Norwegian Sarcoma Registry
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Sarcomas represent a group of rare cancers. The survival of sarcoma in Norway is at a good level compared to international results.
Summary from the annual report 2024
In 2024, 566 patients were diagnosed with sarcoma. Sarcoma is cancer in the connective and supportive tissue of the body and can occur in all locations and organs. There are many subdiagnoses with a large difference in aggressiveness and degree of malignancy. Soft tissue sarcomas are reported for 2024 to account for 90% of all sarcomas, with GIST being the largest histological subgroup. The remaining are bone sarcomas.
About a quarter of all patients with sarcoma have had cancer before. One of the risk factors for sarcoma is radiation therapy; from 2022-2024, 2.5% of diagnosed sarcomas were reported as radiation-induced. Genetic predisposition can also increase the risk of multiple cancer cases in the same person.
Radiological examinations are the first step in sarcoma diagnostics. A large number of examinations conducted at radiology institutes or hospitals are reviewed by sarcoma radiologists. Most represent benign conditions that can be monitored or followed up locally. In case of suspected sarcoma, additional imaging investigations are conducted at sarcoma centers, and a biopsy is usually performed under ultrasound or CT guidance. Biopsies with suspected sarcoma must be assessed or reviewed primarily at one of the university hospitals. CT and MRI are important for mapping the extent of the disease and assessing treatment.
Surgery is the main treatment for sarcomas, but in a smaller number of patients, radiation therapy targeting the primary tumor can be given as a curative treatment option. It is desirable to avoid intravenous chemotherapy in patients with extensive cancer disease and a short expected lifespan. For 2022-2024, the proportion of patients receiving chemotherapy in the last phase of life is low in all regions.
Bone tumors are most often discovered during radiological examinations conducted due to pain or injury. In cases of suspected bone sarcoma, patients should be referred to a multi-regional treatment service for surgery for bone sarcoma at Oslo University Hospital or Haukeland University Hospital. The patient should be referred without prior biopsy. For the years 2022-2024, 4.8% were referred to a sarcoma center after surgery/open biopsy, which is well within the target. It is recommended to use PET-CT in the primary investigation of patients with osteosarcoma and Ewing's sarcoma; for 2022-2024, the proportion was 87.7%. The proportion of patients who received postoperative chemotherapy within 3 weeks after surgery is at a moderate target level.
For soft tissue sarcomas in the extremities and trunk, superficial tumors larger than 5 cm, all deep tumors (except lipomas), and otherwise cancer-suspicious tumors should be investigated with MRI and referred for assessment at one of the four sarcoma centers. More than half of the patients are referred to a sarcoma center after evaluation at the hospital. For 2022-2024, 5.6% were referred to a sarcoma center after surgery/open biopsy, which is well within the target. National guidelines recommend MRI for the evaluation of deep soft tissue tumors, for 2022-2024, the proportion was 93.8%.
There were 213 patients with abdominal and retroperitoneal sarcoma in 2024, of which 160 were GIST. In case of suspected abdominal sarcoma, the patient should be referred without prior biopsy or surgery, and patients should not be operated on in places without surgical experience and expertise. The proportion of abdominal and retroperitoneal soft tissue sarcomas that are referred after surgery/open biopsy is 8.6%.
There were 39 patients with gynecological sarcoma in 2024. In cases of clinical or radiological suspicion of gynecological sarcoma, the patient should be referred to a sarcoma center without prior biopsy or surgery. The proportion of patients with gynecological soft tissue sarcomas who were referred after surgery/open biopsy was 6.0% in 2024.