Families of children with cancer will be offered a consultation with a social worker, psychologist, and/or child psychologist. Network groups and therapy groups are established as needed with the local hospital. School, nursery school, music and play therapy are also important factors during treatment. Parents/guardians have a right to national benefit according to the patient care right §9-11.
After treatment is concluded, the child is monitored for many years (minimum of 5), but often until the child is finished growing into an adult.
During the first years, the goal for follow-up examinations is to find recurrence of the cancer, and also to evaluate consequent effects of the disease and treatment. As time passes, the purpose of follow-up is to look for delayed effects of the disease and treatment.
Children treated for brain tumors are routinely checked with MRI to document control of the disease. These examinations take place either at a neurosurgical department or pediatric outpatient clinic as needed.
Most children treated for cancer grow into healthy adults without severe permanent damage. It is still important to emphasize that permanent injury does occur, partly due to the disease itself and partly due to treatment. Such injuries will often gradually become worse as the child ages, and are most prominent in children treated at very young ages. For older children and adolescents, the risk for delayed injury decreases with increasing age. In Norway, there is no systematic follow-up program for adults treated for cancer during childhood.
The tolerance for radiation treatment in children depends on these factors:
- age of the child
- which organ is irradiated
- size of tissue volume to be irradiated
- dose of radiation given per day (fraction)
- total radiation dose
Knowledge of delayed injuries developed after children began surviving cancer, and many research studies have been performed on delayed injury after cancer treatment. It is known that most injuries are dose-dependent, occurring after a patient has received a well-defined dosage of chemotherapy (cumulative dose) or radiation. However, "safe" dosages do not exist, since there are individual differences in dosages and consequent long-term damage.
Doctors now take into consideration cumulative doses and delayed injuries. We strive to give as small dosages of chemotherapy as possible to treat the disease without costing survival and radiation therapy in children is avoided as much as possible. For cancers that have a good prognosis, there are international studies researching reduction of treatment where possible.
Solid tumors can infiltrate and damage healthy tissue around the tumor, which can cause temporary or permanent damage of organ function. Surgical removal of a tumor with free resection margins is, in most cases, the deciding factor for curing the disease. This means that healthy tissue must also be removed, and, depending on the localization and extent of the tumor, the surgery may cause functional damage. Preoperative chemotherapy promoting tumor shrinkage may facilitate less extensive surgery, thereby preserving organ function.
Children with brain tumors often have neurological symptoms when diagnosed, which either go away or remain after treatment. Children tolerate surgery much better than adults. Children who have undergone radiation and chemotherapy in addition to complicated surgery may develop severe immediate or delayed injuries requiring help and support after treatment. Some of these injuries do not improve.
Chemotherapy causes many acute side effects, which children generally tolerate better than adults, and causes less delayed damage than radiation therapy. Some chemotherapy drugs cause fertility damage (alkylating agents) and others may damage the heart (anthracyclines). Chemotherapy can also increase the risk for developing secondary cancer, even though the increase is small and much less than the risk caused by radiation therapy.
Radiation causes disturbances in growth locally in the irradiated area. Generalized growth may be impaired partly due to lack of growth hormone if the hypophysis is included in the radiation field. In such cases, the child is treated with growth hormone. Production of the other hypophysis hormones may be damaged and the child will need hormone substitution.
Irradiation of the central nervous system also causes learning difficulties and loss of social skills in varying degrees. Delayed injury from radiation therapy may increase with time after treatment.