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 the cancer specialists and your family doctor or pediatrician. Follow-up may also include 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 NHL 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 NHL. 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 your child’s 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
  • an enlarged abdomen
  • a painful abdomen
  • fatigue
  • shortness of breath
  • nasal stuffiness
  • headache
  • nausea and vomiting

The chance that childhood NHL will come back 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 1 to 3 months for the first year after treatment
  • every 3 to 6 months (eventually increasing to every 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
  • looking at the abdomen, skin, nervous system, heart and lungs
  • checking the child’s blood pressure and growth
  • looking at the testicles because they can be a site of recurrence

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

  • blood tests to check for thyroid-stimulating hormone (TSH), thyroxine (T4) levels and certain hormone levels, such as follicle-stimulating hormone (FSH), luteinizing hormone (LH), testosterone and estrogen
  • blood chemistry tests to show how well certain organs are working
  • urine (pee) tests
  • imaging tests, such as chest x-rays, CT scans, MRIs, PET scans or PET-CT scans
  • heart function tests, such as an echocardiogram (echo) or electrocardiogram (ECG), for children who have had doxorubicin (Adriamycin)

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.

Expert review and references

  • American Cancer Society. After Childhood Non-Hodgkin Lymphoma Treatment. 2017.
  • American Society of Clinical Oncology. Lymphoma - Non-Hodgkin - Childhood. 2017.
  • Gross TG & Perkins SL . Malignant non-Hodgkin lymphomas in children. Pizzo, P. A. & Poplack, D. G. (Eds.). Principles and Practice of Pediatric Oncology. 6th ed. Philadelphia: Lippincott Williams & Wilkins; 2011: 23:pp. 663-682.
  • Introduction to Long-term Follow-Up after Treatment for Childhood, Adolescent, or Young Adult Cancer. National Childhood Cancer Foundation & Children's Oncology Group. CureSearch. Bethesda, MD: 2006.
  • National Childhood Cancer Foundation & Children's Oncology Group. Long-Term Follow-Up Guidelines Appendix II Patient Education Materials Health Links. Bethesda, MD: 2006.
  • St. Jude Children's Research Hospital. Oncopedia - Non-Hodgkin Lymphomas in Children. Memphis, TN: 2008.

Medical disclaimer

The information that the Canadian Cancer Society provides does not replace your relationship with your doctor. The information is for your general use, so be sure to talk to a qualified healthcare professional before making medical decisions or if you have questions about your health.

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