Follow-up after treatment for rhabdomyosarcoma

Last medical review:

Follow-up after treatment is an important part of cancer care. Follow-up for rhabdomyosarcoma (RMS) is often shared among the cancer specialists (oncologists, surgeon and radiation oncologist) and your child's family doctor or pediatrician. The healthcare team will work with you to decide on follow-up care to meet your child's needs.

Follow-up is important because there is a chance the cancer will come back (recur) and late side effects from treatment can develop. Initial follow-up focuses on checking to see if RMS has come back and making sure that the child has recovered from treatment. In the long term, follow-up looks for late effects of treatment for RMS. People who have a childhood cancer may be followed in aftercare programs for life. The Children's Oncology Group provides long-term follow-up guidelines for childhood cancer survivors. Some centres across Canada have special clinics set up to follow the survivors of childhood cancer. These clinics help prepare survivors who are reaching early adulthood to successfully manage their own 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 right away if your child has:

  • any new lump or swelling
  • pain or an increase in pain
  • limping or other problems using the legs, feet, arms or hands
  • breathing problems

The chance that RMS will come back is greatest within 3 years, so your child will need close follow-up during this time.

Schedule for follow-up visits

Follow-up visits for RMS are usually scheduled:

  • every 3 months for the first year
  • every 4 to 6 months for the second and third years
  • every 6 months for the fourth and fifth 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 may also check for signs that your child is growing and developing normally.

The doctor may do a physical exam, including:

  • looking at the area where the tumour was removed
  • listening to the lungs
  • looking at the abdomen
  • feeling the lymph nodes

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

  • blood tests to see how well the organs are working
  • tests to measure growth
  • CT scan or MRI of the area where the tumour started
  • chest x-ray or CT scan of the chest to see if cancer has spread there
  • echocardiogram (an ultrasound that checks to see how well the heart is working

If the cancer has come back, you and the healthcare team will discuss a plan for your child's treatment and care.

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

  • Paul Nathan, MD, MSc, FRCPC
  • Normand Laperriere, MD, FRCPC