your symptoms, and they can arrange tests to find out more. Theyll examine you and usually arrange for some tests, such as X-rays. There may be a number of reasons why youre feeling unwell, so it can be difficult to diagnose the problem straight away. If your GP cant find the cause, youll be referred to a specialist at the hospital. At the hospital To begin with, you may see a specialist at a general hospital for more tests. If your GP suspects you have a soft tissue sarcoma, they may refer you directly to a sarcoma specialist. If youre diagnosed with a sarcoma and youre not already seeing a specialist, youll be referred to one. Youll probably see a lot of doctors, nurses and other staff. Your hospital doctor will examine you and arrange for some of thefollowing tests, which Macmillan have information on: X-rays bone scans ultrasound scans MRI , CT or PET scans biopsies bone marrow tests You wont necessarily need all of these tests. Further tests If the tests show that you have a sarcoma, you might need a few more tests to check how your body is working in general. Macmillan have information on these, including: blood tests tests to check your heart is healthy, including an echocardiogram or electrocardiogram (ECG), or a nuclear medicine scan (MUGA scan) tests to check your kidneys are healthy, which can involve blood tests or having your wee (urine) collected for a period of time or a nuclear medicine blood test (GFR) This may seem like a lot of tests, but theyll help the doctors plan the best treatment for you. Having tests and waiting for the results can be a scary time. Talking about how you feel and getting support from family, friends and your specialist nurse and doctor can make it a bit easier. If youre looking for information about soft tissue sarcomas in people of all ages, read our general soft tissue sarcoma information. Treating soft tissue sarcomas This section is for teenagers and young adults. Its 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 3 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: thetype 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. Theyll be happy to help you understand whats involved. If you have a type of soft tissue sarcoma called a soft tissue Ewings sarcoma, its treated in the same way as a Ewings sarcoma in a bone. Chemotherapy This is when youre given anti-cancer drugs to destroy the cancer cells. For soft tissue sarcomas, chemotherapy 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 isnt possible to remove the sarcoma with an operation For soft tissue sarcomas, chemotherapyis given into a vein, usually through a central line, a port or a PICC line. You can find out more about chemotherapy and how its given. Youll have chemotherapyover a few days, then youll have a few weeks off so that your body can recover from any side effects. The days you have the chemotherapyand the rest period afterwards are called a cycle. Most people have several cycles of chemotherapy. Youll probably need to stay in hospital for some of the time during chemotherapy, but its often possible to have part of your treatment as an outpatient. Different chemotherapy drugs are used for soft tissue sarcomas, and youll usually have 2 or 3 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: ifosfamide vincristine actinomycin D doxorubicin cyclophosphamide cisplatin 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 whos 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 youre going to have and how many cycles youll need. Side effects Different chemotherapydrugs cause different side effects. Some people have just a few side effects and others have more. Its hard to know how its 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 youre 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 chemotherapyyoure having and its side effects, theres lots more information inMacmillans chemotherapy section . Surgery 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 whats 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 doesnt 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. Its 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. Limb-sparing surgery 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. Youll 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 theyve taken away. This may involve using plastic surgery or reconstructive surgery (see skin graft or soft tissue graft) to replace the tissue thats been removed, or it may involve surgery to replace any bone thats 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 youve had chemotherapy, youll need 2 or 3 weeks to recover from the treatment before you can have your operation. Doctors will check that your blood count has returned to normal. Theyll also make sure that youre well enough to have the operation. If youve lost weight or been off your food, you might need to build yourself up a bit. The hospital dietitian can help you do this. Youll probably also see a physiotherapist, wholl 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 Youll have a bandage or splint on your limb to keep it still and let it heal. Youll 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 to 4 days or when there isnt very much fluid coming out of the wound. You wont feel like eating or drinking much for a few hours after your operation, so youll be given fluids into a vein. Youll probably feel a bit sore to begin with, but youll be given strong painkillers to help. Its important to tell the nurses if you need extra pain relief. The pain usually starts to get better within 2to 3 days. As time goes on youll 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 youre home youll probably feel a bit better and stronger every day. But if you do have any problems its 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 thats been operated on, its really important to get in touch with your doctor right away. You might have an infection that needs treatment, so youll need to see the surgeon who did your operation without delay. Theres more information about the long-term effects of limb-sparing surgery in our section on living with and after a soft tissue sarcoma . Amputation 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 its only ever done if there is no alternative. Before the operation Your doctor will talk things through with you so that you fully understand whats 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. Its really important to get support. After the operation Youll have bandages or a plaster cast on the area thats been operated on. Therell 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 to 4 days or when there is no fluid coming from the wound. Youll also be given fluid into a vein in your arm until you feel like eating and drinking again. Youll probably feel a bit sore after your operation, especially for the first 2 to 4 days, but youll be given strong painkillers to help with this. Its important to tell the doctors and nurses if you need extra pain relief. You may have pain that feels as if its coming from the part of the limb thats 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. Theyll show you exercises to keep your muscles strong and flexible. If youve had an arm removed, youll be able to get up and move around once youve recovered from the anaesthetic and dont feel too sore. If youve had a leg removed, the physiotherapist will show you how to move around in bed and get from your bed to a chair. Youll probably be moving around with crutches or in a wheelchair within a few days. Once youre up and around youll 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. Itll take a few months for your limb to heal to its final shape after the operation, so you wont be fitted with your permanent prosthesis (artificial limb) until this happens. In the meantime, youll be given a temporary prosthesis and youll 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 youre fitted with. Youll 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 Radiotherapy treats cancer by using high-energy X-rays to destroy cancer cells while doing as little harm as possible to normal cells. Theres 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; youll usually have it about 4 to 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 isnt possible to remove the sarcoma with an operation Radiotherapy is generally given every weekday (Monday to Friday). Each treatment takes a few minutes. Side effects Radiotherapy isnt 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 thats 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. If youre looking for information about soft tissue sarcomas in people of all ages, read our general soft tissue sarcoma information. Living with a soft tissue sarcoma This information is about life after having surgery for a soft tissue sarcoma. You may find it useful to read the information about surgery first. Life after limb-sparing surgery The long-term effects of limb-sparing surgery depend on which part of your body is affected and what kind of operation you have. The best person to ask about your operation is your surgeon. After limb-sparing surgery the limb might not work as well as it used to. Physiotherapy is an important part of your recovery. Youll be given exercises to do to help you get your limb working as well as possible. These can be hard work, but its important to keep going with them. Joint replacements If youve had a joint replacement, youll be able to walk and swim and do most of the things you could do before, but your doctor might advise you not to play high-impact sports like hockey, football, tennis or rugby. These activities could damage or loosen the new joint. Check with your surgeon about any special instructions they may have for what activities you can do. If youve had a shoulder replacement you might find it harder to lift your arm above your shoulder. After any kind of joint replacement, you will be given physiotherapy. Its very important to do the exercises your physiotherapist shows you so that you get as much movement back as possible. Life after amputation After amputation most people have an artificial limb, called a prosthesis. There are artificial limbs designed to let you do all types of physical activities, including walking, swimming, running, cycling and playing sports. Different types of prosthesis let you do different things. Some people have one for wearing day-to-day, and an extra one specially designed for something like swimming or doing athletics. How will I feel? You might feel lots of different emotions. You might be tearful, angry, fed up or depressed at times. You might think youve lost all your confidence and that youll never be able to live a normal life or be in a relationship. These feelings are normal, and its important that you get support to help you cope with them. You could talk to: family or friends a counsellor  this can be arranged by your doctor or nurse other young people in a similar situation Things will be tough as you get used to living with an amputation, but help is available. Other peoples reactions can be hard to cope with, too. You might be worried about what your friends think or how theyre going to treat you. The thought of going back to school, college or work can be scary. Even people in your family who you are close to might not know what to say or do. Others might say things that sound stupid or seem hurtful. Try to choose a couple of really close relatives or friends you can call on when things get you down. You might also find it useful to talk to someone outside your close circle, like a counsellor. Most people find it helps to talk about how theyre feeling or whats on their mind. If youre looking for information about soft tissue sarcomas in people of all ages, read our general soft tissue sarcoma information. 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