This information represents the views of the doctors and nurses serving on the American Cancer Society’s Cancer Information Database Editorial Board. These views are based on their interpretation of studies published in medical journals, as well as their own professional experience.
The treatment information in this document is not official policy of the Society and is not intended as medical advice to replace the expertise and judgment of your cancer care team. It is intended to help you and your family make informed decisions, together with your doctor.
Your doctor may have reasons for suggesting a treatment plan different from these general treatment options. Don’t hesitate to ask him or her questions about your treatment options.
General approach to treatment
Once rhabdomyosarcoma has been found and staged, the cancer care team will talk with you about treatment options. It’s important to be sure you understand your child’s options as well as their possible side effects to help make the decision that’s the best fit for your child. If there is anything you don’t understand, ask to have it explained. You can find some good questions to ask in What Should You Ask the Doctor About Rhabdomyosarcoma?
The treatment and prognosis (outlook) for patients with RMS depend to a large extent on the type of RMS and on how much of it can be removed with surgery. This is why it’s very important for patients to be diagnosed and treated by doctors who have experience with RMS. Children with RMS are best treated in a cancer center where there is experience and expertise in treating childhood cancers, such as in centers who are members of the Children’s Oncology Group.
For children and teens, a team approach is recommended that includes specialists at a children’s cancer, as well as the child’s pediatrician. For adults with RMS, the treatment team typically includes specialists at a major cancer center, as well as the patient’s primary care doctor. Doctors on the treatment team might include:
- An orthopedic surgeon (a surgeon who specializes in muscles and bones) who is experienced in treating RMS
- A medical or pediatric oncologist (a doctor who treats cancer with chemotherapy and other drugs)
- A radiation oncologist (a doctor who treats cancer with radiation therapy)
- A pathologist (a doctor specializing in using lab tests to diagnose and classify diseases)
- A physiatrist (a doctor who directs a person’s rehabilitation and physical therapy after treatment)
The team might also include other doctors, as well as physician assistants (PAs), nurse practitioners (NPs), nurses, psychologists, social workers, physical therapists and other rehabilitation specialists, and other health professionals. Going through cancer treatment often means meeting lots of specialists and learning about parts of the medical system you probably haven’t been exposed to before. For more information, see our document Children Diagnosed With Cancer: Understanding the Health Care System.
Before treatment, the doctors and other members of the team will help you understand the tests that will need to be done. The team’s social worker will also counsel you about the problems you and your child might have during and after treatments such as surgery, and might be able to help you find housing and financial aid if needed.
The types of treatment that can be used for RMS include:
- Radiation therapy
- High-dose chemotherapy and stem cell transplant (very rarely)
All children and adults with RMS will be treated with surgery to remove the tumor if it can be done without causing major damage or disfigurement. If this isn’t possible, chemotherapy and/or radiation therapy may be used first to try to shrink the tumor. If it shrinks enough, surgery can be done at this point. The goal of surgery is to remove the tumor completely, but this isn’t always possible.
Whether the tumor appears to have been removed completely or not, all patients with RMS need chemotherapy. Without it, it’s very likely that the cancer will come back in distant parts in the body because small amounts of cancer have almost always reached other parts of the body when the cancer is first found.
If cancer is left behind after surgery or if the cancer has some less favorable traits and it hasn’t spread to distant sites (as is the case most of the time), radiation therapy will also be given.
Many of these treatments can be used again if the cancer continues to grow or if it comes back later on.
All of these treatments can have side effects, but many of them can be made less troublesome. Your medical team will help you take care of the side effects and help you understand and deal with the medical problems, stress, and other issues related to treatment.
Because many of these things can be more complex for cancer in children, many people will be involved in your child’s overall care. As a parent, taking care of a child with cancer can be a very big job. It’s important to remember that you will have a lot of help. It’s also important for you to know that the health care professionals who treat children with RMS are using the experience and knowledge gained from many decades of detailed scientific study of treating this disease.