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
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
- 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
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
The exact cause of rhabdomyosarcoma is not known.
Some health conditions that are
passed down, or inherited, through families increase a child's risk. But the risk
still low, even if a child has one of these rare diseases. These include:
- Li-Fraumeni syndrome
- Neurofibromatosis type 1 (NF1)
- Beckwith-Wiedemann syndrome
- Costello syndrome
- Dicer1 syndrome
- Noonan syndrome
Symptoms depend on where the tumor
is and how big it is. There may be no symptoms until the tumor is very large. The
sign might be a lump or swelling that hurts. Other symptoms depend on where the tumor
A growth near the eye can
- A bulging eye
- Crossed eyes
- Vision problems
A growth in the ear or sinuses can
- Ear pain
- Bleeding or drainage from the ear
- Nose bleeds
- Sinus congestion
A growth in the urinary or
reproductive organs can cause:
- Bloody urine
- Trouble passing urine
- Pain when passing urine
- Pain with bowel movements
- Vaginal bleeding
- Testicles that seem to grow too fast
A growth in the belly (abdomen) can
- Trouble having bowel movements
A growth in the arm or leg can
- A lump or swelling that might or might not hurt
- A lump or swelling that doesn't go away or gets bigger over
When the tumor is big or the cancer
has spread, symptoms of advanced rhabdomyosarcoma may include:
- Bone pain
- Constant cough
- Weight loss
The symptoms of rhabdomyosarcoma
are a lot like those of other, more common, health conditions. Make sure your child
a healthcare provider to find out what's causing these problems.
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).
of these tests will be needed:
Blood and urine tests. Blood and urine are sent to a lab
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
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
the hip bone. This test may be done to see if there are cancer cells in the bone
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.
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
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.
Treatment depends on where the
cancer is, the stage, and other factors. Rhabdomyosarcoma can be treated with any
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
ear, nose, and throat (otolaryngologist) doctor. It may be a brain surgeon
(neurosurgeon) or bone doctor (orthopedist). Or it may be another type of
Chemotherapy. These are strong medicines that kill cancer
cells. Chemo is always used to treat rhabdomyosarcoma. Some medicines may be given
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
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
- Getting medical treatment right away
is important for the best outcomes, or prognosis. Cancer that has spread is harder
- Ongoing follow-up care during and after treatment is needed.
- New treatments are being tested to
improve outcomes and to lessen side effects.
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
- Problems with the general
anesthesia used for surgery
- Easy bleeding and bruising
- Feeling very tired (fatigue)
- Nausea and vomiting
- Hair loss
- Mouth sores
- Skin changes
A child may also have long-term
side effects or complications from the tumor or from treatment. It depends on where
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
- The cancer comes back
- Other kinds of cancer later in
A child with rhabdomyosarcoma needs
ongoing care. Your child will be seen by oncologists and other healthcare providers
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
may see other healthcare providers for problems from the tumor or from treatment.
instance, your child may see an eye care provider (ophthalmologist) for vision
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
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
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
getting your child the care they need.
When to Call a 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
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
- 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.
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
- 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.