Norwegian Sarcoma Registry

The Norwegian Sarcoma Registry contains data on sarcomas back to 2018.
Last updated: 8/31/2022

The Norwegian Sarcoma Registry started registration in January 2019, and contains systematically registered data from 2018.

543 patients were diagnosed with sarcoma in 2021. Sarcoma is cancer in connective and supporting tissue in the body and can occur in all locations and organs. Sarcomas are a heterogeneous group of mesenchymal tumors. They represent a main group of rare cancers in Europe, and make up approximately 1 % of all diagnosed cancers. There are many sub-diagnoses with large differences in aggressiveness and degree of malignancy. Soft tissue sarcomas are reported to account for 80-90 % of all sarcomas, with GIST being the largest histological subgroup. The rest are bone sarcomas.

Diagnosis and treatment of sarcoma is centralized at the four university hospitals, University Hospital North-Norway, St. Olav's Hospital, Haukeland University Hospital and Oslo University Hospital. There is a tradition of extensive collaboration across the health regions regarding the diagnosis and treatment of particularly difficult disease cases.

If bone sarcoma is suspected, patients should be referred to the multi-regional treatment service for surgery for bone sarcoma at Oslo University Hospital and Haukeland University Hospital. The patient must be referred without a prior biopsy. Most patients are referred to the sarcoma center after they have been examined at the local hospital, or at another department at the university hospital, and clinicians in Norway mainly follow given guidelines. For soft tissue sarcomas in the extremities and trunk, superficial tumors over 5 cm, all deep and otherwise cancer-suspected tumors must be referred for assessment at one of the four sarcoma centres.

Most of these patients are referred to a sarcoma center after examination at a hospital. Around 9 % of these patients are referred after an open biopsy or surgery of the primary tumor has been carried out without prior agreement with the sarcoma centre.

The diagnosis is based on tissue or cell samples. Histological diagnosis of sarcoma is difficult and requires special expertise. All tissue samples with suspicion of sarcoma must be primary assessed or re-examined at one of the university hospitals. Immunohistochemical and molecular examinations will often be necessary to distinguish different tumor types from each other, and to be able to adapt the treatment for the patients.

Surgery is the main treatment for sarcomas, but in a smaller number of patients radiotherapy against the primary tumor can be given as a curative treatment option. The multi-regional treatment service for surgery for bone sarcoma is responsible for the surgical treatment of bone sarcoma. There is no formal centralization of surgical treatment of soft tissue sarcoma, but there is broad agreement in the professional community in Norway that treatment of soft tissue sarcoma should be centralized to the university hospitals that have established multidisciplinary teams (MDT) for sarcoma. The report shows that few patients with sarcoma receive their final surgical treatment outside a sarcoma centre.

5-year relative survival of sarcoma in Norway is at a good level compared with results reported internationally.

The coverage rate for diagnostic reports from the clinicians was 69.3 % in 2021. The reporting rate for the surgery reports was 66.3 %. None of these achieves a high level of reporting (≥80 %), and there are large differences between the various hospitals (see chap. 5.4.2). The work to establish good routines for reporting from the health service will be important in the future.