Neuroendocrine tumors may present a broad range of disease manifestations in primary site, grade, stage and systemic secretions. The NET patient does not have to look very far to learn that NETs are rare and that the experience level of the treating physician is very important. This is emphasized in nearly every patient online site and support group. Experience in the treatment and care of these patients is hugely important for best practices and a patient’s confidence in care. The importance of a multidisciplinary care team cannot be overstated.

There are many guidelines in place such as those from NCCN, NANETS and ENETS that can help practitioners better understand the disease pathways to consider in the surveillance, treatment and management of the disease. Physicians who are not highly experienced with NETs may effectively manage NET patient care by engaging a knowledgeable team, having a commitment to being current in the field, and seeking consultation when appropriate. It is important to be forthcoming with patients regarding personal experience and to express the readiness to research on patients’ behalf. Physicians are encouraged to reach out for guidance and collaboration to their closest large academic center that has an interest in NETs or a regional expert physician. A willingness to engage others will reassure patients, promote a trusting relationship and ensure that the optimum management plan is designed.


Management of these patients is complex. Treatment by a multidisciplinary team may include radiologists, gastroenterologists, medical oncologists, endocrinologists, cardiologists, nuclear medicine specialists, surgeons, and others. This can create questions about who is truly managing the NET patient’s care. Without established lines of communication, the multiple points of care can be overwhelming to patients who may start to feel lost in the system and unsure of who governs what. It is important to establish who ultimately serves as “quarterback” of the multidisciplinary team. That physician will then take the lead and help coordinate with the patient how to best approach 13 management and treatment. This will allow patients to feel more secure that someone is leading the charge of their care. This is especially important when it pertains to decisions regarding the proper sequencing of multiple diagnostic and therapeutic interventions.

Treating the NET patient can involve challenges that go well beyond treatment decisions. Patients often interact with the medical system for years before a correct diagnosis is made. This can result in patients presenting with greatly impaired quality of life and with significant trust issues in medical systems and practitioners. Couple this with a rare diagnosis that is hard to understand, and the situation becomes confusing and overwhelming for patients and their families. Understanding and attending to these issues can help guide physician strategies for a successful initial consultation.