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Invisible Cancer: Years Lost to Misdiagnosis
4 Feb
Summary
- Patients wait years, facing multiple referrals before diagnosis.
- Rare cancer rates surged significantly compared to others.
- Common misdiagnoses include IBS, asthma, or menopause.

Experts are sounding the alarm regarding the delayed diagnosis of neuroendocrine cancer, an 'invisible' illness impacting thousands. Neuroendocrine Cancer UK (NCUK) highlights an urgent need to accelerate diagnosis for this group of cancers originating in hormone-producing nerve and gland cells.
Analysis indicates a staggering 371% rise in neuroendocrine cancer rates in England between 1995 and 2018, far exceeding the increase for other cancers. This often leads to a protracted diagnostic journey, averaging four-and-a-half years, with many patients seeking help over ten times before receiving answers.
Symptoms such as unexplained weight loss, fatigue, pain, and skin flushing are frequently misattributed to conditions like irritable bowel syndrome, asthma, or menopause. This delays crucial treatment, allowing the cancer to advance to more severe stages, complicating management and increasing patient suffering.
Patients describe the prolonged period of not knowing as isolating and frightening, exacerbated by inconsistent care. Faster diagnosis is critical, as it broadens treatment options and can improve management outcomes, even for advanced disease. The current situation causes significant physical and emotional distress.




