Follow-up after treatment for childhood bone cancer

Follow-up care lets the healthcare team keep track of your childʼs health for a period of time after treatment ends. This care is often shared among the cancer specialists and your child’s family doctor. They will help your child recover from treatment side effects and watch your child for any signs that the cancer has come back (recurred).

Follow-up care may not seem that important, especially if treatment was long or very hard. Follow-up care may seem stressful because it is a reminder of cancer and treatment, or because you are worried about what a test may reveal. But follow-up care is an important part of cancer care. Talk to your childʼs healthcare team about follow-up and why it matters. The healthcare team is there to help.

Don’t wait until the next scheduled appointment to report any new symptoms and symptoms that donʼt go away. Tell the healthcare team about:

• pain or an increase in pain
• any new lumps or swelling

The chance that osteosarcoma will come back (recur) is greatest within 18 months after completing treatment. The chance that Ewing sarcoma will come back is greatest within 2 years after completing treatment. Close follow-up is usually done for the first 5 years after completing treatment.

Follow-up visits for childhood bone cancer are usually scheduled:

• every 3 months for 2 years
• then after that, every 6 months for 3 years
• then after that, every year for 5 years
• then after that, every 2 to 3 years

Children who have limb-sparing surgery need careful orthopedic follow-up. They will also need to see a rehabilitation medicine specialist, physiotherapist and occupational therapist.

Children who have limb-sparing surgery or amputation often need lifelong follow-up with an orthopedic surgeon.

During a follow-up visit, your child’s healthcare team will usually ask questions about the side effects of treatment and how your child and family are coping. They may also ask about how your child is developing and if there are any signs that bone cancer has come back.

Your child’s doctor may do a physical exam, including:

• feeling the lymph nodes
• examining the area where the primary tumour was
• checking that your child is growing normally
• checking that your childʼs sexual development is normal

Tests are often part of follow-up care and may include:

• blood tests to check organ function
• a bone scan
• a CT scan or MRI of the primary tumour site
• an x-ray or a CT scan of the chest
• an echocardiogram to check heart function

Children who have limb-sparing surgery need to have yearly x-rays to check:

• if the limbs are of different lengths

• if bone grafts or implants are healing properly or not
• if grafts have broken or gotten fractured
• if implants are loose

If the cancer has come back, the healthcare team will discuss a plan for treatment and care.

Find out more about the Children’s Oncology Group long-term follow-up guidelines.

The following are questions that you can ask the healthcare team about follow-up after treatment. Choose the questions that fit your child’s situation and add questions of your own. You may find it helpful to take a list of questions to the next appointment and write down the answers.

• What is the schedule for follow-up visits?
• How often is follow-up scheduled with the cancer specialist?
• Who is responsible for follow-up visits?
• What will happen at a follow-up visit?
• Which tests are done on a regular basis? How often are they done?
• Are there any symptoms that should be reported right away? Who do I call?
• Who can help my child cope with the long-term side effects of treatment?