Norwegian Pancreatic Cancer Registry
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The majority of patients with pancreatic cancer can not undergo surgery either because of metastasis, locally advanced disease or high age. The risk of developing pancreatic cancer increases with age.
Summary from the annual report 2024
From 1990 until 2024, there has been a stable occurrence of pancreatic cancer in Norway for both genders. 1034 patients were diagnosed with pancreatic cancer in 2024. Of these, 94 were identified with neuroendocrine neoplasms and are not included in the registry. The annual report includes patients with pancreatic adenocarcinoma.
Investigation of pancreatic cancer is done locally, and surgery for pancreatic cancer is centralized to Oslo University Hospital, Stavanger University Hospital, Haukeland University Hospital, St. Olavs Hospital, and UNN Tromsø. The figure showing the percentage of operated cases is distributed by intake area, and the numbers for many of the health enterprises are too small for the variations to be given much weight. The report shows that 24% of all patients operated for pancreatic cancer between 2022 - 2024 received preoperative chemotherapy.
The risk of developing pancreatic cancer increases with age. Pancreatic cancer often presents with few and vague symptoms, which can lead to late detection of the disease. The majority of patients with pancreatic cancer cannot undergo surgery either due to distant metastases, locally advanced disease, or due to old age and comorbidities that are not compatible with surgical treatment. Of the 1,133 patients diagnosed during the period of 2023 to June 2024, who were not operated on, 44% received palliative chemotherapy. The proportion receiving palliative chemotherapy varies somewhat between the intake areas. Among all patients diagnosed with pancreatic cancer, 47% did not receive any tumor-directed treatment, underscoring that the disease burden is high for many already at the time of diagnosis.
In this year's report, there are several analyses that include data from the KPR (municipal patient and user register). Since last year's report, a thorough quality assurance process has been carried out, and it shows that the completeness of both registers is high (see chap. 4.3.2). Figure 2.6 shows a mapping of the number of general practitioner visits patients have had in the last 6 months before they are diagnosed with pancreatic cancer, and figures 2.19 and 2.20 show a mapping of the use of municipal health services after surgery.
Similar to last year, we have included detailed data on preoperative weight loss and survival. These data are sourced from NORGAST (Norwegian registry for gastric surgery) and are the result of a collaboration established between NORGAST and Cancer.
In 2024, a new internal registration form for pathology was put into production. This allows us to gather more and more detailed information obtained from pathology reports. This year's report therefore presents two new figures that map the number of lymph nodes examined and the number of targets performed by primary tumor.
Furthermore, an analysis has been conducted which shows that the proportion of patients who received chemotherapy less than 4 weeks before death is 12% nationally. This is a figure that is desired to be kept low, and is now defined as a quality indicator in the quality registry. This year, as in last year, we have included detailed data on medicinal cancer treatment. Such data is included in several analyses and provides information on the type of chemotherapy given and at what time. The report shows overall survival at 1 and 5 years after diagnosis for all pancreatic cancer patients, as well as a figure showing 1-, 3-, and 5-year survival for operated pancreatic cancer patients.
In 2021, a study report for pancreatic cancer was put into production. This is a concise and informative form, and an important measure to gain more knowledge about the investigations patients undergo, as well as to help ensure a high coverage rate in the Cancer Registry. The information from this will be linked with pathology information and treatment information from professional systems. The coverage rate is at a moderate level (65.3%). The quality registry has implemented measures over the past year to increase reporting, and will continue to work on this in the coming year and develop more measures to ensure better reporting for the year 2025.