'I'm shocked doctors haven't heard of my invisible cancer'

Three women in England have spoken publicly about living with neuroendocrine cancer, a disease that develops in hormone-producing cells scattered throughout the body. Donna Marklew, 44, from Coventry, was diagnosed only after tissue removed during a hysterectomy for a uterine prolapse was analysed at Warwick Hospital. "I was very shocked because I'd never heard of neuroendocrine cancer," she told the BBC. Scans later showed tumours in her appendix, Fallopian tubes and surrounding tissue. In March 2025 she underwent a nine-hour operation and now receives three weekly injections plus Peptide Receptor Radionuclide Therapy four times a week every two months. "The tumours are slow growing... mine are grade two, which means that they grow quite slowly, although mine are still growing," she said.

Rachel Wood, 55, from Shrewsbury, told Yahoo it took 18 months to diagnose her small-bowel neuroendocrine cancer that had spread to her liver and bones. "I was very surprised that so few people had heard about it - the general public, perhaps, but clinicians - that shocked me," she said. Wood described heartburn lasting years, an incidental liver finding on ultrasound, two MRIs, two PET scans and "vials of blood" that did not show usual cancer markers. "At no time in those 18 months did the consultant consider neuroendocrine cancer, not because he didn't want to, but because simply he had never heard of it - it's not part of his syllabus," she said. She has since had two major operations, radiotherapy and specialist care she calls "second to none."

Chesham resident Kerie Ivory, 52, diagnosed in 2012 with small-bowel neuroendocrine tumour involving the ileocecal valve and lymph nodes, features in a Neuroendocrine Cancer UK film launched for World Neuroendocrine Cancer Day on 10 November. "Fifteen years ago I knew something was seriously wrong with me but I couldn't get my GP to take me seriously. I eventually got my diagnosis after 18 months and was shocked to find out this was considered an early diagnosis for neuroendocrine cancer!" she said. She stopped work in 2022 due to severe fatigue.

Neuroendocrine Cancer UK estimates 6,000 people in the UK are diagnosed each year. Its new "Seen Too Late" report, based on the international SCAN survey led by INCA, says the average UK wait from first symptom to diagnosis is 4.7 years, up three months from six years ago. Patients visit their GP an average of 11 times before diagnosis; 51.9% were initially told they had something else, one in three more than once, and only 24% received the correct diagnosis the first time. Over half are diagnosed at advanced stages (3 & 4). Lisa Walker, the charity's chief executive, told the BBC: "The average time between people experiencing a first symptom and getting a diagnosis is five years... the symptoms could be other conditions, and then people find themselves perhaps going down a different route." She told Bucks Radio: "People should not have to wait years for their cancer to be recognised. We need to see change: recognising neuroendocrine cancer sooner, ensuring timely access to specialist expertise and making sure care is better connected around the person." The charity has published a Symptoms Checklist and is running patient support groups; Marklew started one in Leicestershire that grew from two to six attendees.