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

Building Your Care Team and Long-Term Monitoring

At a Glance

Long-term care for Zollinger-Ellison syndrome requires a coordinated specialist team and individualized monitoring of acid control, PPI safety, gastrin trends, and tumor imaging. People with MEN1 need additional checks of calcium, pituitary hormones, and other pancreatic islet tumors.

Managing Zollinger-Ellison Syndrome (ZES) is a long-term commitment. Because this condition involves both a hormone-producing tumor and the secondary effects of excess acid, your care is best managed by a multidisciplinary team—a group of specialists who coordinate their expertise [1][2].

Your Care Team Specialists

You should ideally be followed at a center that specializes in neuroendocrine tumors (NETs) [1]. Your team will likely include:

  • Gastroenterologist (GI): The lead for managing acid control. They perform endoscopies and adjust your acid-blocking medications [3].
  • Endocrinologist: Essential if you have MEN1. They monitor other glands (like the parathyroid and pituitary) and manage hormonal balances [4].
  • Oncologist: A specialist who directs systemic treatments like somatostatin analogues or PRRT [5].
  • NET-Specialized Surgeon: A surgeon with specific experience operating on gastrinomas in the duodenum and pancreas [6].
  • Genetic Counselor: Helps you navigate testing for MEN1 and what it means for your relatives [7].

Creating a Personal Care Plan

It is highly recommended to keep a personal care-plan log. This should include your current PPI dose and timing, a symptom and stool frequency log, dates of recent lab work and imaging, and the contact information for your lead care coordinator.

Long-Term Monitoring Protocol

Monitoring has two main goals: ensuring your acid is safely suppressed and watching the tumor’s behavior [8][9].

1. Acid and Nutrition Checks

  • Nutrient and Kidney Levels: Long-term PPIs can interfere with absorption. Your team will individualize a schedule to check your Vitamin B12, Magnesium, and Kidney function (creatinine) [10][11][12].
  • Symptom Review: Discuss any “breakthrough” symptoms (like diarrhea or nighttime reflux) at every visit. This helps determine if your PPI dose needs adjustment [13].

2. Tumor Surveillance

If you have had surgery, you will enter a phase of systematic follow-up [8].

  • Biochemical Monitoring: Your doctor will track your serum gastrin. However, a rising gastrin level alone does not automatically mean the tumor has returned. Gastrin can fluctuate due to PPI dose timing, kidney function, H. pylori infection, or atrophic gastritis. A gastrin trend is always interpreted alongside your clinical symptoms and imaging [9]. Post-treatment “biochemical cure” is assessed carefully using standardized labs.
  • Imaging: You may undergo periodic cross-sectional imaging (like CT or MRI) to look for changes [8]. Functional imaging like a Ga-68 DOTATATE PET/CT may be used based on your specific tumor biology and lab trends [14][15].

3. MEN1-Specific Surveillance

If you have MEN1, your surveillance goes beyond the gastrinoma. Your endocrinologist will use a specific checklist tailored to your age and genetics, typically including:

  • Regular serum calcium and parathyroid hormone (PTH) checks.
  • Monitoring of pituitary hormones (e.g., prolactin, IGF-1).
  • Screening for other pancreatic islet tumors.

Quality of Life and “Scan Anxiety”

Living with a chronic, rare condition carries a psychological burden. The cycle of waiting for laboratory results and imaging is often called scan anxiety (or “scanxiety”) [16].

  • The Waiting Period: It is normal to feel increased stress before appointments. Create a communication plan with your doctor—knowing exactly how and when you will receive results—to help manage this anxiety.
  • Support Systems: Seek out reputable advocacy organizations (such as the Neuroendocrine Tumor Research Foundation or AMENSupport) for resources and community support rather than relying solely on informal groups [1].

Common questions in this guide

What specialists should be on my Zollinger-Ellison syndrome care team?
Care is usually coordinated by a gastroenterologist, endocrinologist, oncologist, and surgeon experienced with neuroendocrine tumors. A genetic counselor can help with MEN1 testing and family questions, and a nurse or care coordinator may help the specialists communicate.
What does long-term monitoring for Zollinger-Ellison syndrome involve?
Monitoring checks whether stomach acid remains controlled and whether the tumor is changing. Depending on your history, it may include symptom reviews, vitamin B12, magnesium and kidney-function tests, gastrin measurements, CT or MRI scans, endoscopy, and specialized functional imaging.
Does a high or rising gastrin level mean my tumor has returned?
Not necessarily. Gastrin can change because of proton pump inhibitor timing or dose, reduced kidney function, H. pylori infection, or atrophic gastritis, so doctors interpret the trend with symptoms and imaging rather than using one result alone.
How often will I need blood tests and scans after ZES surgery?
There is no single schedule for everyone. Your follow-up calendar is individualized using your tumor grade, surgical results, symptoms, lab trends, and imaging history, and may include blood work, CT or MRI, endoscopy, or functional imaging.
What should be checked if I take high-dose PPIs long term?
Your care team may set an individualized schedule to check vitamin B12, magnesium, and kidney function using creatinine. Tell your clinician about breakthrough diarrhea or nighttime reflux because symptoms can show that acid control or medication timing needs review.
What extra follow-up is needed if I have MEN1?
MEN1 surveillance goes beyond the gastrinoma and usually includes blood tests for calcium and parathyroid hormone, checks of pituitary hormones such as prolactin and IGF-1, and screening for other pancreatic islet tumors. The exact schedule is tailored to your age and genetic findings.
How can I manage anxiety before Zollinger-Ellison syndrome scans?
Feeling more stress while waiting for lab or imaging results is common with a chronic condition. Agree with your team on how and when results will be shared, and consider counseling or reputable neuroendocrine tumor support organizations if scan anxiety is interfering with daily life.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.Who is the lead coordinator of my multidisciplinary care team, and how do my different specialists (oncology, GI, surgery) communicate with each other?
  2. 2.Based on my tumor grade and surgical results, what is our specific calendar for blood work, imaging, and endoscopies for the next two years?
  3. 3.Since I am on long-term high-dose PPIs, what individualized schedule will we use to check my B12, magnesium, and kidney function?
  4. 4.If my gastrin levels begin to rise, what other clinical signs or tests will we use to determine if it is a true tumor recurrence versus a medication effect?
  5. 5.Do you have a specialized nurse or coordinator I can contact if I develop new symptoms between appointments?
  6. 6.Are there reputable advocacy organizations or support groups you recommend for people living with neuroendocrine tumors or MEN1?

Questions For You

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References

References (16)
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    Gastrinoma and Zollinger Ellison syndrome: A roadmap for the management between new and old therapies.

    Rossi RE, Elvevi A, Citterio D, et al.

    World journal of gastroenterology 2021; (27(35)):5890-5907 doi:10.3748/wjg.v27.i35.5890.

    PMID: 34629807
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    Gastric neuroendocrine neoplasms.

    Lamberti G, Panzuto F, Pavel M, et al.

    Nature reviews. Disease primers 2024; (10(1)):25 doi:10.1038/s41572-024-00508-y.

    PMID: 38605021
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    Successful Lifetime/Long-Term Medical Treatment of Acid Hypersecretion in Zollinger-Ellison Syndrome (ZES): Myth or Fact? Insights from an Analysis of Results of NIH Long-Term Prospective Studies of ZES.

    Ito T, Ramos-Alvarez I, Jensen RT

    Cancers 2023; (15(5)) doi:10.3390/cancers15051377.

    PMID: 36900170
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    Multiple Endocrine Neoplasia Type 1 (MEN1): An Update and the Significance of Early Genetic and Clinical Diagnosis.

    Kamilaris CDC, Stratakis CA

    Frontiers in endocrinology 2019; (10()):339 doi:10.3389/fendo.2019.00339.

    PMID: 31263451
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    The Zollinger-Ellison syndrome: is there a role for somatostatin analogues in the treatment of the gastrinoma?

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    Endocrine 2018; (60(1)):15-27 doi:10.1007/s12020-017-1420-4.

    PMID: 29019150
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    Surgical management of Zollinger-Ellison syndrome: Classical considerations and current controversies.

    Shao QQ, Zhao BB, Dong LB, et al.

    World journal of gastroenterology 2019; (25(32)):4673-4681 doi:10.3748/wjg.v25.i32.4673.

    PMID: 31528093
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    Assessing for Multiple Endocrine Neoplasia Type 1 in Patients Evaluated for Zollinger-Ellison Syndrome-Clues to a Safer Diagnostic Process.

    Singh Ospina N, Donegan D, Rodriguez-Gutierrez R, et al.

    The American journal of medicine 2017; (130(5)):603-605 doi:10.1016/j.amjmed.2016.11.035.

    PMID: 28011308
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    Prospective Evaluation of Results of Reoperation in Zollinger-Ellison Syndrome.

    Norton JA, Krampitz GW, Poultsides GA, et al.

    Annals of surgery 2018; (267(4)):782-788 doi:10.1097/SLA.0000000000002122.

    PMID: 29517561
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    [Management of gastrinoma].

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    Presse medicale (Paris, France : 1983) 2016; (45(11)):986-991 doi:10.1016/j.lpm.2016.04.012.

    PMID: 27262229
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    Long-Term Proton Pump Inhibitor-Acid Suppressive Treatment Can Cause Vitamin B12 Deficiency in Zollinger-Ellison Syndrome (ZES) Patients.

    Ito T, Ramos-Alvarez I, Jensen RT

    International journal of molecular sciences 2024; (25(13)) doi:10.3390/ijms25137286.

    PMID: 39000391
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    Common single nucleotide polymorphisms in transient receptor potential melastatin type 6 increase the risk for proton pump inhibitor-induced hypomagnesemia: a case-control study.

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    Pharmacogenetics and genomics 2017; (27(3)):83-88 doi:10.1097/FPC.0000000000000259.

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    SAFETY OF LONG-TERM PROTON PUMP INHIBITORS: FACTS AND MYTHS.

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    Gastrointestinal surveillance in patients with multiple endocrine neoplasia type 1 and Zollinger-Ellison syndrome.

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    Catching the Zebra: Clinical Pearls and Pitfalls for the Successful Diagnosis of Zollinger-Ellison Syndrome.

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    Prospective evaluation of 68 Ga-DOTATATE PET/CT in limited disease neuroendocrine tumours and/or elevated serum neuroendocrine biomarkers.

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    Pancreaticoduodenectomy Is the Best Surgical Procedure for Zollinger-Ellison Syndrome Associated with Multiple Endocrine Neoplasia Type 1.

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This page explains care-team coordination and long-term monitoring for Zollinger-Ellison syndrome for informational purposes only; it does not replace medical advice from your gastroenterologist, endocrinologist, or oncology team.

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