Questions to ask: Neuroendocrine tumors (NETs)

Diagnosis

• Where did my NET start, and has it spread?
• What is the grade, and what was my Ki-67 number?
• Is my tumor a well-differentiated NET or a neuroendocrine carcinoma?
• Does my tumor make hormones? Are my symptoms coming from it?
• Did I have a somatostatin receptor PET scan, and did the tumor light up?
• What is my stage, and what does it mean for me?
• Do I need a heart ultrasound to check for carcinoid heart disease?
• Should I have genetic testing for an inherited syndrome like MEN1?
• Is the goal to cure the tumor, or to control it long term?
• Should I be seen at a center that treats many NET patients?
• Is there a clinical trial I should think about?

Before

• What treatment do you suggest, and why this one for me?
• Can surgery remove my tumor? Should my gallbladder be removed at the same time?
• Would watching closely be safe for me instead of starting treatment now?
• How often will I get somatostatin analog shots, and can I get them at home or a nearby clinic?
• Am I a candidate for PRRT now or later?
• What side effects are most likely, and which ones should I call about right away?
• How will you prevent a carcinoid crisis during surgery or procedures?
• Which foods or medicines should I avoid before my 5-HIAA test?
• Will treatment affect my work, travel, or daily life?
• How much will treatment cost, and who can help with insurance?
• How can my family or caregiver help?

During

• How will we know if the treatment is working?
• How often will I have scans and blood tests?
• Is my flushing or diarrhea under good control, or should we add something?
• Are my blood counts and kidneys safe for the next PRRT dose?
• What radiation safety steps should I follow at home after PRRT, and for how long?
• Should I check my blood sugar or blood pressure at home?
• Can my dose be changed if side effects are too hard?
• Should I see a dietitian about my diarrhea, weight, or vitamins?
• If this treatment stops working, what are the next options?
• Who do I call at night or on weekends?

After

• How often will I need scans and blood tests, and for how many years?
• What signs could mean the tumor is growing or has come back?
• Do I need to stay on somatostatin analog shots long term?
• What long-term side effects should I watch for?
• Should I keep having heart ultrasounds?
• Should my children, brothers, or sisters have genetic testing?
• Who will be my main doctor for follow-up?
• Where can my family and I find NET support groups?

Last updated: 2026-10-27. Medically reviewed by Veli Bakalov, MD, medical oncologist (October 2026). General education from Step by Step, the patient portal of HemeOncBuddy.