'I'm shocked doctors haven't heard of my invisible cancer'
BBCA woman who has incurable neuroendocrine cancer is calling for greater awareness of the rare disease, which she describes as an "invisible cancer".
Rachel Wood, 55, from Shrewsbury, has cancer in her small bowel that has spread to her liver and bones. She said it took 18 months for her to be diagnosed because healthcare professionals did not recognise the disease, which can develop in the stomach, bowel, pancreas or lungs.
"I was very surprised that so few people had heard about it - the general public, perhaps, but clinicians - that shocked me," said Wood.
The BBC has contacted NHS England and the Department for Health and Social Care for comment.
Neuroendocrine Cancer UK said more than 6,000 people in England are diagnosed with it every year.
In a report, the charity said that people in the UK wait for an average of 4.7 years to be diagnosed with the disease.
It said the cancer is difficult to recognise because symptoms vary and mimic other conditions like menopause, anxiety and asthma, adding that clinicians need "guidance, support and access to specialist expertise" to help with diagnoses.
"I think a lot of clinicians don't know about it, not just GPs, but even consultants, gastroenterologists, don't know about it," said Wood.
"It's such an invisible cancer, and yes, it's rare, but not so rare."
Wood said her symptoms included heartburn, which she had experienced for several years.
After an ultrasound for an unrelated issue, she said something was spotted on her liver.
"It then took 18 months beyond that of head-scratching," she said.
"I had two MRIs and two PET scans... they don't detect neuroendocrine cancer... vials of blood were taken, but they again don't show the usual markers for cancer.
"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.
'It needs to be on the syllabus'
Wood said waiting for a diagnosis while at a hospital in the east of England was stressful.
"You've got something, and you don't know what it is, and worse, in that time, it was growing, and it was growing quite quickly," she said.
"It's hard to remember; it's hard to say... but we all have a neuroendocrine system in our bodies, and it is something that any one of us can get cancer in that area at any age."
Wood said she ended up researching the disease herself after she was diagnosed and looking up specialists.
She has since had two major operations and is going through radiotherapy and has specialist care that is "second to none".
"I think the most important point is that neuroendocrine cancer needs to be on the syllabus," she said.
"At some point along the way, neuroendocrine cancer needs to be a major part of the syllabus so that every single GP, consultant, or even the general public could ask: 'Could it be neuroendocrine cancer?'
"That's what I would hope for."
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