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Childhood cancer

In 2022, there were 210 new cases of childhood cancer in Norway. Long-term survival after treatment for cancer in children and adolescents is very good.

Cancer in children and adolescents is rare and consists of many individual diagnoses where the incidence is often only a few cases per year. It is therefore a challenge for professionals to maintain specialist expertise for each and every type of cancer. On this basis, the then Ministry of Health and Social Affairs established in 1999 the Competence Centre for Solid Tumours in Children (now the National Advisory Unit on Solid Tumours in Children; KSSB).

The purpose was to increase national competence regarding diagnostics, treatment, follow-up and late effects of childhood cancer treatment. 

Cancer in children is classified into twelve main groups/diagnostic groups based on the International Classification of Childhood Cancer: leukaemias (blood cancer), lymphomas (lymphoma) and tumors of the central nervous system (CNS) as well as a further nine groups of other solid tumors, including neuroblastoma, sarcoma, liver and kidney tumors.

Risk factors

The causes of childhood cancer are unknown. Some hereditary diseases increase the risk of cancer in children. It is also speculated that environmental factors, electromagnetic radiation or infections may have an impact. So far, this has not been documented.

Source: helsenorge.no

Read more about childhood cancer at helsenorge.no

New cases

210 children and adolescents under the age of 18 were diagnosed with cancer in Norway in 2022. The number of cases per 100,000 is 18.8.

Aging

The incidence of cancer in children and adolescents has been stable for the past 35 years. Internationally, a slight increase in incidence has been found for the age group 0-14 years.

Prevalence of cancer in children and adolescents by age at diagnosis, 1972-2022. From Fig. 3.2 in the Annual Report of the National Quality Registry for Childhood Cancer 2022 (Norwegain only)

Overall, the prevalence is highest in the age group 0-4 years and 13-17 years. This is explained by the fact that leukaemia is most common in the age group 1-5 years, and that solid tumours outside the central nervous system have the highest incidence in the age group 0-5 years and 12-17 years.

Children with solid tumors aged 0-5 years most often get embryonic tumors, i.e. tumors that arise from a type of tissue we only have in fetal life. Examples are neuroblastoma, retinoblastoma (eye), hepatoblastoma (liver) and Wilms tumor / nephroblastoma (kidney). These tumors are often diagnosed shortly after birth or in the first years of life. Adolescents aged 12-17 years more often get lymphoma, bone tumors and germ cell tumors (for exampletesticular cancer).

Survival

The prognosis for cancer in children is generally better than in adults. Nevertheless, cancer in children is the most frequent cause of death from disease in children and adolescents over one year of age in Norway.

Five-year relative survival from childhood cancer is high (88.9 per cent).

Overall survival for all diagnoses in the youngest children (0-5 years) is 89 per cent. For slightly older children (6-11 years) the survival rate is 87.2 per cent, while for the oldest (12-17 years) the survival rate is 90 per cent.

Bone tumors (mainly sarcoma of bones), soft tissue sarcomas and some subtypes of CNS tumors remain very challenging cancers to treat, with survival rates below 80 percent. In Ewing's sarcoma and osteosarcoma (malignant bone tumours), work is underway to develop new treatment studies through a European collaboration, but the process has been delayed for various reasons. CNS tumors are a very heterogeneous group, where a few very aggressive tumor types pull overall survival down. 

For most diagnoses, there is no prognostic difference between the age groups. The exceptions are soft tissue sarcomas and CNS tumors (best prognosis in adolescents), and bone tumors and leukemia (best prognosis in the youngest children). The most important reason may be age-dependent differences in biological aggressiveness and opportunity to receive treatment. However, the figures are small, and the differences must not be overinterpreted.

The figure shows five-year survival for children and adolescents by region of residence, 2013-2022. From Fig. 3.10 in  the Annual Report of the National Quality Registry for Childhood Cancer 2022 (Norwegian only)

The figure shows five-year survival in regions South-East, West, Central Norway and North. All regions are close to the national average of 88.9%.

In last year's report, we commented on possible regional differences in survival and that we would look into this more closely ahead of this year's report. After clearing up the data, we now see that the results are consistent between the regions, and we conclude that there is no evidence of regional differences, and that survival is the same regardless of place of residence/region of treatment. This is fully in line with the main objective of the professional community, and shows that it is possible to maintain specialist expertise regardless of the size of the hospital.

Survivors of childhood cancer

The number of survivors of cancer such as children or adolescents in Norway is steadily increasing. Most patients who survive for five years will be permanent
Healed. Previous estimates predicted that the number of childhood cancer survivors would reach 5,000 around the year 2020. Results from the Childhood Cancer Registry show that this figure was reached already in 2016 and the number of survivors is 6,912 in 2022.

In 2022, there are nearly 7,000 people alive in Norway after a cancer dia- gnose in childhood. This is a direct consequence of improved cancer treatment and care. At the same time, we should not forget that many of these individuals live with various late effects as a direct consequence of the disease and its treatment, of both a medical and socioeconomic nature. In particular, we see serious late effects after multimodal treatment of brain tumours at a young age.

The figures are important, as they indicate that the number of long-term survivors in society is increasing, many of them with late effects after treatment. This may be considered a "luxury problem" but will require increased resources from the health service in the years to come due to treatment-related health problems of varying severity.

Number of deaths

27 children and adolescents (0-19 years)* in Norway died of cancer in 2021.

Development over time

Prevalence of cancer in children and adolescents in Norway, 1972-2022. From Fig. 3.1 in  the Annual Report of the National Quality Registry for Childhood Cancer 2022 (Norwegian only)

Overall, a slightly increasing tendency is seen in the prevalence. The overall incidence increased somewhat from the 1970s to around the year 2000, without taking population growth into account, and is then stable. This is in line with the prevalence of comparable European countries.

While the incidence of childhood cancer has been stable since the 1990s, there has been an increase in survival among children and adolescents with cancer from 1959 to the present.

Five-year survival for children and adolescents in different time periods, distributed by diagnostic groups, 1962-2021. From Fig. 3.8 in the Annual Report of the National Quality Registry for Childhood Cancer 2022 (Norwegian only).

The curve for leukaemia shows that survival is approaching 90 per cent, while around 1960 it was close to zero. Lymphoma has the best prognosis today, but could also be cured in 4 out of 10 cases in 1960. This is because effective radiation therapy was already available at that time, especially for Hodgkin's lymphoma. Unfortunately, this has led to significant long-term adverse effects, often in the form of heart disease or one or more new cancerous tumours in adulthood. Advances in chemotherapy have since led to less use of radiotherapy today, especially for Hodgkin lymphoma, but also for other diagnoses such as prophylactic CNS irradiation in acute lymphoblastic leukemia.

Both leukaemias and lymphomas have shown persistently increased long-term survival after 2000, while survival for CNS tumours and solid non-CNS tumours has shown less progress over the past ten years. The hope is that immunotherapy, as well as regimens with targeted drugs that work against very special gene changes in the cancer cells and thus intervene in the cells' signaling pathways, can improve survival where conventional methods are not possible.

National Quality Registry for Childhood Cancer

KSSB (Competence Centre for Solid Tumours in Children, now National Advisory Unit on Solid Tumours in Children). In 2001, the Cancer Registry of Norway and the specialist communities in the field of childhood cancer decided that the Norwegian part of the Nordic Childhood Cancer Registry should be established as the Norwegian Clinical Register for Solid Tumours in Children. 

In 2006, the Norwegian Clinical Registry for Solid Tumours in Children was expanded to the National Quality Registry for Paediatric Cancer (Childhood Cancer Registry) by including leukaemias. The register was granted national status in 2013.

The registry shall contribute to strengthening the quality of the health care provided to children with cancer. This includes the effect of the treatment, improved survival, but also late effects that affect quality of life in the long term. The registry shall operate, promote and provide a basis for new knowledge about the causes, diagnoses and course of cancer diseases.

In order to fulfil its purpose, the quality register contains detailed information on the prevalence, assessment and treatment of patients, as well as survival.

Read more about the Norwegian Quality Registry for Childhood Cancer

The National Action Programme on Paediatric Cancer refers largely to research and treatment protocols for the treatment of children with cancer. Such protocols ensure that children receive equal treatment according to internationally accepted guidelines, and thus ensure equally good survival regardless of where in the country the patients are treated.

Barn and youth evaluated in multidisciplinary team meeting (MDT) prior to treatment, 2021-2022. From Fig. 3.4 in the Annual Report of the Childhood Cancer Registry 2022. (Norwegain only)

Multidisciplinary team meetings (MDT) are intended to ensure correct diagnosis, stratification, inclusion in the correct treatment protocol and how planned follow-up should be performed, as well as evaluation of treatment response along the way.

By MDT meeting is meant that the individual patient is discussed specifically across medical specialties. For solid tumours, this could be, for example, a paediatric oncologist, pathologist and radiologist. The discussion may also be between colleagues with the same specialty, for example for leukaemia this may be an internal discussion among doctors or with molecular geneticists. Irrespective of the form of the discussion, a separate note is made in the electronic patient records.

As the figure shows, the achievement of goals has been set at 80 per cent of patients to have been assessed by a multidisciplinary team. The target was reached at 90.7 per cent in 2022, and the result is the best we can show so far for the MDT indicator.

Download annual reports for the Childhood Cancer Registry of Norway (Norwegain only)

Interventions for suspected childhood cancer

If cancer is suspected, the child should be thoroughly examined by a doctor. Blood samples are taken and the use of diagnostic imaging depends on the location and symptoms of the tumour.

Tissue samples from tumors, lymph nodes or bone marrow to exclude cancer should be taken at the paediatric oncology department or one of the other associated specialties. This should only be done in exceptional cases elsewhere, and then only by agreement with the paediatric oncology department or other specialist departments.

It may be wise for parents and children to prepare for the meeting with the doctor. Here are some helpful tips:

  • Think about what you want to get out of the conversation
  • Write down in advance what you are wondering about
  • Summarize what you have talked about before you leave the doctor, then any misunderstandings can be corrected
  • Feel free to talk to someone about the conversation afterwards

Source: helsenorge.no

Questions about cancer

The Cancer Registry of Norway is a research institution. Our professionals therefore do not answer questions about diagnosis, assessment, treatment and follow-up from patients or their relatives.

Questions about this should be directed to your own GP, treating institution or the Cancer Society Advisory Service tel: 21 49 49 21

Useful Links

About childhood cancer in helsenorge.no

Children's Cancer Society

National action programme with guidelines for diagnosis, treatment and follow-up of cancer in children

Childhood Cancers on National Cancer Institute website