After Rhabdomyosarcoma Treatment
During treatment for rhabdomyosarcoma (RMS), most patients and their families are focused on getting through treatment and beating the cancer. After treatment, the focus shifts to long-term effects of RMS and its treatment, as well as worries about the cancer coming back.
It is normal to want to put RMS and its treatment behind you and to get back to a life that does not revolve around cancer. But getting the right follow-up care offers you or your child the best chance for recovery and long-term survival.
Follow-up exams and tests
For several years after treatment, it is important to have regular follow-up exams with the cancer care team. The doctors will watch for signs of cancer and side effects of treatment. Doctor visits will be more frequent at first, but the time between visits may get longer as time goes on.
Checkups after treatment of RMS include careful physical exams, lab tests, and sometimes imaging tests such as computed tomography (CT), magnetic resonance imaging (MRI), or positron emission tomography (PET) scans. If the RMS comes back (recurs), it is usually within the first few years after treatment. If the tumor comes back, or if it does not respond to treatment, your doctors will discuss with you the various treatment options available.
As time goes by, the risk of recurrence goes down. However, routine doctor visits are still important because some side effects of treatment might not show up until years later (see below). A benefit of follow-up care is that it gives you a chance to discuss any questions or concerns that arise during and after recovery from cancer treatment.
Ask the cancer care team for a survivorship care plan
Talk with the treatment team about developing a survivorship care plan. This plan might include:
- A summary of the diagnosis, tests done, and treatment given
- A suggested schedule for follow-up exams and tests
- A schedule for other tests that might be needed in the future, such as early detection (screening) tests for other types of cancer, or tests to look for long-term health effects from RMS or its treatment
- A list of possible late or long-term side effects from treatment, including what to watch for and when to contact the doctor
Keeping records of health insurance and medical care
As much as you might want to put the experience behind you once treatment is completed, it is important to keep good records of your (child’s) medical care during this time. Eventually, your child will grow up, be on their own, and have new doctors. Gathering these details soon after treatment may be easier than trying to get them at some point in the future.
Ask the cancer care team where and how to get this information. Learn more in Keeping Copies of Important Medical Records.
It is also important to keep health insurance coverage. Tests and doctor visits can cost a lot, and even though no one wants to think of cancer coming back, this could happen.
Late and long-term effects of treatment
Treatment for RMS might affect a person’s health later in life. Young people are especially at risk for possible late effects of their treatment. This risk depends on many factors, such as the size and location of the cancer, the treatments received, doses of cancer treatment, and the person’s age when they were treated.
Physical health after cancer treatment
Treatment for RMS might affect a person’s health later in life. Young people are especially at risk for possible late effects of their treatment. This risk depends on many factors, such as the size and location of the cancer, the treatments received, doses of cancer treatment, and the person’s age when they were treated.
Because of major advances in treatment, many people treated for RMS are now surviving longer.
RMS survivors may be at risk for several possible late effects from their treatment. It is important to discuss what these possible effects might be with your child’s medical team.
People who have been treated for RMS may be at higher risk of developing other cancers later in life depending on their treatment.
After getting certain chemotherapy drugs, such as alkylating agents (cyclophosphamide), people are at an increased risk of developing leukemia from chemotherapy, most commonly acute myeloid leukemia (AML). This is rare, but can occur.
Children exposed to radiation may have an increased risk of other cancers later in life. For example, children exposed to thyroid radiation may have a higher risk of thyroid cancer, female RMS survivors exposed to chest radiation have a higher risk for breast cancer earlier in life, and RMS survivors treated with radiation to the abdomen (belly) have an increased risk for colon cancer. In people with higher risk of colon and breast cancer due to treatment, early cancer screening is recommended.
Alkylating chemo drugs (cyclophosphamide) or radiation or surgery in the pelvic area may also affect sexual development and the ability to have children later in life. Talk to your cancer care team about the risks of infertility with treatment and ask if there are options for preserving fertility. Fertility preservation may be an option even after cancer treatment is completed in some cases. For more information, see Preserving Fertility in Children and Teens With Cancer.
The long-term side effects of radiation therapy can sometimes be serious, especially for young children. Parts of the body that get radiation might not grow as well. Depending on the area getting radiation, this might cause problems such as curving of the spine, a shortened arm or leg, limited motion of a joint, scarring of soft tissue, or poor development of the facial bones.
Surgery can also impact growth and development, depending on the location and extent of the cancer. Some operations leave just 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 therapy.
Some people can develop neuropathy, or damage to the nerves that control how our body moves and feels, after treatment with drugs like vincristine. Symptoms of neuropathy, like numbness, tingling or tripping while walking, often go away or get better once treatment is done. For some people, these symptoms may be lifelong.
Long-term follow-up guidelines
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 are used by your doctor to create a Survivorship Care Plan specific to your (child’s) treatment. They 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.
To learn more, ask your child’s doctors about the COG survivor guidelines. You can also download them for free at the COG website: . The guidelines are written for health care professionals, but patient education on some late effects of treatment is available (as “Health Links”) on the site as well.
For more on the possible long-term effects of treatment, see Late and Long-term Effects of Childhood Cancer Treatment.
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- References
Developed by the 榴莲视频 medical and editorial content team with medical review and contribution by the American Society of Clinical Oncology (ASCO).
Children’s Oncology Group. Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent and Young Adult Cancers, Version 6.0. Monrovia, CA: Children’s Oncology Group; 2023. Available on-line: www.survivorshipguidelines.org.
Linardic CM, Wexler, LH. Chapter 25: Rhabdomyosarcoma. In: Blaney SM, Adamson PC, Helman LJ, eds. Pizzo and Poplack’s Principles and Practice of Pediatric Oncology. 8th ed. Philadelphia Pa: Lippincott Williams & Wilkins; 2021.
National Cancer Institute. Childhood Rhabdomyosarcoma Treatment (PDQ?). 2024. Accessed at www.cancer.gov/types/soft-tissue-sarcoma/hp/rhabdomyosarcoma-treatment-pdq on April 3, 2025.
Last Revised: June 2, 2025
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