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Rhabdomyosarcoma (RMS) is a rare type of soft tissue sarcoma. Rhabdomyosarcoma grows in the muscles of the body we control ourselves. These are called voluntary muscles.
The most common parts of the body for rhabdomyosarcoma to develop are the:
- head and neck
- arms and legs
- central part of the body (trunk).
Rhabdomyosarcoma is more common in children and teenagers than in adults. The Children's Cancer and Leukaemia Group has more information about rhabdomyosarcoma in children.
There are different types of rhabdomyosarcoma:
This type of rhabdomyosarcoma often develops in the arms and legs. It is more like a high-grade sarcoma than other types of rhabdomyosarcoma. Because of this it is usually staged and treated like a fast growing soft tissue sarcoma.
This type of rhabdomyosarcoma is usually diagnosed in older children, teenagers and young adults. It often develops in the large muscles of the arms and legs. It can also develop in the chest or tummy (abdomen), pelvis, and head or neck.
This type of rhabdomyosarcoma is most common in young children. It often develops in the head and neck, especially in the tissues around the eye. This is called orbital rhabdomyosarcoma. Embryonal rhabdomyosarcoma can also develop in the bladder, vagina, testicles and around the prostate. The prostate is a small gland below the bladder that helps make semen.
Fusion positive or negative rhabdomyosarcoma
Doctors may describe rhabdomyosarcoma as either:
- fusion positive, which is when the sarcoma cells have a gene made by fusing (joining) parts of 2 different genes.
- fusion negative, which means there is no fused gene.
Understanding these genetic changes in the cancer cells helps doctors to decide the best treatment.
Rhabdomyosarcoma can start in any part of the body. The symptoms depend on the part of the body that is affected.
Rhabdomyosarcoma in the head or neck may cause:
- a lump that you can see or feel, which may or may not be painful
- a blockage and discharge from the nose
- changes in swallowing or hearing
- the eye to appear swollen or pushed forward.
In the tummy (abdomen), symptoms include:
- pain in the tummy (abdomen)
- difficulty pooing (constipation).
If rhabdomyosarcoma develops in the bladder, vagina or testicles, it might cause:
- blood in your pee (urine)
- difficulty peeing
- needing to pee more frequently
- vaginal discharge
- swelling in a testicle.
These symptoms can be caused by conditions other than cancer. But if you notice any of these symptoms, get them checked by your GP.
The causes of rhabdomyosarcoma are unknown.
Rhabdomyosarcoma is slightly more common in people with rare inherited genetic conditions, such as Li-Fraumeni syndrome.
Soft tissue sarcomas may occur in an area that has previously been treated with radiotherapy for another type of cancer.
We have more information about possible risk factors for soft tissue sarcoma.
You usually start by seeing your GP, who will examine you. You may also have blood tests to check your general health and the number of cells in your blood (blood count).
If your GP thinks your symptoms could be caused by cancer they will refer you to a specialist doctor at the hospital.
At the hospital, the specialist doctor will ask you about your symptoms and your general health. They will also examine you and arrange some of the following tests:
A biopsy means the doctor takes a sample of cells from the area to be checked for cancer under the microscope. We have more information about having a biopsy in our information about diagnosing soft tissue sarcoma. Your doctor or specialist nurse will give you more information.
If rhabdomyosarcoma is diagnosed you might have further tests to find out if it has spread. These may include:
Bone marrow tests
A lumbar puncture
Our cancer support specialists or your specialist doctor or nurse can give you information about any tests we do not explain here.
Testing the cancer cells for genetic changes
The laboratory will also test cancer cells from the biopsy or surgery to look for genetic changes. These changes are called mutations. The results can tell doctors which treatment is likely to be helpful.
Waiting for test results can be a difficult time, we have more information that can help.
The stage of a cancer describes its size and whether it has spread from where it started. Your doctors use information about the stage of rhabdomyosarcoma to put you into a risk group. These range from low to very high. This helps your doctors plan the best treatment for you.
The staging and risk groups for rhabdomyosarcoma are complex. Your doctor or specialist nurse can give you information and answer your questions.
- Your risk group decides the treatment you have. Doctors work out your risk group based on:
- the type of rhabdomyosarcoma
- your age
- the size of the tumour and whether it has spread to the lymph nodes or other parts of the body
- whether the tumour can be completely removed with surgery (post-surgical stage)
- where in the body the tumour started (its site)
- whether the rhabdomyosarcoma is fusion positive or negative.
TNM stands for tumour, node and metastasis.
- T describes the size of the tumour.
- N describes whether the cancer has spread to the lymph nodes.
- M describes whether the cancer has spread to another part of the body, such as the liver or lungs (known as metastatic or secondary cancer).
Doctors put numbers after the T, N, and M that give more details about the size and spread of the cancer.
This is based on the size of the tumour and whether it can be completely removed. During the operation, the surgeon removes an area of healthy tissue (margin) around the tumour. Doctors look at the margin to see if it contains any cancer cells.
There are 4 post-surgical groups:
- Group I – the tumour has been completely removed.
- Group II – the tumour has been removed, but there are cancer cells in the margin or the lymph nodes.
- Group III – it has been possible to do a biopsy but the tumour could not be completely removed.
- Group IV – the cancer has spread to other parts of the body.
Some tumour sites are described as favourable. Treatment to these areas may be more successful. This includes:
- the area around the eye (orbit)
- some parts of the head and neck
- the tubes that drain bile from the liver to the small bowel (bile ducts)
- parts of the urinary system, including the bladder and the prostate gland.
Certain other tumour sites are described as unfavourable. Their treatment may be more complicated. Your doctor or specialist nurse can give you more information.
Risk groups for rhabdomyosarcoma
When your doctors have put all the staging information together, they can decide on your risk group. There are four risk groups:
- low risk
- standard risk
- high risk
- very high risk.
Your doctor or nurse will give you more information about your individual risk group and what it means for your treatment plan.
A team of specialists will meet to discuss the best possible treatment for you. This is called a multidisciplinary team (MDT). Because sarcomas are rare cancers, you should be referred to a specialist unit for treatment. This may mean you need to travel further to have your treatment.
Your treatment will depend on different things, including your general health and risk group. Your cancer doctor and specialist nurse will explain the different treatments and their side effects. They will also talk to you about the things you should consider when making treatment decisions.
You may have some of the following treatments.
Treatment often begins with chemotherapy. Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy the cancer cells. It can be given:
- before surgery, to shrink the tumour (neo-adjuvant chemotherapy)
- after surgery, to reduce the risk of the cancer coming back (adjuvant chemotherapy).
You usually have a combination of chemotherapy drugs. The drugs used and length of your treatment depend on the type and risk group of the rhabdomyosarcoma.
Chemotherapy is also sometimes given along with radiotherapy. This is called chemoradiation.
Surgery is used if the tumour can be removed without causing too much damage to nearby tissue or affecting your appearance.
The type of surgery depends on where in the body the rhabdomyosarcoma is. Your surgeon will talk to you about the operation and explain how it may affect you. The aim is to remove all of the tumour, along with an area of healthy tissue (margin). Sometimes the surgeon removes lymph nodes close to the sarcoma.
If there are cancer cells in the margin, you might need another operation to remove more tissue. Making sure the margins are clear reduces the risk of the cancer coming back.
Radiotherapy uses high-energy rays to destroy cancer cells. It can be given:
- before an operation, to shrink the tumour and make it easier to remove
- if the tumour cannot be completely removed with surgery – this could be because of its size or position in the body
- if there is a possibility of cancer cells being left behind after surgery.
Sometimes chemotherapy is given at the same time as radiotherapy (chemoradiation).
Proton beam therapy
Proton beam therapy is a type of radiotherapy that is sometimes used to treat rhabdomyosarcoma. It uses proton radiation rather than x-rays. Proton beams can be made to stop before they exit the area being treated. This is different to standard radiotherapy beams.
You may be offered some treatments as part of a clinical trial.
You will have regular check-up appointments at the hospital. Your doctor will examine you and ask about any side effects or symptoms. You will also have blood tests. You may also have an x-ray of your chest or CT scan. If you have any new symptoms between appointments, let your doctor or nurse know.
Sometimes side effects may continue or develop months or years after treatment. These are called late effects. Your cancer doctor or specialist nurse will explain more about any possible late side effects and what might help.
The effects of your treatment might affect how you think and feel about your body. Talk to your nurse if you have concerns about your body image.
Sex and fertility
Cancer and its treatment can sometimes have an effect on your sex life. If you are worried about this talk to your doctor or nurse. You can read about things that may help in our information on cancer and sex.
Some cancer treatments may affect your fertility. If you are worried about your fertility it is important to talk with your doctor before you start treatment. We have more information about:
- getting pregnant after treatment
- making someone else pregnant after treatment
- LGBTQ+ people and cancer treatment.
Well-being and recovery
Even if you already have a healthy lifestyle, you may choose to make some positive lifestyle changes after treatment.
Making small changes such as eating well and keeping active can improve your health and well-being and help your body recover.
Organisations such as Sarcoma UK can provide information and support. Cancer52 works to improve the quality of life for people with rare cancers. Macmillan is also here to support you. If you would like to talk, you can:
Below is a sample of the sources used in our rhabdomyosarcoma information. If you would like more information about the sources we use, please contact us at email@example.com
Gronchi A, Miah AB et al. Soft tissue and visceral sarcomas: ESMO-EURACAN-GENTURIS Clinical practice guidelines for diagnosis, treatment and follow-up. Annals of Oncology, 2021; 32, 11, 1348-1365 [accessed May 2022]
This information has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been reviewed by expert medical and health professionals and people living with cancer. It has been approved by senior medical editor Fiona Cowie, Consultant Clinical Oncologist.
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