Follow-up after treatment for rhabdomyosarcoma

Follow-up after treatment is an important part of cancer care. Follow-up for rhabdomyosarcoma is often shared among doctors and healthcare professionals, including audiologists, dentists, eye doctors, nurses and psychologists. Your child’s healthcare team will work with you to decide on follow-up care to meet your child’s needs.

Some centres have aftercare clinics that specialize in follow-up for survivors of childhood cancer. Long-term follow-up is important for children because there is a chance that cancer can come back, or recur, and late side effects from treatment can develop. People who have a childhood cancer are often followed in aftercare programs for life. The Children’s Oncology Group (COG) provides long-term follow-up guidelines for childhood cancer survivors.

Some centres across Canada have transition clinics set up to follow the survivors of childhood cancer. Transition clinics help to prepare the survivor who is reaching early adulthood to successfully transition to the world of adult healthcare.

Don’t wait until your child’s next scheduled appointment to report any new symptoms and symptoms that don’t go away. Tell the healthcare team if your child has:

  • a swelling or lump
  • pain or soreness
  • limping or other difficulty using the legs, feet, arms or hands
  • difficulty breathing

The chance of rhabdomyosarcoma recurring is greatest within 3 years, so close follow-up is needed during this time.

Schedule for follow-up visits

Follow-up visits for rhabdomyosarcoma are usually scheduled:

  • every 3 months for the first year
  • every 6 months for the second and third years
  • yearly after that

During follow-up visits

During a follow-up visit, your healthcare team will usually ask questions about the side effects of treatment and how your child is coping. They will also check for signs that your child is growing and developing normally.

The doctor may do a physical exam, including:

  • examining the area where the primary tumour was removed
  • listening to the lungs
  • examining the abdomen
  • feeling the lymph nodes

Tests are often part of follow-up care. Your child may have:

  • blood tests to check organ function
  • measurements of growth
  • CT scan or MRI of the area where the tumour started
  • chest x-ray or CT scan
  • echocardiogram to check heart function

If a recurrence or other problems are found, the healthcare team will assess your child to determine the best treatment options. Some children may be referred to an endocrinologist if there are any problems with their sexual development.

Questions to ask about follow-up

Find out more about the Children’s Oncology Group long-term follow-up guidelines. To make the decisions that are right for your child, ask your healthcare team questions about follow-up.

Expert review and references

  • American Society of Clinical Oncology. Rhabdomyosarcoma - childhood. 2014:
  • Cripe TP. Pediatric Rhabdomyosarcoma. WebMD LLC; 2014:
  • Hendershot, E . Rhabdomyosarcoma. Tomlinson, D. & Kline, N. E. (Eds.). Pediatric Oncology Nursing: Advanced Clinical Handbook. Germany: Springer; 2005: 2.9: pp.66-70.
  • National Childhood Cancer Foundation & Children's Oncology Group. Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers. Bethesda, MD: 2013.