Pediatric Neuroendocrine Tumor Clinical and Research Program

Neuroendocrine tumors (NETs) develop from specialized neuroendocrine tissue. Because this tissue is found throughout the body, these tumors can develop in different organs. NETs might also be called carcinoid cancer. Neuroendocrine tumors can be cancerous (malignant) or non-cancerous (benign). 

Long term disease free survival can be achieved in patients with help of surgery if NETs are detected in early stage. Others can grow quickly and spread throughout the body. Neuroendocrine tumors can be found in many organs, including:

• Appendix
• Gastrointestinal tract
• Lungs
• Pancreas (sometimes called islet cell tumors)

Teams from the Markey Cancer Center and the Kentucky Children’s Hospital meet regularly to discuss and plan treatment for children 18 and younger. These teams (known as tumor boards) specialize in neuroendocrine tumors and pediatric cancer. They understand the specific needs of children and how to treat them. 

Our team approach promotes better care and quality of life for the children we treat. Your child’s team will include experts in:

• Pediatric cancer
• Medical oncology (neuroendocrine tumors)
• Pediatric surgery
• Pediatric pathology
• Genetics
• Interventional radiology
• Nuclear medicine
• Radiation oncology

We can provide second opinions. In most cases, we can also develop a plan that allows your child to receive treatment in your home community. 

Treatment options depend on the type of tumor and might include:

• Surgery: Includes the removal of the tumor and surrounding tissue and is the most common treatment
• Radiation: Uses high-energy waves or particles to destroy cancer cells
• Chemotherapy: Uses special drugs that kill or shrink cancer cells
• Peptide Receptor Radionuclide Therapy: It is a smart way to administer targeted radiation specifically to the tumor cells with help of a radioactive pharmaceutical agent

Your child might be a candidate for a clinical trial. Clinical trials test the effectiveness of new drugs and other treatments. These experimental therapies provide options for children with hard-to-treat tumors. 

Children who are not good candidates for surgery or who have tried other standard treatments without success could be eligible for a clinical trial.

Diagnosis begins with a detailed medical and family history review and a physical exam. We also review any previous tests or imaging.

Tests we might use to diagnose neuroendocrine tumors include:

• Blood tests, to look for specific biomarkers, or signs of cancer
• Magnetic resonance imaging (MRI) or computerized tomography scan (CT scan), to get detailed images of the tumor and surrounding area
• Gallium 68 dotatate or Copper 64 dotatate positron emission tomography (PET), a specialized and highly sensitive PET scan that looks for neuroendocrine tumors

Your child will have a physical exam and meet with specialists in our pediatric neuroendocrine and oncology clinics. We might perform tests during your visit. We make every attempt to coordinate tests and exams so you only need one initial visit. 

Our teams then meet and develop a care plan. The timing of follow-up visits will depend on the type of treatment your child receives.

To schedule a new patient appointment, call us at 859-257-4488.