Pediatric Neuroendocrine Tumor Clinical and Research Program
The UK HealthCare Pediatric Neuroendocrine Tumor Clinical and Research Program offers a collaborative, evidence-based approach to treating children with neuroendocrine tumors.
That means that you and your family have the support of our team throughout your medical journey. Our experts will develop and oversee your child’s individualized care plan. This starts with diagnosis, all the way to survivorship.
In addition to treating NETs, we also work to diagnose children who are at risk for NETs. We monitor kids who are at risk closely for signs that a neuroendocrine tumor is developing. Our specialists can offer second opinions. They will work with your local physician to ensure your child gets the best care close to home.
What is a neuroendocrine tumor?
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).
NETs are considered extremely rare among children and young adults. Today, though, these tumors are being diagnosed at higher rates compared with roughly four decades ago.
Long-term, disease-free survival can be achieved through surgery if NETs are found in the early stage.
Most NETs grow slowly. But they can also grow quickly and spread to other parts of the body and nearby tissues.
The appendix is the most common site for neuroendocrine tumors. However, NETs can be found in many other organs, including:
- Gastrointestinal tract
- Lungs
- Liver
- Pancreas (sometimes called islet cell tumors)
Neuroendocrine tumors are sometimes misdiagnosed for another type of tumor at the same site of origin.
Some – but not all – NETs secrete hormones. The excessive production of hormones might cause specific symptoms in your child.
Neuroendocrine tumor symptoms
The signs and symptoms of neuroendocrine tumors vary based on where the tumor is located as well as its size. These symptoms can also be similar to other conditions.
Your child may experience these symptoms of neuroendocrine tumors:
- Stomach pain
- Nausea and vomiting
- Diarrhea
- Flushing of the face
- Fast heartbeat
- Weight changes
- Trouble breathing
Neuroendocrine tumor diagnosis
Diagnosis begins with a detailed medical and family history review as well as 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
Neuroendocrine tumor causes
Children who have a strong genetic link to someone diagnosed with NETs — such as a parent or sibling — are at a much higher risk for developing the disease. This is because of an inherited disorder known as multiple endocrine neoplasia (MEN) syndrome.
Additionally, your child may be at higher risk for NETs if they have any of these other conditions:
- Familial medullary thyroid cancer (FMTC) syndrome
- von Hippel-Lindau syndrome
- Hereditary pheochromocytoma and paraganglioma syndromes
- Carney triad
What to expect at your appointment
Your child will have a physical exam and meet with specialists in our pediatric neuroendocrine and oncology clinics. We may perform tests during your visit. We make every attempt to coordinate tests and exams so you only need one initial visit.
Our team will then develop a care plan that is tailored to your child’s unique needs. The timing of follow-up visits will depend on the type of treatment your child receives.
Neuroendocrine tumor treatments
Your child may receive one or multiple treatment options to shrink or eliminate the neuroendocrine tumor entirely. 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. We offer the following types of treatments and targeted therapies for neuroendocrine tumors:
- 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: Targets radiation specifically to the tumor cells with help of a radioactive pharmaceutical agent
Clinical trials
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.
Make an appointment
To make a new patient appointment, call us at 859-257-4488.
