Neuroendocrine Cancer - The Expert Patient

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 t... Chapters

• (00:00:10) - Ingest
• (00:02:07) - David Bartlett on neuroendocrine cancer
• (00:05:32) - Irritable bowel syndrome, 15 years after first bout
• (00:12:09) - Carcinoid syndrome in small bowel neuroendocrine tumors
• (00:16:10) - Neuroendocrine tumour, surgery and recovery
• (00:20:43) - Somaostatin analogues for neuroendocrine cancer
• (00:25:43) - The role of the multidisciplinary team in bowel cancer care
• (00:28:21) - The battle with depression in your 50s
• (00:30:00) - General Practice and the Art of Medicine
• (00:33:13) - General Practice: The challenge of slowing down
• (00:35:35) - Neuroendocrine Cancer UK support group
• (00:39:28) - David's story of cancer
• (00:40:38) - David's Neuroendocrine Cancer Episode 1