SUPPORT CANADIANS LIVING WITH CANCER
Follow-up after treatment for childhood non-Hodgkin lymphoma
Follow-up after treatment is an important part of cancer care. Follow-up for childhood non-Hodgkin lymphoma (NHL) 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 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 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 (enlarged) lymph nodes
- enlarged abdomen
- painful abdomen
- shortness of breath
- nasal stuffiness
- nausea and vomiting
The chance of childhood NHL recurring is greatest within the first 3 years after treatment, so close follow-up is needed during this time.
Schedule for follow-up visits
Follow-up visits for childhood NHL are usually scheduled:
- every 3 months for the first year after treatment
- every 6–12 months over the next few years
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
- examining the abdomen and skin
- examining the nervous system
- examining the heart and lungs
- checking blood pressure and growth of the child
- examining the testicles as they can be a site of recurrence
Follow-up generally involves a number of tests to make sure the cancer hasn’t come back, or recurred, and to check for the late effects of cancer treatment. Children who are part of a clinical trial will be followed according to the guidelines in the protocol.
If a recurrence is found during follow-up, the oncology team will assess the child to determine the best treatment options.
Your child may have the following blood, imaging and other tests during follow-up.
Doctors may order the following blood tests as part of follow-up:
- complete blood count (CBC)
- blood chemistry tests (electrolytes, liver enzymes, kidney tests)
- thyroid-stimulating hormone (TSH) and thyroxine (T4) levels
- hormone levels
- urine tests
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, such as puberty starting early or later than normal. 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
- PET scan or PET-CT scan for children who have a high risk of recurrence
Doctors may order tests to check the heart, such as echocardiogramechocardiogramA procedure that uses ultrasound to look at the structure and motion of the heart.. Echocardiogram should be done every 2–4 years depending on the total lifetime dose of certain types of chemotherapy such as doxorubicin (Adriamycin) and daunorubicin (daunomycin, Cerubidine).
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.
Now I know that I will help someone with cancer even after I’m gone. It’s a footprint I want to leave behind me.
Establishing a national caregivers strategy
The Canadian Cancer Society is actively lobbying the federal government to establish a national caregivers strategy to ensure there is more financial support for this important group of people.