Send the referral to the following address: 
Sektionen för onkologisk endokrinologi 
Akademiska sjukhuset, ingång 100 
751 85 Uppsala

You can contact the consultant for endocrine oncology by phone, 018-617 07 87.

The Endocrine Surgery Consultant can be reached via the switchboard: 018-611 00 00.

Neuroendocrine tumours of the abdomen

The following patient groups should receive an MDK assessment at an NHV unit after initial assessment is carried out by specialised care. All anti-tumour and surgical treatment beyond SSA as well as liver-targeted treatment in these patient groups must take place at the NHV unit.

Small bowel NET including valve surgery in carcinoid heart disease (CHD)

Metastatic small bowel NET with at least one of the following criteria, as a sign of advanced disease:

• Presence of carcinoid heart disease (diagnosed by echocardiography and cardiologist assessment). Selected patients at risk of CHD should be screened with NT-proBNP (presence of liver metastases or extensive other metastasis and significantly elevated 5HIA). Patients with elevated NT-proBNP should be referred for echocardiography and cardiological assessment.
• Threatening intestinal ischaemia. Defined as abdominal pain (postprandial) in combination with radiological signs of ileus. Centrally located LGLL metastases carry a high risk of intestinal ischaemia, and are thus interpreted as advanced disease.
• Failure to respond to treatment. In advanced SINET, SSA treatment should be evaluated after 3 months. Consideration should then be given to whether there has been a lack of response to treatment and whether 5HIA levels are unacceptably high. This means, for example, residual significant carcinoid syndrome.
• Peritoneal carcinomatosis with secondary effects (ascites, ileus).
• Rapidly progressive disease. This is defined as radiological and/or biochemical progression after 6 months of ongoing SSA treatment.

Other JEP-NETs

• Inoperable rectal NET (assessment should have taken place at the MDK)
• All pancreatic NETs including duodenal NETs
• Newly diagnosed MEN1
• NET in the presence of MEN1 and vHL.

Adrenal tumours

Patients with adrenal tumours measuring ≥6 cm should be referred to the NHV unit for assessment and treatment. All patients with an adrenal tumour, regardless of size, where primary adrenal malignancy is suspected, should be referred to the NHV unit for assessment and treatment.

Related information on endocrine tumours on our website

Centre of excellence for endocrine tumours

More background on NET and adrenal care

Related information on other websites about neuroendocrine tumours

Neuroendocrine system (EURACAN.eu)

ENETS Centers of Excellence (CoE) (enets.org)