What is rhabdomyosarcoma in children?

Rhabdomyosarcoma is a type of cancer. It starts in cells that should grow into skeletal muscle cells. Skeletal muscles control voluntary muscle movements. These are movements we can control. This rare cancer is most common in children under age 10. It can start anywhere in the body. The most common places are:

• Head and neck, such as near an eye, in the throat, or in the sinuses

• Urinary and reproductive organs, such as the bladder, prostate gland, or any female organs

• Arms and legs

• Chest and belly (abdomen)

There are 2 main types of rhabdomyosarcoma:

• Embryonal is the most common type. It’s most common in young children.

• Alveolar is more common in older children and teens. This type grows fast. It’s more likely to spread to other parts of the body or metastasize.

What causes rhabdomyosarcoma in a child?

The exact cause of rhabdomyosarcoma is not known.

Which children are at risk for rhabdomyosarcoma?

Some health conditions that are passed down, or inherited, through families increase a child's risk. But the risk is still low, even if a child has 1 of these rare diseases. These include:

• Li-Fraumeni syndrome

• Neurofibromatosis type 1

• Beckwith-Wiedemann syndrome

• Costello syndrome

• Dicer1 syndrome

• Noonan syndrome

What are the symptoms of rhabdomyosarcoma in a child?

Symptoms depend on where the tumor is and how big it is. There may be no symptoms until the tumor is very large. The first sign might be a lump or swelling that hurts. Other symptoms depend on where the tumor starts.

A growth near the eye can cause:

• A bulging eye

• Crossed eyes

• Vision problems

A growth in the ear or sinuses can cause:

• Ear pain

• Bleeding or drainage from the ear

• Nose bleeds

• Headache

• Sinus congestion

A growth in the urinary or reproductive organs can cause:

• Bloody pee

• Trouble peeing

• Pain when peeing

• Pain when pooping

• Vaginal bleeding

• Testicles that seem to grow too fast

A growth in the belly (abdomen) can cause:

• Pain

• Vomiting

• Trouble pooping (constipation)

A growth in the arm or leg can cause:

• A lump or swelling that might or might not hurt

• A lump or swelling that doesn't go away or gets bigger over time

When the tumor is big or the cancer has spread, symptoms of advanced rhabdomyosarcoma may include:

• Bone pain

• Constant cough

• Weakness

• Weight loss

The symptoms of rhabdomyosarcoma are a lot like those of other, more common, health conditions. Make sure your child sees a healthcare provider to find out what's causing these problems.

How is rhabdomyosarcoma diagnosed in a child?

Your child's healthcare provider will ask about your child's health history and symptoms. Your child will be examined. You may be referred to a child cancer specialist (pediatric oncologist). Some of these tests will be needed:

• Blood and urine tests. Blood and urine are sent to a lab for testing.

• X-ray. An X-ray uses a small amount of radiation to take pictures of bones and other organs.

• CT scan. This test uses a series of X-rays and a computer to make detailed images of the inside of the body.

• MRI. This test uses large magnets, radio waves, and a computer to make detailed images of the inside of the body.

• Bone scan. A small amount of dye is put into a vein. The whole body is then scanned. The dye shows up in areas where there may be cancer.

• Positron emission tomography (PET) scan. For this test, a radioactive sugar is put into the bloodstream. Cancer cells use the sugar faster than normal cells, so more of it collects in cancer cells. A special camera is then used to scan the whole body and see where the radioactive sugar is. A PET scan can sometimes show cancer in different parts of the body, even when they can’t be seen by other tests. This test is often done with a CT scan (called a PET/CT).

• Tumor biopsy. A small piece (sample) of the tumor is taken out for testing. It may be taken out with a needle or by a surgical cut (incision). It's tested for cancer cells. A biopsy is the only way to know for sure if the tumor is cancer. If it is, tests will show details about the cancer, such as the kind of rhabdomyosarcoma it is and certain gene changes found in the cancer cells.

• Bone marrow aspiration or biopsy. Bone marrow is found in the center of certain bones. It’s where blood cells are made. A small amount of bone marrow may be taken out. This is called aspiration. Or solid bone marrow tissue may be taken. This is called a core biopsy. Bone marrow is usually taken from the back of the hip bone. This test may be done to see if there are cancer cells in the bone marrow.

• Lumbar puncture. A thin needle is put in between the bones of the lower back and into the spinal canal. This is the area around the spinal cord. It carries cerebrospinal fluid (CSF), the fluid around the brain and spinal cord. A small amount of CSF is taken out for testing. This is done to check for cancer cells in the brain and spinal cord. This test may be done for rhabdomyosarcoma of the head and neck.

Talk with your child's healthcare provider about what tests are needed, why they're needed, and how they're done. Testing is used to learn more about your child's overall health and the cancer.

Part of diagnosing cancer is called staging. Staging is the process of seeing if the cancer has spread and where it has spread. Staging helps to decide the best treatment. There are different ways of staging cancer, but most range from stage 1 to stage 4. Stage 1 is the lowest and means the cancer is in only 1 site. Stage then goes up to stage 4. Stage 4 means the cancer has spread to other parts of the body far from where it started. Talk with your child's healthcare provider about the stage of your child's cancer and what it means.

How is rhabdomyosarcoma treated in a child?

Treatment depends on where the cancer is, the stage, and other factors. Rhabdomyosarcoma can be treated with any of these:

• Surgery. The goal of surgery is to remove all of the tumor. This is called resection. The surgery will be planned to limit changes in how your child's body looks and works. A surgeon who specializes in the body area of tumor growth may be needed. This may be a head and face (craniofacial) surgeon, or an ear, nose, and throat (otolaryngologist) doctor. It may be a brain surgeon (neurosurgeon) or bone doctor (orthopedist). Or it may be another type of specialist. 

• Chemotherapy. These are strong medicines that kill cancer cells. Chemo is always used to treat rhabdomyosarcoma. Some medicines may be given by mouth. But most are put right into the blood through a vein (IV).

• Radiation therapy. This treatment uses high-energy X-rays or other types of radiation to kill cancer cells or stop them from growing. It may be used when a tumor is hard to remove with surgery. Radiation therapy is often given along with chemotherapy after surgery. This is done to kill any cancer cells left behind to help keep the cancer from coming back.

• Clinical trials. Ask your child's healthcare provider if there are any treatments being tested that may work well for your child. Most children with cancer are treated as part of a clinical trial. This way they get the best treatment available, as well as treatments that may be even better.

• Supportive care. Cancer and cancer treatment can cause side effects. Medicines and other treatments can be used for pain, fever, infection, nausea, and vomiting. Managing and even preventing side effects is part of good cancer treatment. You may also hear this called palliative care.

With any cancer, the chances of a cure (prognosis) depend on a number of things. Keep in mind:

• Getting medical treatment right away is important for the best outcomes, or prognosis. Cancer that has spread is harder to treat.

• Ongoing follow-up care during and after treatment is needed.

• New treatments are being tested to improve outcomes and to lessen side effects.

What are possible complications of rhabdomyosarcoma in a child?

Short-term side effects are common. Most of them can be controlled, and some can be prevented. They go away over time after treatment ends. They can include things like:

• Problems with the general anesthesia used for surgery

• Infection

• Easy bleeding and bruising

• Feeling very tired (fatigue)

• Nausea and vomiting

• Hair loss

• Mouth sores

• Diarrhea

• Skin changes

A child may also have long-term side effects or complications from the tumor or from treatment. It depends on where the tumor is and the kinds of treatments needed. Some of these may not show up until many years later. They may include:

• Damage to the brain or nervous system that causes problems with coordination, muscle strength, speech, or eyesight

• Delayed growth and development

• Learning problems

• Trouble having children (infertility)

• The cancer comes back (recurrence)

• Other kinds of cancer later in life

How can I help my child live with rhabdomyosarcoma?

A child with rhabdomyosarcoma needs ongoing care. Your child will be seen by oncologists and other healthcare providers to treat any late effects of treatment and to watch for signs or symptoms of the tumor returning. Your child will be checked with imaging tests and other tests. And your child may see other healthcare providers for problems from the tumor or from treatment. For instance, your child may see an eye care provider (ophthalmologist) for vision problems.

Your child may need therapy to help with movement and muscle strength. This may be done by physical and occupational therapists. If your child's speech is affected, your child may need help from a speech therapist. Your child may also need the help of other therapists for learning or emotional problems. 

You can help your child manage treatment in many ways. For instance:

• Your child may have trouble eating. A dietitian may be able to help.

• Your child may be very tired. You can help balance rest and activity. Encourage your child to get some exercise. This is good for overall health. And it may help to lessen tiredness.

• Get emotional support for your child. A counselor or child support group can help.

• Make sure your child goes to all follow-up appointments.

One of the key things you can do is talk with your child's treatment team about any changes in your child. You are the best person to notice changes in things like activity, speech, hearing, mood, sleep, eating, and attention or learning. Don't be afraid to share any concerns or problems with the team. You are a key part of getting your child the care they need.

When should I call my child’s healthcare provider?

Your child's healthcare provider will talk with you about signs to watch for and when to call. You may be told to call if your child has:

• Symptoms that get worse

• New symptoms

• Signs of infection, such as a fever or chills

• Side effects from treatment that affect your child's daily activities or don't get better with treatment

Know how to get help after office hours and on weekends and holidays.

Key points about rhabdomyosarcoma in children

• Rhabdomyosarcoma is a rare type of cancer that starts in the cells that develop into skeletal muscle cells.

• It can start almost anywhere in the body. The most common places are the head and neck; urinary and reproductive organs; arms and legs; and chest and belly.

• Symptoms depend on the size of the tumor and where it is. A lump or swelling, pain, bleeding, and trouble urinating or having bowel movements are some symptoms.

• Tests include imaging studies and biopsy of the tumor.

• Treatment includes surgery, chemotherapy, and sometimes radiation therapy.

• Ongoing follow-up care during and after treatment is needed.

Next steps

Tips to help you get the most from a visit to your child’s healthcare provider:

• Know the reason for the visit and what you want to happen.

• Before your visit, write down questions you want answered.

• At the visit, write down the name of a new diagnosis, and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you for your child.

• Know why a new medicine or treatment is prescribed and how it will help your child. Also know what the side effects are.

• Ask if your child’s condition can be treated in other ways.

• Know why a test or procedure is recommended and what the results could mean.

• Know what to expect if your child does not take the medicine or have the test or procedure.

• If your child has a follow-up appointment, write down the date, time, and purpose for that visit.

• Know how you can contact your child’s provider after office hours. This is important if your child becomes ill and you have questions or need advice.