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Updated on March 4, 2025
Neuroendocrine tumors (NETs) are cancers that arise from neuroendocrine cells, cells that produce hormones and other substances that regulate many different functions throughout the body, including respiration, heart rate, and blood pressure (to name just a few). Neuroendocrine cells act as a kind of bridge between the body’s nervous system and the endocrine system (the hormone-producing system). These cells are found throughout the body and there are many different types.
Neuroendocrine tumors (NETs) occur when cancerous cells develop from neuroendocrine cells. NETs can occur at any age, but most cases are diagnosed between ages 60 and 65. Because symptoms are often non-specific—and can look like other conditions—misdiagnosis and delays in diagnosis are common. People with NETs can spend several years and see multiple specialists before receiving an accurate diagnosis.
Treatment for NETs is individualized, with treatment recommendations based on numerous factors about the cancer and about the person being treated. Treatment can include surgery, radiation therapy, therapies that inhibit hormones, chemotherapy, and targeted therapy drugs.
Here, we look at questions to ask when starting a treatment for NETs.
Questions when starting a treatment for NETs
The different therapies that are used to treat NETs can be arranged into two general categories.
There are localized therapies, cancer treatments that target specific tumors in specific locations. These include surgery, radiation therapy, procedures that destroy tumors using heat or cold, and procedures that close off blood supply to tumors.
There are also systemic therapies, drugs that act on cancer cells throughout the body, or treat specific cancer symptoms (such as hormone-related symptoms). Chemotherapy, targeted therapy drugs, drugs that counteract excess hormones, and systemic radiation therapies would be placed into this category.
Questions to ask if you are being recommended a localized therapy, such as surgery:
- What is the name of the procedure?
- How does this procedure work?
- What is the goal of this procedure?
- What are the potential side effects and risks?
- Do I need any tests or exams before this procedure?
- What healthcare provider will perform this procedure?
- What will the recovery process be like?
- What will this procedure cost? What will insurance cover? Who can I talk to if I have concerns about the cost?
Questions to ask if you are being recommended a systemic therapy, such as an anti-cancer medication:
- What is the name of the therapy and the dosage?
- How does the therapy work?
- How is the therapy administered?
- How often will the therapy be taken? How long will I be taking this therapy?
- What is the goal of this therapy? How will we know it is working?
- What are the potential side effects? Is there a risk of serious side effects?
- How will I feel while taking this therapy? Are there things I will need to avoid, such as certain foods or activities?
- Can this therapy interact with other drugs or supplements I am taking? Always tell your healthcare provider about all medications you are taking, including medications for other conditions, over-the-counter medications, and supplements.
- What will this therapy cost? Who can I talk to if I have concerns about the cost?
You may have other questions or concerns, and you should always bring up any questions or concerns you have when talking to your healthcare team.
