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Neuroendocrine Cancer - The Expert Patient

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The episode features Dr. David Bartlett, a retired GP and neuroendocrine cancer patient, offering a dual perspective as both clinician and patient.

Key Learnings from this episode.

Patient Experience and Diagnostic Challenges

  • Dr. Bartlett’s symptoms began with severe, intermittent abdominal pain, starting in 2001, but he did not seek medical help for several years due to a combination of stoicism, not wanting to trouble others, and a belief in the commonality of benign causes.
  • Over 15 years, he experienced repeated misdiagnoses, primarily being labeled as having irritable bowel syndrome (IBS) despite atypical features (severe pain, minimal bowel habit change, and no systemic symptoms).
  • Multiple opinions and investigations (including ultrasounds and CT scans) failed to identify the underlying cause, with a key scan being misread by local radiologists.
  • The correct diagnosis of a small bowel neuroendocrine tumour was only made after a tertiary centre re-examined previous scans, highlighting the importance of specialist review and persistence in unexplained cases.

    • Clinical Red Flags and Symptomatology

    • Dr. Bartlett’s case underscores that neuroendocrine tumors can present with isolated, severe abdominal pain without classic red flags (vomiting, weight loss, significant bowel changes)[1].
  • He retrospectively identified subtle signs of carcinoid syndrome (flushing, one episode of profound diarrhoea, and skin changes), which are present in only about 10% of small bowel neuroendocrine tumour cases.
  • The lack of awareness about neuroendocrine tumors, even among experienced clinicians, contributed to the diagnostic delay[1].

    • Lessons for Primary Care and Clinicians

    • The story illustrates the risk of anchoring on common diagnoses (like IBS) and the need to reconsider the diagnosis when symptoms are severe, persistent, or atypical.
  • It highlights the value of listening to the patient’s narrative, especially when symptoms do not fit classic patterns, and the importance of considering rare conditions in the differential diagnosis.
  • The episode emphasises the need for ongoing education about neuroendocrine tumours and the importance of keeping rare but serious conditions on the diagnostic radar in primary care.

    • Management Insights

    • Standard treatment for small bowel neuroendocrine tumours often includes monthly somatostatin analog injections (e.g., lanreotide).
  • Surgical intervention may be considered, but it carries specific risks such as carcinoid crisis, requiring specialised perioperative management.
  • The decision for surgery is individualised, weighing potential symptomatic improvement against procedural risks.

    • Systemic and Human Factors

    • Dr. Bartlett’s experience reflects how personal traits (stoicism, reluctance to seek help) and systemic issues (misinterpretation of scans, diagnostic inertia) can delay diagnosis.
  • The narrative also demonstrates the importance of patient advocacy, persistence, and the value of second (or third) opinions, especially in complex or unresolved cases.

    • Educational Value

    • The episode serves as a reminder for clinicians to maintain a broad differential, revisit diagnoses when the clinical picture changes, and to be aware of their own cognitive biases.
  • It also advocates for the inclusion of patient voices in medical education to better understand the lived experience and challenges of rare diseases like neuroendocrine cancer.

    • Summary Table: Key Learnings

    ThemeKey PointsDiagnostic Delay15 years from symptom onset to diagnosis; misdiagnosed as IBS despite atypical featuresSymptomatologySevere, intermittent abdominal pain; minimal bowel changes; subtle carcinoid syndromeClinical LessonsImportance of specialist review, reconsidering diagnoses, and listening to patient storiesManagementUse of somatostatin analogs; surgery considered but with specific risksSystemic FactorsImpact of stoicism, misread scans, and diagnostic inertiaEducational TakeawayNeed for awareness of rare conditions and patient-centered education

    These insights from the transcript highlight the complexities of diagnosing and managing neuroendocrine cancer, especially in primary care, and the critical role of patient experience in improving clinical practice.

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