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After Treatment TOPICS

Possible late and long-term side effects of treatments for rhabdomyosarcoma

More children 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 may 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 document, Fertility and Women With Cancer or 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 do not grow very well. Depending on the area getting radiation, it may cause problems such as curvature of the spine, a shortened arm or leg, limited motion of a joint, hardening of the surrounding soft tissue, stiffening of the lungs, poor development of the facial bones, cataracts and poor vision of the involved eye, later problems with sexual function, and other problems. 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 cancers 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 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.

Long-term follow-up care for childhood cancer survivors

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 may be treated.

It is 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 download them for free at 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 review them with a 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. Gathering these details soon after treatment may be easier than trying to get them at some point in the future. There are certain pieces of information that your child’s doctors should have, even after your child has become an adult. These include:

  • A copy of the pathology report(s) from any biopsies or surgeries.
  • If there was surgery, a copy of the operative report(s).
  • If your child stayed in the hospital, a copy of the discharge summaries that doctors prepare when patients are sent home.
  • If chemotherapy was given, a list of the final doses of each drug your child received. (Certain chemotherapy drugs have specific long-term side effects. If you can get a list of these from the pediatric oncologist, this might also help any new primary care doctor.)
  • If radiation therapy was given, a summary of the type and dose of radiation and when and where it was given.

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

Last Medical Review: 08/13/2013
Last Revised: 08/13/2013