AUA Summit - What is Rhabdomyosarcoma (RMS or "rhabdo")?


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What is Rhabdomyosarcoma (RMS or "rhabdo")?

Rhabdomyosarcoma is a rare and sometimes deadly cancer that affects children. Embryonal rhabdomyosarcoma often starts in the genital and urinary organs. It affects soft, connective tissue, and can hit many systems of the body.

What are its symptoms? How should it be treated? The information here can help you when you talk with your urologist or oncologist.

Key Statistics

Early in the development of an embryo, cells called rhabdomyoblasts begin to form. These become skeletal muscles. These cells can form abnormally into RMS.

This cancer, from embryonal RMS cells, is much more common in children than adults. There are two peaks when it’s found. Either from ages two to four, or from ages 15 to 19.

About 3 out of 100 of all childhood cancers are RMS. Of these, about 20 out of 100 first find it in the genitourinary tract (genitals or urinary). RMS in the genitourinary tract can affect the bladder, prostate, vagina and paratesticular areas.

What happens normally?

Children should not have large lumps in their belly, genitals or rectum. They should be able to urinate without straining and with no sign of blood.


Symptoms depend on where the cancer is found. Also, whether or not it has spread to other locations.

This cancer is usually not painful. But it can grow large before it’s diagnosed. It can cause bleeding, trouble urinating and large, growing lumps.

  • RMS of the bladder or prostate can make it hard to urinate and show blood.
  • RMS in the vagina may cause a protruding lump or a smelly, bloody discharge.
  • RMS in the paratesticular area causes a swollen, painless lump in the scrotum.


Your child's doctor will order screening tests to properly diagnose RMS. An ultrasound can confirm tumors. After that, more tests will be done. The following tests can show exactly if and where there are tumors:


RMS is treated with combination of surgery, chemotherapy and radiation. Chemotherapy drugs are given in the hospital (by IV or orally) to kill cancer cells everywhere. Radiation is a series of x-ray treatments given to kill cancer cells in a specific area. Surgery is intended to remove the entire cancer, part of it, or for diagnosis by obtaining a biopsy of the lump or an involved lymph node. Exactly how each type of treatment helps to cure this cancer is unclear.

Since rhabdomyosarcoma is a rare cancer, patients should aim to find an expert. Ideally, you can find one in a nearby Children’s Oncology Group (COG). Clinical Trials may be a helpful option for a child with RMS.

Talk with an oncologist or urologic oncologist who has experience with treating this cancer.

Treating Bladder and Prostate RMS Tumors

First, biopsy of the bladder or prostate mass is needed to establish the diagnosis. Surgery has shifted from removal of the organs to a more conservative organ-sparing approach with similar outcomes. CT scan will show if cancer has spread to local lymph nodes. In this case open biopsy and removal of these nodes for examination will follow. Second, chemotherapy is used to shrink tumors. There are many helpful chemo drugs for this:

  • Vincristine
  • Dactinomycin
  • Cyclophosphamide or ifosfamide

After chemotherapy, assessment of residual cancer will determine if radiation therapy will be needed. Not all residual lumps necessarily contain cancer cells. Second-look surgery and biopsy may be needed to know if residual cancer cells are present. If possible, only a portion of the bladder is removed (partial cystectomy). If the bladder is completely removed, then reconstruction is necessary. During the same operation, part of the intestine is reshaped to store urine. Sometimes a colostomy (bag for stool) and/or a urostomy (bag for urine) are used.

Treating Vaginal RMS

In 8o% of vaginal RMS cases, limited surgery and chemotherapy can cure this cancer. After chemotherapy, a biopsy can confirm if the cancer has been treated.

Treating Paratesticular RMS

This is mostly found in very young infants, or in teens. To rule out testis cancer in teens, a blood test should be done.

CT scan will show if RMS has spread to the lymph nodes. CT scan is accurate in the diagnosis of lymph node involvement in patients less than 10 years of age. Patients who are older than 10 years, surgery to remove all lymph nodes from the abdomen is necessary (in the side of tumor only) even if their CT scan showed no lymph node involvement. This surgery is called "retroperitoneal lymph node dissection or RPLND."

After Treatment

Surgery, chemotherapy and radiation all cause side effects. It helps to learn what to expect before you start treatment. Talk with your health care providers about how to manage side effects first. Some things to think about:

  • If part of the bladder is removed, it holds less urine. Some people find they will have to go to the bathroom more often.
  • Radiation to the pelvis can harm nerves to the bladder and prostate. This may lead to incontinence (leaking). The sphincter (a muscle that keeps urine in the bladder) may become weak.
  • If the prostate is removed, boys may have incontinence (leaking) and impotence (inability to have an erection). A surgeon with experience can limit these problems. Long-term after-care can help.
  • If part of the vagina is removed, some girls may lose sexual sensation. Not all will.
  • If retroperitoneal lymph nodes are removed, a boy may not ejaculate and have fertility problems. A surgeon with experience can help. Some teens opt to “bank” sperm before surgery. This decision should be carefully discussed with the family.

In any case, after-care is important. A second-look operation is helpful to check for any remaining problems. Patients will need regular CT scans and biopsies over time.

The goal of treatment and after-care is to learn if the entire cancer is gone.

Frequently Asked Questions

Are there any long-term risks from chemotherapy and radiation for paratesticular RMS patients?

People who have high doses of chemotherapy or radiation are at risk for other cancers. Risks are higher for lymphoma, leukemia and, sarcoma. This occurs in a small number of patients after 10 years of recovery. Long-term follow up care is helpful.

Chemotherapy can cause the testes to be small and sperm count to be low. Testosterone replacement is not often needed.

What have studies taught doctors about the treatment of rhabdomyosarcoma?

Scientists have learned that radical surgery to remove organs and tissues is not needed. The best way to treat RMS is with a combination of surgery, chemotherapy and radiation. This lowers the risks of incontinence and sexual dysfunction.

Are there controversies in rhabdomyosarcoma treatment?

Combination therapy can cure rhabdomyosarcoma. But scientists and oncologists don't understand the exact role of each type of treatment. Research to learn the best treatment for a better quality of life is going on.

Can paratesticular rhabdomyosarcoma appear later in life?

Paratesticular rhabdomyosarcoma can show up in adult men. CT scans are not the best way to find if retroperitoneal lymph nodes were involved. A large study from Indiana University suggests that adult patients should have their lymph nodes removed, then get chemotherapy.

If rhabdomyosarcoma affects the vagina, will treatment alter sexual function?

If part of the vagina is removed during surgery, the uterus and ovaries are untouched. Often, girls will grow up with normal sexual function.

Questions to ask your Health Care Provider

  • What kind of rhabdomyosarcoma does my child have?
  • Has the tumor spread?
  • Please explain how this cancer works and how it affects my child?
  • What tests will we need to confirm the diagnosis?
  • How much experience do you have treating this type of cancer?
  • What are our treatment options?
  • How do you decide on the best treatment plan?
  • What are the risks and side effects of each treatment?
  • Are there any clinical trials we might want to consider?
  • How long will treatment last? What will it be like? Where will it be done?
  • How long will recovery take?
  • What is the chance my child's cancer will be cured?
  • What will we do if the treatment doesn't work? Or, if the cancer comes back?
  • How will treatment affect our child's future?
  • Could treatment affect my child's ability to have children later on?
  • Can we have treatment in a way that doesn't get in the way of our schedule (school, work, etc.)?
  • What type of follow-up and rehab will be needed after treatment?
  • Can you give me the names of experienced doctors for a second opinion?

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