Follow-up after treatment for neuroblastoma

Follow-up after treatment is an important part of cancer care. Follow-up for neuroblastoma is often shared among doctors and healthcare professionals, including audiologists, speech-language pathologists, 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.

Follow-up is important because there is a chance the cancer can come back (recur) and late side effects from treatment can develop. Initial follow-up focuses on checking to see if neuroblastoma 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 neuroblastoma. People who have a childhood cancer may be 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. These clinics help prepare survivors who are reaching early adulthood to successfully manage their own healthcare.

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

• any lump, growth or swelling
• difficulty breathing or swallowing
• nausea and vomiting
• loss of appetite
• weight loss
• pain
• limping or weakness in legs

The chance of neuroblastoma recurring is greatest within 2 years, so close follow-up is needed during this time. As more time passes after the end of treatment, there is less and less risk that the cancer will recur. It is rare for relapses to occur more than 5 years after treatment.

Follow-up visits for neuroblastoma are usually scheduled:

• every 2 to 6 months for the first few years after treatment
• less often over the next several years

During a follow-up visit, the healthcare team will usually ask questions about the side effects of treatment and how the child is coping. The doctor may do a complete physical exam, including:

• feeling the lymph nodes
• examining the abdomen and skin
• checking for signs that the cancer has recurred
• looking for any long-term effects of treatment on the child’s growth, development and organ function

Follow-up generally involves tests to rule out recurrence and check for the late effects of cancer treatment. A child who is part of a clinical trial will be followed according to the guidelines in the protocol. Your child may have the following blood and imaging tests during follow-up. If a recurrence is found during follow-up, the oncology team will assess the child to determine the best treatment options.

Neurblastoma cells produce chemical substances called catecholamines. These are broken down into homovanillic acid (HVA) and vanillylmandelic acid (VMA). Doctors may order urine tests to check levels of HVA and VMA.

Doctors may order a complete blood count (CBC) and blood chemistry tests. These tests are done to check the child's general health and to see how well certain organs, such as the liver and kidneys, are working.        

The doctor will check thyroid-stimulating hormone (TSH) and thyroxine (T4) levels if the child received radiation to the chest or total body. Radiation to these areas can affect the thyroid. If TSH or T4 levels are low, the child may need thyroid hormone replacement every day to regulate the thyroid gland.

Radiation to the neck, chest, abdomen or pelvis can cause development problems during puberty, such as puberty starting early or being delayed. Doctors will often refer children who have received radiation to these areas to an endocrinologist for specialized follow-up. An endocrinologist is a doctor who specializes in treating hormone problems. Boys are tested for follicle-stimulating hormone (FSH), luteinizing hormone (LH) and testosterone. Girls are tested for FSH, LH and estrogen.

Doctors may order the following imaging tests as part of follow-up:

• a chest x-ray
• a CT or MRI scan of the area where the cancer started
• an MIBG scan to find out if the tumour has recurred and check if it has spread to other parts of the body
• a PET scan as follow-up if MIBG scans didn’t find neuroblastoma when it was first diagnosed

Doctors may order tests to check the heart and lungs, such as echocardiogram, electrocardiogram (ECG) and pulmonary function tests. Hearing tests may be done, if needed.

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 the healthcare team questions about follow-up.