Early Detection, Diagnosis, and Staging of Rhabdomyosarcoma

Can rhabdomyosarcoma be found early?

Rhabdomyosarcoma (RMS) is not common, and at this time there are no recommended screening tests for these cancers. Screening is testing for a disease such as cancer in people who do not have any symptoms.

Families known to carry inherited conditions that raise the risk of RMS (listed in Rhabdomyosarcoma Causes, Risk Factors, and Prevention) or that have several family members with cancer (particularly childhood cancers) should talk with their doctors about the possible need for more frequent checkups. It is not common for RMS to run in families, but close attention to possible early signs of cancer might help find it early.

What are the signs and symptoms of rhabdomyosarcoma?

RMS can lead to symptoms that cause a child to go to the doctor. Symptoms from RMS depend on the location of the tumor. Symptoms can include:

• A lump in the neck, arms or legs
• Changes in vision
• Bleeding, especially vaginal bleeding or blood in the urine if a tumor is located near the bladder or reproductive organs
• Belly pain or swelling
• Sinus congestion or headaches

Most symptoms that might point to RMS, such as pain, swelling and lumps, can also have other causes. Most of these symptoms are not from cancer. But if they persist or do not go away after a week or so, it is important to have them checked by a doctor.

How is rhabdomyosarcoma diagnosed?

Diagnosing RMS often involves imaging tests, blood work and a biopsy of the tumor. If RMS is found, more detailed tests will be done on the tumor sample, and a bone marrow biopsy will be done to learn more about the RMS and if it has spread to decide how best to treat it.

Some of these tests are also used to track how well treatment is working.

Stages, risk groups, and outlook for childhood rhabdomyosarcoma

After a rhabdomyosarcoma diagnosis, many people want to understand what to expect. Doctors use information about a tumor’s location, stage (extent), whether or not it can be removed with surgery and gene changes to assign a risk group. Risk groups refer to how likely it is that the cancer might recur or come back after treatment. They are used to decide what treatment is best for each specific case.

Risk groups are important in estimating a child’s outlook (prognosis) for survival.

Survival rates are a way to measure how many people survive a certain type of cancer over time. Survival rates are often reported as 5-year survival rates, which refer to the percentage of children who live at least 5 years after their cancer diagnosis. Of course, many children live much longer than 5 years (and many are cured). Some people find this information helpful, while others prefer to focus more on treatment plans and next steps.