Rhabdomyosarcoma - Childhood: Follow-Up Care

Approved by the Cancer.Net Editorial Board, 10/2018

ON THIS PAGE: You will read about your child’s medical care after cancer treatment is finished and why this follow-up care is important. Use the menu to see other pages.

Care for children diagnosed with cancer does not end when active treatment has finished. Your child’s health care team will continue to check to make sure the cancer has not returned, manage any side effects, and monitor your child’s overall health. This is called follow-up care. All children treated for cancer, including rhabdomyosarcoma, should have life-long, follow-up care.

Your child’s follow-up care may include regular physical examinations, medical tests, or both. Doctors want to keep track of your child’s recovery in the months and years ahead.  

Learn more about the importance of follow-up care.

Watching for recurrence

One goal of follow-up care is to check for a recurrence. Cancer recurs because small areas of cancer cells may remain undetected in the body. Over time, these cells may increase in number until they show up on test results or cause signs or symptoms.

During follow-up care, a doctor familiar with your child’s medical history can give you personalized information about the risk of recurrence. Your doctor will ask specific questions about your child’s health. Some children may have blood tests or imaging tests as part of regular follow-up care, but testing recommendations depend on several factors, including the type and stage of cancer originally diagnosed and the types of treatment given.

The anticipation before having a follow-up test or waiting for test results can add stress to you or a family member. This is sometimes called “scan-xiety.” Learn more about how to cope with this type of stress.

Managing long-term effects of childhood cancer

Sometimes side effects may linger beyond the active treatment period or occur months or years later. These are called long-term or late-effects. These effects can include physical (such as heart and lung problems or second cancers), cognitive (memory, attention, or learning difficulties), and/or emotional problems (such as anxiety or depression).

Children treated for rhabdomyosarcoma should be monitored for signs or symptoms that the cancer has come back. Talk with your child’s doctor about what to watch for in between appointments. If there is a recurrence, it is most common within the first 3 years after diagnosis. During this time, routine monitoring should include regular physical examinations and imaging studies at least every 3 to 6 months for the first 2 years after completing treatment. Children should be routinely monitored for their physical growth patterns, development of sexual maturity, and bladder function. If your child received radiation therapy to the eye or mouth, regular eye examinations and dental examinations are important.

Children with a tumor on an arm or leg may have decreased growth in the affected limb and differences in limb length as the child ages. This should be monitored, and an evaluation by an orthopedist (bone doctor) is recommended if this develops.

Based on the type of treatment your child received, the doctor will determine what examinations and tests are needed to check for long-term side effects, such as problems with their physical growth and development, bladder problems, infertility, and the possibility of a secondary cancer, such as bone sarcoma, a brain tumor, or acute myeloid leukemia (AML). Follow-up care should address your child’s quality of life, including any developmental, cognitive, or emotional concerns.

The COG has studied the physical and psychological effects that childhood cancer survivors face. Based on these studies, the COG has created recommendations for long-term follow-up care for childhood, adolescent, and young adult cancer survivors that can be found on a separate website: www.survivorshipguidelines.org.

Keeping a child’s personal health record

You are encouraged to organize and keep a personal record of your child’s medical information. The doctor will help you create this. That way, as the child enters adulthood, he or she has a clear, written history of the diagnosis, the treatment given, and the doctor’s recommendations about the schedule for follow-up care. ASCO offers forms to help keep track of the cancer treatment your child receives and develop a survivorship care plan when treatment is completed.

Some children continue to see their oncologist, while others transition back to the care of their family doctor or another health care professional. This decision depends on several factors, including the type and stage of cancer, side effects, health insurance rules, and your family’s personal preferences. Talk with the health care team about your child’s ongoing medical care and any concerns you have about his or her future health.

If a doctor who was not directly involved in your child’s cancer care will lead the follow-up care, be sure to share the cancer treatment summary and survivorship care plan forms with him or her, and with all future health care providers. Details about the specific cancer treatment given are very valuable to the health care professionals who will care for your child throughout his or her lifetime.

The next section in this guide is Survivorship. It describes how to cope with challenges in everyday life after a cancer diagnosis. Use the menu to choose a different section to read in this guide.