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This information is about a specific type of soft tissue sarcoma known as leiomyosarcoma (LMS). It should ideally be read with our general information about soft tissue sarcomas.
A leiomyosarcoma belongs to a group of cancers called soft tissue sarcomas. Sarcomas are cancers that develop in the supporting or connective tissues of the body (such as muscle, fat, nerves, blood vessels, bone, and cartilage). They are rare. Approximately 1,200–2,000 people will be diagnosed with a sarcoma each year in the UK. Most people with leiomyosarcoma will be over the age of 50.
Leiomyosarcomas are one of the commoner types of sarcoma to occur in adults. They start from cells in a type of muscle tissue called smooth muscle.
Smooth muscles are involuntary muscles which we have no control over. They are found in the walls of muscular organs like the heart and stomach as well as the walls of blood vessels throughout the body. This means that leiomyosarcomas can start anywhere in the body. Common places are the walls of the womb (uterus), the limbs, and the digestive system, particularly the stomach.
The exact cause of leiomyosarcoma is unknown, and research is ongoing to try and find out as much as possible about these tumours.
Very rarely, soft tissue sarcomas may also occur in an area that has previously been treated with radiotherapy for another type of cancer. The sarcoma will not usually develop until at least ten years after the radiotherapy treatment. Improvements in targeting radiotherapy mean that the risk of developing a sarcoma after radiotherapy treatment is very small.
Exposure to some types of chemicals may increase the risk of a person developing some sarcomas. The chemicals include vinyl chloride, which is used for making plastics, some types of herbicides (weedkillers) and dioxins.
People with early leiomyosarcoma often do not have any symptoms. Most leiomyosarcomas are diagnosed after a person develops symptoms. These may include:
If you notice any of the above, contact your GP, but remember that these symptoms can be caused by many things.
Usually you begin by seeing your family doctor (GP), who will examine you. You will be referred to a hospital specialist for any tests that may be necessary and for expert advice and treatment. The doctor at the hospital will take your full medical history, do a physical examination and take blood samples to check your general health.
The following tests are commonly used to diagnose a leiomyosarcoma. The tests you have will depend upon the part of the body that is being investigated. You may have had some of these tests already. If you are having investigations other than those listed, our nurses can give you further information.
Endoscopy This is the most common test used to diagnose problems in the stomach and oesophagus (gullet). Before an endoscopy, your stomach has to be empty so you will be asked not to eat or drink anything for at least four hours beforehand. Once you are lying comfortably on the couch you will usually be given a sedative, usually into a vein in your arm, to make you feel sleepy and to reduce any discomfort during the test. A local anaesthetic is then sprayed onto the back of your throat and the doctor passes an endoscope, (a flexible tube with a light and lens at the end) down the gullet into the stomach.
Photographs are taken of the stomach and a small sample of cells (a biopsy) can be taken for examination under a microscope. Sometimes the endoscopy tube has an ultrasound probe at the end, which allows an ultrasound scan to be taken of the stomach and surrounding structures. This is known as endoscopic ultrasound.
An endoscopy can be uncomfortable, but it is not painful. After a few hours, the effects of the sedative should have worn off and you will be able to go home. You should not drive for several hours afterwards and it is a good idea to arrange for someone to travel home with you. Some people have a sore throat after their endoscopy. This is normal and should disappear after a couple of days.
Hysteroscopy Using a small, thin, flexible tube containing a light and camera (hysteroscope), the doctor is able to look into the womb in order to take biopsies to be looked at under a microscope. Once you are lying on a couch, you will be given a local anaesthetic to numb the cervix (a hysteroscopy can also be done under general anaesthetic). The hysteroscope will then be inserted into your womb through your vagina.
A hysteroscopy may be uncomfortable but should not be painful. Some women may have mild cramping during the procedure and for a few days afterwards.
Ultrasound scan In this test sound waves are used to make up a picture of the abdomen and surrounding organs. It is done in the hospital's scanning department. You will be asked not to eat, and to drink clear fluids only (nothing fizzy or milky) for 4–6 hours before the scan. Once you are lying comfortably on your back a gel is spread over your abdomen. A small device like a microphone is then rubbed over the area. The sound waves are converted into a picture using a computer. The test is completely painless and takes 15–20 minutes.
CT (computerised tomography) scan A CT scan takes a series of x-rays that builds up a three-dimensional picture of the inside of the body. The scan is painless and takes from 10 to 30 minutes. CT scans use a small amount of radiation, which is very unlikely to harm you and will not harm anyone you come into contact with. You will be asked not to eat or drink for at least four hours before the scan.
You may be given a drink or an injection of dye that allows particular areas to be seen more clearly. For a few minutes this may make you feel hot all over. If you are allergic to iodine or have asthma, you could have a more serious reaction to the injection, so it is important to let your doctor know beforehand.
Most people are able to go home as soon as their scan is over.
MRI (magnetic resonance imaging) scan This test is similar to a CT scan, but uses magnetism instead of x-rays to build up cross-sectional pictures of your body. During the test you will be asked to lie very still on a couch inside a large metal cylinder that is open at both ends. The whole test may take up to an hour. It can be slightly uncomfortable and some people feel a bit claustrophobic during the scan. It is also very noisy, but you will be given earplugs or headphones to wear. A two-way intercom allows you to talk with the people controlling the scanner. If you have any metal implants (such as certain types of surgical clips, pacemakers, metal in the eye from previous accidents or trauma) it will not be possible for you to have this test.
Biopsy The results of the previous tests may make your doctor strongly suspect a diagnosis of cancer. The only way to be sure is to take some cells or a small piece of tissue from the affected area to look at under a microscope. This is called a biopsy. A fine needle is passed into the tumour through the skin after the area has been numbed using a local anaesthetic injection. CT or ultrasound may be used at the same time, to make sure that the biopsy is taken from the right place.
When the cells are looked at under a microscope, the pathologist will be able to tell whether they are benign (not cancerous) or malignant (cancerous). If a sarcoma is diagnosed, further tests may be done on the sample to try to find out exactly what type of sarcoma it is.
Grading refers to the appearance of the cancer cells under the microscope. The grade gives an idea of how quickly the cancer may develop. Grading of soft tissue sarcomas can sometimes be difficult, especially for the less common types. 'Low-grade' means that the cancer cells look very like the normal cells of the soft tissues. They are usually slow-growing and are less likely to spread. In high-grade tumours the cells look very abnormal. They are likely to grow more quickly and are more likely to spread.
The stage of a cancer is a term used to describe its size and whether it has spread beyond its original site. Knowing the particular type and the stage of the cancer helps the doctors to decide on the most appropriate treatment.
The following is a commonly used staging system for non-gynaecological leiomyosarcoma. (A different system is used for leiomyosarcoma arising in the gynaecological organs. Your specialist can explain more if you have this type of leiomyosarcoma):
Recurrence means that a soft tissue sarcoma has come back after it was first treated. It may come back in the tissues where it first started (local recurrence) or it may come back in another part of the body (metastasis).
The treatment for leiomyosarcoma depends on a number of things including your general health, and the size and position of the tumour within the body. The results of your tests will help your doctor to decide on the best type of treatment for you. They can then discuss this with you.
The usual treatment for a leiomyosarcoma is surgery, wherever possible, to remove the tumour. This may be followed by radiotherapy to reduce the chance of the cancer coming back.
Chemotherapy is also used for some leiomyosarcomas. This may be to try to reduce the chances of the leiomyosarcoma coming back, or to treat a leiomyosarcoma that has spread.
Treatment of sarcomas is discussed in more detail in our general information about soft tissue sarcomas.
Research into treatments for leiomyosarcoma is ongoing and advances are being made. Cancer doctors use clinical trials to assess new treatments.
You may be asked to take part in a clinical trial. If you decide to take part in a trial, your doctor must discuss the treatment with you so that you have a full understanding of the trial and what it means to take part. You may decide not to take part or to withdraw from a trial at any stage. You will then receive the best standard treatment available.
The need for practical and emotional support will vary from person to person and may depend on the treatment you receive and any side effects the treatment may cause. Your specialist will inform you of any potential side effects and how to deal with them before you agree to treatment.
Many different emotions may affect you. Anger, guilt, anxiety and fear are some of the most common feelings that people have. You may find yourself tearful, restless and unable to sleep. You may have feelings of hopelessness and depression. These are all normal reactions, but it is often difficult and distressing to admit to them.
You do not have to cope with these feelings on your own and there are people available to help you. Some hospitals have their own emotional support services with specially-trained staff, and some of the nurses on the ward will have received training in counselling. Some people feel more comfortable talking to a counsellor outside the hospital environment or to a religious leader.
Our cancer support service can put you in touch with counselling services in your area or see our list of counselling organisations.
You may also find it helpful to talk to your family and friends about how you feel.
This section has been compiled using information from a number of reliable sources, including:
For further references, please see the general bibliography.
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