Possible Late and Long-Term Side Effects of Treatments for Rhabdomyosarcoma

More children and teens with rhabdomyosarcoma (RMS) are now surviving this cancer. Doctors have learned that the treatment might affect children’s health later in life, so watching for health effects as they get older has become more of a concern in recent years.

It’s important to discuss what these possible effects might be with your child’s medical team before starting treatment. Doctors try to limit these potential side effects as much as possible when planning treatment.

The long-term effects of surgery depend a great deal on the location and extent of the tumor(s). Some operations leave few physical changes other than a scar, while more extensive operations can lead to changes in appearance or in how some parts of the body function, which might require physical rehabilitation afterward.

Some chemotherapy drugs can damage cells in the ovaries or testicles, which might affect a patient’s ability to have children later on. For parents, it’s important to discuss this with your child’s health care team before treatment. In some cases there may be ways to help preserve fertility. For more information, see our documents Fertility and Women With Cancer and Fertility and Men With Cancer.

The long-term side effects of radiation therapy can sometimes be serious, especially for young children. Bones and soft tissues that get radiation might not grow as well. Depending on the area getting radiation, this might cause problems such as curvature of the spine, a shortened arm or leg, limited motion of a joint, hardening of the surrounding soft tissue, or poor development of the facial bones. Other problems linked to radiation can include stiffening of the lungs, cataracts and poor vision in an involved eye, and later problems with sexual function. Young children’s brains are especially sensitive to radiation to the head, which can lead to learning problems or other issues, so doctors do their best to avoid this when possible.

Children who get chemotherapy and/or radiation therapy also have a small, but definitely increased, risk of second cancers later in life. These include bone cancer, leukemia, or other soft tissue tumors. The bone cancers seem to be linked with radiotherapy, while the leukemias are more often seen after treatment with cyclophosphamide and related chemo drugs. These second cancers affect only a small number of RMS survivors, and these are children who most likely would not have survived without these treatments. For more information on second cancers, see our document Second Cancers Caused by Cancer Treatment.

There may be other possible complications from treatment as well. Your child’s doctor should carefully review any possible problems with you before your child starts treatment.

Along with physical side effects, some childhood cancer survivors might have emotional or psychological issues. They might also have problems with normal functioning and school work. These can often be addressed with support and encouragement. If needed, doctors and other members of the health care team can recommend special support programs and services to help children after cancer treatment.

Long-term follow-up care for children and teens

To help increase awareness of late effects and improve follow-up care of childhood cancer survivors throughout their lives, the Children’s Oncology Group (COG) has developed long-term follow-up guidelines for survivors of childhood cancers. These guidelines can help you know what to watch for, what screening tests should be done to look for problems, and how late effects can be treated.

It’s very important to discuss possible long-term complications with your child’s health care team, and to make sure there is a plan in place to watch for these problems and treat them, if needed. To learn more, ask your child’s doctors about the COG survivor guidelines. You can also read them on the COG website: www.survivorshipguidelines.org. The guidelines are written for health care professionals. Patient versions of some of the guidelines are available (as “Health Links”) on the site as well, but we urge you to discuss them with your doctor.

For more about some of the possible long-term effects of treatment, see our document Children Diagnosed With Cancer: Late Effects of Cancer Treatment.

Keeping good medical records

As much as you might want to put the experience behind you once treatment is completed, it is very important to keep good records of your child’s medical care during this time. This can be very helpful later on as your child changes doctors. Gathering these details during and soon after treatment may be easier than trying to get them at some point in the future. Be sure the doctors have the following information (and always keep copies for yourself):

  • A copy of the pathology report(s) from any biopsies or surgeries.
  • Copies of imaging tests (CT or MRI scans, etc.), which can usually be stored digitally (on a DVD, etc.)
  • If there was surgery, a copy of the operative report(s).
  • If your child stayed in the hospital, a copy of the discharge summary the doctor wrote when the child was sent home.
  • If chemotherapy was given, a list of the final doses of each drug your child received.
  • If radiation therapy was given, a summary of the type and dose of radiation and when and where it was given.
  • The names and contact information of the doctors who treated your child’s cancer

It is also very important to keep health insurance coverage. Tests and doctor visits cost a lot, and even though no one wants to think of the tumor coming back, this could happen.

The American Cancer Society medical and editorial content team
Our team is made up of doctors and master's-prepared nurses with deep knowledge of cancer care as well as journalists, editors, and translators with extensive experience in medical writing.

Last Medical Review: November 20, 2014 Last Revised: November 21, 2014

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