Neuroendocrine Tumors | Diagnosis & Treatment

How are neuroendocrine tumors (NETs) diagnosed?

The first step in treating your child is checking symptoms and forming a complete diagnosis.

Your child’s physician may order a number of different tests including:

There may be other diagnostic tests that your doctor will discuss with you depending on your child's individual situation. After we complete all necessary tests, our experts meet to review and discuss what they have learned about your child's condition. Then we will meet with you and your family to discuss the results and outline the best possible treatment options.

What are the treatment options for NETs?

Treatment for your child's neuroendocrine tumor will depend on its type and location. Your child's doctor may recommend:

Different groups of chemotherapy drugs work in different ways. Your child may receive chemotherapy orally, intramuscularly, intravenously or intrathecally. Often, a combination of chemotherapy drugs is used.

While chemotherapy can be quite effective in treating certain cancers, the drugs cannot differentiate normal healthy cells from cancer cells. As a result, there can be adverse side effects during treatment. Being able to anticipate these side effects can help the care team, child, and family prepare and, in some cases, prevent these complications from occurring, if at all possible.

What is the long-term outlook for children with NETs?

Children with a neuroendocrine tumor of the appendix typically have a good prognosis after surgery. By the time they are diagnosed, neuroendocrine tumors outside the appendix have often spread or are larger. Bigger neuroendocrine tumors tend to come back more often, which we would consider in designing the treatment and follow-up plans.

Children treated for neuroendocrine tumors should visit a survivorship clinic yearly. Through the David B. Perini, Jr. Quality of Life Clinic, our cancer survivorship clinic, childhood cancer survivors receive a comprehensive follow-up evaluation from their cancer care team. In addition to meeting with your pediatric oncologists, your child may see one of our endocrinologists, cardiologists, neurologists, neuro-psychologists, or alternative/complementary therapy specialists. We also offer patient and family education, psychosocial assessment, genetic counseling, reproductive counseling, and opportunities to speak with other childhood cancer survivors.