Cancer Patient in Treatment Limbo: 'My Tumors Aren't Big Enough for Lifesaving Care'
Kerie Ivory, a patient living with incurable stage 4 neuroendocrine cancer, finds herself in a heartbreaking medical paradox. Despite having multiple tumors in her liver and spine, she is denied recommended treatments because her cancerous growths are deemed too small and slow-growing. In a recent consultation in January 2026, her consultant reiterated, 'I think we'll carry on with what we're doing,' a phrase that has become all too familiar, leaving Kerie in a state of conflicted emotions as the current plan involves no active intervention.
The Burden of Living with Untreated Cancer
Kerie's cancer, classified as grade 1 due to its slow progression, consists of sub-centimetre tumors that do not meet the criteria for standard treatments. She undergoes check-ups every four months, each visit bringing a mix of relief and frustration. While she is grateful to hear her tumors haven't grown, the relentless fatigue from the cancer severely impacts her quality of life, making everyday activities like running or cooking for her family impossible. She has been forced to give up work, exacerbating her mental health struggles, which she once managed by staying busy.
A Long and Arduous Diagnostic Journey
Kerie's health ordeal began in 2012 when she was diagnosed with a small bowel neuroendocrine tumor at age 37, after a 15-month diagnostic delay. Initial symptoms at 36 included a persistent cough misdiagnosed as rhinitis, asthma, and reflux by her GP. As fatigue set in, blood tests revealed anemia, but she was dismissed as a 'tired and overworked mother.' Severe bloating led to an IBS misdiagnosis and ineffective medication, with her GP assuring her, 'You don't have cancer,' and noting no 'red flag' symptoms.
It wasn't until a locum doctor reviewed her records in November 2011 that she was referred to a gastroenterologist. An ultrasound, initially suggested for reassurance, uncovered an enlarged lymph node, prompting an MRI that confirmed a mass. A colonoscopy revealed an almost total bowel obstruction, and she was diagnosed with stage 3 cancer that had spread to local tissues and lymph nodes. Kerie underwent major abdominal surgery, removing the tumor and sections of her intestines, with a long recovery that allowed life to normalize temporarily.
Progression to Incurable Stage 4 Cancer
Regular scans every six months for five years, then annually, seemed to keep the cancer at bay until 2019, when it spread to her liver, leading to a stage 4 incurable diagnosis. Further surgery in 2019 removed liver tumors, but a recurrence in 2021 and new spinal lesions confirmed in 2024 and 2025 have compounded her condition. Currently, she has two confirmed metastases in her spine and several smaller lesions, yet treatment options remain elusive.
Failed Treatment Attempts and Ongoing Challenges
Kerie's consultant emphasizes that surgical removal is the best treatment, but the tumor's awkward placement ruled out further liver surgery. Radiotherapy was attempted but only minimally reduced the tumor size. Other options, such as alcohol ablation, were denied because the tumor was too small for precise ultrasound guidance. Psychologically, the inability to act against the cancer's steady growth is devastating, though support from Neuroendocrine Cancer UK (NCUK), counseling, and medication provide some relief.
Despite the hardships, Kerie maintains a positive outlook, finding strength and resilience through her experience. She anticipates a future appointment where progression may finally warrant treatment, but the timing remains uncertain. Her story highlights the complex realities faced by patients with slow-growing cancers, caught in a limbo between disease management and active care.
