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PubMed This is a summary of 16 peer-reviewed journal articles Updated
Oncology

Building Your Care Team and Preparing for Appointments

At a Glance

The gold standard for neuroendocrine neoplasm (NEN) care is a multidisciplinary team of specialists, including oncologists, pathologists, and nuclear medicine experts. Treatment plans often improve when reviewed by an expert tumor board, making it critical to seek care at a high-volume center.

Because neuroendocrine neoplasms (NENs) are rare and biologically complex, managing them is often too much for a single doctor to handle alone. The current “gold standard” for NEN care is a Multidisciplinary Team (MDT) approach [1][2]. Research shows that when a dedicated team of experts reviews a NEN case, the treatment plan is changed for over 60% of patients to better match the specific biology of their tumor [1][3].

Your Essential Care Team

A “dedicated” NEN team consists of several specialists who meet regularly (often called a Tumor Board) to discuss cases [4][5]. Your core team should include:

  • Medical Oncologist: The “quarterback” who coordinates systemic treatments like chemotherapy or targeted drugs.
  • Surgical Oncologist: A surgeon who specializes in NENs, particularly for complex liver debulking or intestinal resections [4].
  • Nuclear Medicine Physician: An expert in “theranostics” who handles SSTR-PET scans and PRRT (Lutetium-177) [6].
  • Pathologist: A specialist who looks at your biopsy slides to confirm the grade, Ki-67 index, and differentiation (NET vs. NEC) [7][8].
  • Endocrinologist: Helps manage the hormone-related “syndromes” like Carcinoid Syndrome or Insulinoma [9].
  • Radiologist: A specialist who interprets CT and MRI scans specifically to track NEN growth [10].

Vetting Your Medical Team

Not every oncologist is a NEN expert. Because these tumors are rare, it is crucial to ask “vetting questions” to ensure you are receiving specialized care:

  1. “How many NEN patients do you treat each year?” High-volume centers of excellence often see dozens or even hundreds of new cases annually, leading to better outcomes [11][12].
  2. “Will my case be reviewed by a NEN-specific tumor board?” Expert centers use consensus from many specialists rather than just one doctor’s opinion [4][3].
  3. “Do you have experience with PRRT and specialized imaging (Ga-68 DOTATATE)?” These are essential tools that may not be available at every local hospital [13][14].
  4. “Do you have a registered dietitian on your team who understands NENs?” Given the complex nutritional and malabsorption issues (like Pellagra or pancreatic insufficiency) associated with NENs, dietary expertise is crucial.

Preparing for Your First Consultation

Specialists at expert centers often perform their own “secondary review” of your data to ensure accuracy [3][15]. To make your first visit productive, you must bring the following physical records:

  • Imaging Discs: Not just the printed reports, but the actual digital files (CD/DVD/USB) of your CT, MRI, and PET scans [10].
  • The Full Pathology Report: Ensure it includes the Ki-67 index and differentiation [7].
  • Lab Results: Recent blood work for Chromogranin A or 24-hour urine results for 5-HIAA [16].
  • Surgical Reports: If you have already had surgery, the “operative note” describing what the surgeon saw and did.

Navigating a NEN diagnosis is a team effort. By assembling the right experts and providing them with complete data, you ensure that your treatment plan is based on expert consensus rather than a single perspective [5][15].

Common questions in this guide

Why do I need a multidisciplinary team for a neuroendocrine neoplasm?
NENs are rare and biologically complex, requiring expertise from multiple medical fields. A multidisciplinary team, or tumor board, brings specialists together to review your specific tumor biology, which often leads to a more personalized and effective treatment plan.
Which doctors should be on my NEN care team?
Your core team should include a medical oncologist, surgical oncologist, nuclear medicine physician, pathologist, endocrinologist, and radiologist. Working together, they coordinate everything from complex surgeries and targeted radiation to managing hormone-related symptoms.
What questions should I ask to ensure my doctor is a NEN expert?
Ask how many NEN patients they treat each year and if your case will be reviewed by a NEN-specific tumor board. High-volume centers of excellence see dozens of cases annually and use expert consensus rather than a single doctor's opinion to guide your care.
What records do I need to bring to my first NEN appointment?
Bring the digital files (CD, DVD, or USB) of all your imaging scans, your full pathology report including the Ki-67 index, recent lab results, and any past surgical notes. These physical records allow specialists at expert centers to perform their own secondary review of your case.
Do I need a dietitian on my NEN care team?
Yes, a registered dietitian who understands NENs is crucial. They can help manage complex nutritional issues and malabsorption problems, such as Pellagra or pancreatic insufficiency, that are frequently associated with these tumors and their treatments.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.How many patients with my specific type of NEN do you treat each year?
  2. 2.Does your hospital have a dedicated NEN-specific multidisciplinary tumor board that will review my case?
  3. 3.Do you have a registered dietitian on your team who specifically understands the unique nutritional needs and malabsorption issues of NEN patients?
  4. 4.Is your pathologist experienced in differentiating between G3 NETs and NECs, and do they use the most recent WHO classification?
  5. 5.Do you have a dedicated nuclear medicine team on-site for SSTR-PET imaging and PRRT?

Questions For You

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References

References (16)
  1. 1

    Evaluation of multidisciplinary team decisions in neuroendocrine neoplasms: Impact of expert centres.

    Zandee WT, Merola E, Poczkaj K, et al.

    European journal of cancer care 2022; (31(6)):e13639 doi:10.1111/ecc.13639.

    PMID: 35735226
  2. 2

    Surgical Management of Gastroenteropancreatic Neuroendocrine Tumors.

    Kenney LM, Hughes M

    Cancers 2025; (17(3)) doi:10.3390/cancers17030377.

    PMID: 39941746
  3. 3

    The role of multimodal treatment in patients with advanced lung neuroendocrine tumors.

    Fazio N, Ungaro A, Spada F, et al.

    Journal of thoracic disease 2017; (9(Suppl 15)):S1501-S1510 doi:10.21037/jtd.2017.06.14.

    PMID: 29201453
  4. 4

    How to Select Patients Affected by Neuroendocrine Neoplasms for Surgery.

    Fermi F, Andreasi V, Muffatti F, et al.

    Current oncology reports 2022; (24(2)):227-239 doi:10.1007/s11912-022-01200-8.

    PMID: 35076884
  5. 5

    ENETS standardized (synoptic) reporting for endoscopy in neuroendocrine tumors.

    Borbath I, Pape UF, Deprez PH, et al.

    Journal of neuroendocrinology 2022; (34(3)):e13105 doi:10.1111/jne.13105.

    PMID: 35233848
  6. 6

    Neuroendocrine Neoplasms: Genetics and Epigenetics.

    Smith J, Barnett E, Rodger EJ, et al.

    PET clinics 2023; (18(2)):169-187 doi:10.1016/j.cpet.2022.11.003.

    PMID: 36858744
  7. 7

    Differentiating well-differentiated neuroendocrine tumors grade 3 from poorly differentiated neuroendocrine carcinomas and adenocarcinoma with neuroendocrine differentiation: a comprehensive review.

    Bahceci D, Adsay V, Basturk O

    Virchows Archiv : an international journal of pathology 2026; (488(1)):45-64 doi:10.1007/s00428-025-04336-7.

    PMID: 41276674
  8. 8

    A Comprehensive Review on Neuroendocrine Neoplasms: Presentation, Pathophysiology and Management.

    Sultana Q, Kar J, Verma A, et al.

    Journal of clinical medicine 2023; (12(15)) doi:10.3390/jcm12155138.

    PMID: 37568540
  9. 9

    Better Management for Neuroendocrine Neoplasms: A Complex Task Ahead.

    Coriat R

    Journal of clinical medicine 2021; (10(9)) doi:10.3390/jcm10091859.

    PMID: 33922910
  10. 10

    Preliminary experience with a new institutional tumor board dedicated to patients with neuroendocrine neoplasms.

    Trikalinos NA, Hammill C, Liu J, et al.

    Abdominal radiology (New York) 2022; (47(12)):4096-4102 doi:10.1007/s00261-022-03707-x.

    PMID: 36266515
  11. 11

    The University of Iowa Neuroendocrine Tumor Clinic.

    Howe JR, Menda Y, Chandrasekharan C, et al.

    Endocrine practice : official journal of the American College of Endocrinology and the American Association of Clinical Endocrinologists 2025; (31(1)):4-18 doi:10.1016/j.eprac.2024.09.018.

    PMID: 39349242
  12. 12

    Factors Influencing Costs of Cancer Care for Patients with Neuroendocrine Neoplasms.

    Weickert MO

    Neuroendocrinology 2025; (115(12)):935-956 doi:10.1159/000544050.

    PMID: 39938507
  13. 13

    Neuroendocrine Tumors: Diagnostics.

    Sakellis C, Jacene HA

    PET clinics 2024; (19(3)):325-339 doi:10.1016/j.cpet.2024.03.008.

    PMID: 38714399
  14. 14

    Safety and Efficacy of 68Ga-DOTATATE PET/CT for Diagnosis, Staging, and Treatment Management of Neuroendocrine Tumors.

    Deppen SA, Liu E, Blume JD, et al.

    Journal of nuclear medicine : official publication, Society of Nuclear Medicine 2016; (57(5)):708-14 doi:10.2967/jnumed.115.163865.

    PMID: 26769865
  15. 15

    What Is New in the 2017 World Health Organization Classification and 8th American Joint Committee on Cancer Staging System for Pancreatic Neuroendocrine Neoplasms?

    Choe J, Kim KW, Kim HJ, et al.

    Korean journal of radiology 2019; (20(1)):5-17 doi:10.3348/kjr.2018.0040.

    PMID: 30627018
  16. 16

    Perspectives on the diagnostic, predictive and prognostic markers of neuroendocrine neoplasms (Review).

    Ciobanu OA, Martin S, Fica S

    Experimental and therapeutic medicine 2021; (22(6)):1479 doi:10.3892/etm.2021.10914.

    PMID: 34765020

This page provides educational information on assembling a NEN care team and preparing for medical appointments. It does not replace professional medical advice. Always consult your healthcare provider about your specific situation.

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