Submit request or call to make an appointment.

Norton Children’s Cancer Institute

Talk to a member of our care team about advanced pediatric cancer treatment.

Rhabdomyosarcoma is the most common soft tissue cancer in children, typically affecting the muscles. It can occur anywhere in the body. It’s a fast-growing cancer that can spread to other parts of the body.

Rhabdomyosarcoma (sometimes called “rhabdo” for short) develops most frequently in children ages 2 to 6 and teens ages 15 to 19.

Children under age 6 tend to get a variety called embryonal rhabdomyosarcoma, which usually starts in the head and neck area, genitals or urinary tract. Most cases of embryonal rhabdomyosarcoma respond well to treatment.

Alveolar rhabdomyosarcoma is another variety that is seen more frequently in teens. It most often affects the arms or legs, chest, or abdomen. It is harder to treat than the embryonal variety.

Rhabdomyosarcoma symptoms can be hard to spot. There may be a painless lump on the body, but if the tumor is deep within the body it causes few, if any, symptoms at first.

If in the head, rhabdomyosarcoma may cause headaches, eye bulging or a droopy eyelid. In the urinary system, rhabdomyosarcoma can cause blood to appear in urine or stool. If the tumor presses on a nerve, there may be some tingling or weakness in the area.

Like many childhood and adolescent cancers, rhabdomyosarcoma can start with vague symptoms that can be easily overlooked or attributed to other causes. Consulting with a pediatric cancer specialist offers the best opportunity for early diagnosis and successful treatment.

Rhabdomyosarcoma typically has no known cause. However, it is a risk for kids who inherit a gene mutation that is part of a family cancer syndrome. These mutations help explain why cancer seems to run in families. Particularly large newborns may have an increased risk for embryonal rhabdomyosarcoma.

Treating rhabdomyosarcoma requires experienced and skilled oncologists. Rhabdomyosarcoma in children has the best chance of being cured when it’s treated by pediatric cancer specialists. Young adults may benefit from treatment at a children’s hospital instead of an adult-service hospital because of the care team’s expertise specifically in childhood diseases.

The board-certified and fellowship-trained oncologists at Norton Children’s Cancer Institute, affiliated with the UofL School of Medicine, come together at regular conferences to share viewpoints from various perspectives that help determine the best course of treatment. It’s like getting second, third and fourth opinions all at once.

By staying at the forefront of research, our physicians are experienced with newly approved therapies for rhabdomyosarcoma and can provide access to clinical trials of experimental treatments.

Diagnosing and Treating Rhabdomyosarcoma in Children

The physician will start with a physical exam and detailed health history. Other tests will be ordered depending on where the suspected cancer is in the body.

X-ray images may be taken to get more information about the tumor. A CT scan and MRI can provide a more detailed look at the tumor, its size and depth.

Positron emission tomography (PET) can find malignant cells. During a PET scan, a small amount of radioactive sugar is injected. Malignant cells use more sugar than normal cells, so they will appear brighter in the picture.

A bone scan can uncover rapidly dividing cells with the help of a small amount of radioactive material injected into a vein.

Bone marrow, blood and a small bit of bone may be removed from the hip bones for a pathologist to examine for signs of cancer.

Cerebrospinal fluid may be collected from the spinal column with a lumbar puncture. A sample of the fluid is examined under a microscope by a pathologist for signs of cancer.

Based on the results of tests like these, the physician may choose to perform a biopsy. Either surgically or with a needle, a sample of the tumor is removed for examination by a pathologist.

Treating rhabdomyosarcoma in children depends on whether the cancer has spread and, if so, how far. Another factor will be whether any cancer cells remain after surgery to remove the tumor.

Treatments for rhabdomyosarcoma in children include surgery, radiation therapy and chemotherapy. Radiation therapy and chemotherapy are used to shrink the tumor before surgery, after surgery or both.

New types of treatment could include immunotherapy or targeted therapy.

The Norton Children’s Difference

Norton Children’s Hospital’s cancer care program is one of the oldest oncology programs in the U.S. that has been continuously accredited by the American College of Surgeons’ Commission on Cancer. Backed by nearly 60 years of pediatric expertise, we have a proven cancer care team of more than 200 leading cancer specialists, including oncologists, surgeons, nurses, social workers, chaplains, behaviorists, therapists and pharmacists. This skilled, multidisciplinary team is entirely focused on the needs of your child and family.

In addition, we are home to:

  • Kentucky’s leading multidisciplinary pediatric brain tumor program
  • Kentucky’s only pediatric apheresis and pediatric photopheresis programs
  • An immunotherapy program
  • One of the country’s largest sickle cell anemia treatment programs
  • Kentucky’s leading Adolescent and Young Adult Program and Transition Clinic
  • Kentucky’s only CAR-T cell therapy treatment for pediatric patients
  • Life after cancer survivorship program
  • Pediatric bleeding and clotting program (hemostasis and thrombosis)

Related Stories

Osteosarcoma isn’t slowing down this Kentucky teen
Effects of pediatric brain tumors on vision
Tests for finding brain tumors in children
After 4-year battle with neuroblastoma, Louisville girl is cancer-free