Insulinoma care
Specialist care
Care for an insulinoma addresses both low blood glucose (hypoglycaemia) and the tumour. ENETS recommends a multidisciplinary team: specialists who assess your results and plan treatment together.
Blood glucose and treatment
Regular meals, blood glucose monitoring and medicines may help control hypoglycaemia, including while awaiting surgery. Surgery is the main treatment for a localised insulinoma, meaning one that has not spread. If surgery is unsuitable or the tumour has spread, specialists consider other treatments.
Follow up
Follow up depends on the tumour and treatment. After an initial review following surgery, some people with a completely removed, localised, low grade insulinoma need no further routine tumour checks. Others need ongoing monitoring. Your specialist should confirm your plan. Seek medical advice if hypoglycaemia symptoms return.
Your care team
Depending on your needs, your care may involve a hormone specialist (endocrinologist), pancreatic surgeon, cancer specialist (oncologist), scan specialists, specialist nurse and dietitian. Your GP and counselling or other support services may also be involved.
Taking part in your care
Tell your team how your symptoms affect daily life and what matters most to you. Bring someone to appointments if helpful. Take notes, ask for explanations in plain English and discuss a second opinion if you remain uncertain.
Questions to ask
Who is my main contact, including if I need urgent help?
What should I do if my blood glucose falls, and what should my family or carer do?
What are my treatment options, benefits and risks?
What support can I have with eating, recovery and emotional wellbeing?
What follow up do I need, and which symptoms should I report?
Reference
Hofland J, Falconi M, Christ E, Castaño JP, Faggiano A, Lamarca A, Perren A, Petrucci S, Prasad V, Ruszniewski P, Thirlwell C, Vullierme MP, Welin S, Bartsch DK. European Neuroendocrine Tumor Society 2023 guidance paper for functioning pancreatic neuroendocrine tumour syndromes. Journal of Neuroendocrinology. 2023;35(8):e13318. https://doi.org/10.1111/jne.13318