Possible long-term side effects of treatments for rhabdomyosarcoma

Because more children with rhabdomyosarcoma (RMS) are surviving longer, it is now possible to look at the long-term effects of their treatment. 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 may result in few physical changes other than a scar, while more involved operations may lead to changes in appearance or in how some parts of the body function, and may require physical rehabilitation.

Some chemotherapy drugs may damage cells in the ovaries or testicles, which can 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.

The long-term side effects of radiation therapy may be significant, especially for young children. Bones and soft tissues that are irradiated do not grow very well. Depending on the area getting radiation, this may result in 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.

Another unwanted long-term result is the small, but definitely increased, risk of second cancers in survivors who had chemotherapy and radiation therapy. 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.

It is important to remember that these second cancers affect only a small number of rhabdomyosarcoma survivors, and these are children who most likely would not have survived without these treatments.

Long-term follow-up care for children

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 CureSearch Web site: www.survivorshipguidelines.org. The guidelines are written for health care professionals. Patient versions of some of the guidelines 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 chemotherapy drug or other 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.