A Mother's Agonising Wait: Living with an 'Invisible' Cancer
For Kerie Ivory, a 52-year-old mother-of-two from Buckinghamshire, what began as persistent cough and acid reflux symptoms spiralled into a devastating medical odyssey that would change her life forever. Initially diagnosed with rhinitis, post-nasal drip and asthma by her GP, the underlying reality proved far more sinister. 'I kept going back and forth to my GP, who dismissed my symptoms,' Ms Ivory recalls. 'By then I was so fatigued I was on my knees. I had to choose whether to eat or have a shower.'
The Long Road to Diagnosis
Fifteen months after first presenting symptoms, Ms Ivory began experiencing severe bowel issues including dramatic bloating, wind and stomach pain. 'My stomach would be flat in the morning, then over the day it would balloon,' she describes. 'I looked five months pregnant by the evening.' This led to a colonoscopy that revealed a tumour blocking the scope's path - the first concrete evidence of neuroendocrine cancer.
The diagnosis came nearly four-and-a-half years after the cancer likely began developing, only occurring after Ms Ivory changed GPs. She subsequently underwent extensive surgery removing lymph nodes, sections of her intestines, her ileocecal valve, appendix, and parts of her liver and gallbladder. Yet the cancer persists, with recent scans showing lesions in her liver, spine and rib.
The Frustrating Reality of Neuroendocrine Cancer
Neuroendocrine cancer represents a particularly challenging category of malignancies that develop in hormone-releasing cells throughout the body. There are two main types:
- Neuroendocrine tumours (NETs)
- Neuroendocrine carcinomas (NECs), which grow rapidly
These cancers can develop in various locations including the stomach, pancreas, lungs and, as in Ms Ivory's case, the bowel. Their symptoms often mimic other conditions, leading to frequent misdiagnoses as irritable bowel syndrome, asthma or menopause symptoms.
Common symptoms include:
- Unexplained weight loss
- Severe fatigue
- Pain and discomfort
- Digestive issues including diarrhoea and bloating
- Respiratory symptoms like persistent cough
- Flushing rashes
The National Picture: A Growing Concern
According to Neuroendocrine Cancer UK (NCUK), approximately 6,000 people in England receive this diagnosis annually, with diagnosis typically taking around four years. Alarmingly, more than half of cases are identified at advanced stages, significantly limiting treatment options.
Analysis reveals concerning trends: between 1995 and 2018, neuroendocrine cancer rates increased by 371 percent, compared to 116 percent for other cancers (excluding non-melanoma skin cancer). This dramatic rise underscores the growing importance of awareness and early detection.
Living in Limbo: The Treatment Dilemma
For Ms Ivory, the most frustrating aspect involves waiting for tumours to grow large enough to treat. 'I am constantly waiting for the tumours to grow big enough to get treatment that is appropriate for me,' she explains. 'It's hard living with a slow growing, creeping cancer. It's devastating knowing I have it and we are not treating it.'
The disease has completely transformed her daily existence. 'I have to limit what I do every day. Sometimes it may only be one thing,' she reveals. Simple activities like washing her hair require careful consideration of energy expenditure. The impact extends to her family, with her children struggling to accept that 'it's never going away and that at times it will grow and need treatment.'
Advocacy and Awareness Efforts
Ms Ivory now works with NCUK on their World Cancer Day campaign, hoping to increase recognition of this complex condition. Lisa Walker, CEO of NCUK, emphasises the unique challenges: 'A key part of the challenge of neuroendocrine cancer is that it doesn't align with the common cancer narrative many expect. It doesn't act or look like more known cancers and unlike others, it isn't always about recovery or decline.'
Walker highlights the urgent need for improved diagnosis and care: 'Delays to diagnosis and inconsistent care cause serious and lasting harm. Precious time is lost, allowing the cancer to progress before people receive the treatment they need.'
The charity urges greater public awareness of symptoms and advocates for healthcare professionals to consider neuroendocrine cancer when patients present with persistent, unexplained symptoms. With earlier diagnosis and appropriate support, outcomes for patients like Kerie Ivory could be significantly improved, transforming lives currently overshadowed by this 'invisible' disease.
