SUPPORT CANADIANS LIVING WITH CANCER
Follow-up after treatment for childhood HL
Follow-up after treatment is an important part of cancer care. Follow-up for childhood Hodgkin lymphoma (HL) 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.
Some centres have after-care 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 after-care 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 the next scheduled appointment to report any new symptoms and symptoms that don’t go away. Tell the healthcare team if your child has:
- swollen, or enlarged, lymph nodes
- poor appetite
- weight loss
- drenching night sweats
- a general feeling of discomfort or illness (called malaise)
- lack of energy, or lethargy
- itchy skin, or pruritus
The chance of Hodgkin lymphoma recurring is greatest within 3 years, so close follow-up is needed during this time.
Schedule for follow-up visits
Follow-up visits for childhood Hodgkin lymphoma are usually scheduled:
- every 3–4 months for the first few years after treatment
- every 6 months for up to 5 years after treatment
During follow-up visits
During a follow-up visit, the healthcare team usually asks 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
- checking the abdomen, thyroid and skin
Follow-up generally involves a number of 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 its guidelines. Your child may have the following blood and imaging tests during follow-up.
Doctors may order the following blood tests as part of follow-up:
- complete blood count (CBC)
- erythrocyte sedimentation rate (ESR)
- thyroid-stimulating hormone (TSH) and thyroxine (T4) levels
- other hormone levels
The doctor will check TSH and T4 levels if the child received radiation to the chest, head or whole 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 head and neck, chest, abdomen or pelvis can cause development problems during puberty. For example, puberty may start early or it may be delayed. Doctors will often refer children who have received radiation to these areas to an endocrinologist for specialized follow-up. 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:
- chest x-ray
- CT or MRI scan of the area where the cancer started
- gallium or PET scan for children who have a high risk of recurrence
If a recurrence is found during follow-up, the oncology team will assess the child with cancer to determine the best treatment options.
Find out more about these tests and procedures.
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 the healthcare team questions about follow-up.