A mother-of-two has been left facing an uncertain future after she was diagnosed with an ‘invisible’ cancer.
Kerie Ivory, 52, from Buckinghamshire, was struggling with a persistent cough and acid reflux and was diagnosed with rhinitis, post-nasal drip and asthma; but the underlying truth was much worse – she has neuroendocrine cancer.
Ms Ivory said: ‘I kept going back and forth to my GP, who dismissed my symptoms.
‘By then I was so fatigued I was on my knees.
‘I had to choose whether to eat or have a shower.
‘When they found I was anaemic, I wasn’t convinced this was the only thing wrong with me.
‘I thought: “I am a healthy young woman, this cannot be it”.’
Fifteen months after presenting with her initial symptoms, she was diagnosed with neuroendocrine cancer after experiencing bowel symptoms including severe bloating, wind and stomach pain.
Kerie Ivory has to wait for her cancerous tumours to become large enough to treat
She said: ‘My stomach would be flat in the morning, then over the day it would balloon.
‘I looked five months pregnant by the evening.’
Ms Ivory was referred for a colonoscopy, during which the scope couldn’t get through as a tumour was in the way.
While relieved to have an answer, she then had to undergo gruelling surgery.
Some of her lymph nodes, part of her small and large intestine, as well as her ileocecal valve, appendix and a section of her liver and gallbladder were removed.
Ms Ivory also has a primary tumour in her ileocecal valve – which separates the small and large intestine – that has spread to her lymph nodes.
And recent scans have shown more lesions in Ms Ivory’s liver, as well as her spine and rib.
It’s now a waiting game to see if they’ll grow large enough for her to undergo treatment.
Ms Ivory with her husband
Ms Ivory with her two children
There are two main types of neuroendocrine cancer: neuroendocrine tumours (NETs) and neuroendocrine carcinomas (NECs), which are fast growing. They are a group of cancers that start in the nerve and gland cells that make and release hormones.
The disease can develop in different parts of the body where there are hormone-releasing cells, such as the stomach, pancreas and lungs, and, as in Ms Ivory’s case, the bowel.
Symptoms include unexplained weight loss, tiredness, pain, diarrhoea, bloating, wind, heartburn, asthma-like symptoms, a flushing rash and a persistent cough.
Common misdiagnoses include irritable bowel syndrome, asthma, or menopause.
Neuroendocrine Cancer UK (NCUK) say that the disease affects 6,000 people a year in England and can take four years to be diagnosed. More than half of cases are diagnosed at an advanced stage.
Analysis by NCUK suggest rates of the disease rose by 371 per cent between 1995 and 2018, compared to 116 per cent for other cancers in the same period – apart from non-melanoma skin cancer.
It’s believed that Ms Ivory had the cancer for almost four-and-a-half years before being diagnosed in 2012; which only happened when she changed GPs.
Since then, she’s been ‘forced’ to give up work in 2022 as a result of having severe fatigue caused by the disease.
Ms Ivory celebrating her 38th birthday
But frustratingly, no treatment is available to her unless it grows.
She said: ‘I am constantly waiting for the tumours to grow big enough to get treatment that is appropriate for me.
‘It’s hard living with a slow growing, creeping cancer.
‘It’s devastating knowing I have [it] and we are not treating it.
‘A lot of other cancers have the kitchen sink of treatment thrown at them – but I’m forced to live with this disease rather than eradicate it.’
Having neuroendocrine cancer has totally derailed Ms Ivory’s life, and had huge repercussions for her family.
She said: ‘I have to limit what I do every day. Sometimes it may only be one thing. It can catch me unaware too.
‘I went to a spa recently with a group of girlfriends and we all went to the swimming pool but I didn’t put my head under water because if I get my hair wet it means having to wash my hair which will be exhausting for me.
A colonoscopy revealed a tumour in her bowel, which was removed
‘It’s these little things people take for granted.
‘My children have found it hard to accept – they understand it’s never going away and that at times it will grow and need treatment.’
Ms Ivory is just one story of many who are dealing with the devastating impacts of this cancer that often goes misdiagnosed or under the radar.
She’s working with NCUK on their new campaign for World Cancer Day.
It’s hoped their report will bring greater recognition and understanding of the complexities behind this cancer.
At least one person every 90 minutes gets their diagnosis confirmed, with half being done so at stage three or four.
It means limited treatment options, as well as an increase on the burden it carries.
Lisa Walker, CEO of NCUK, said: ‘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, it often requires people to live with it for many years.
‘That is why we need a conversation that reflects the reality of the condition.
‘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.
‘Patients and families describe these experiences as isolating and frightening, leaving them without support when they need it most.
‘This is unacceptable and requires urgent attention.
‘On this World Cancer Day, we hope our report goes some way to raising awareness and achieving earlier diagnosis, so that people receive timely treatment and support that can change lives.’
The charity is urging people to be aware of the signs, including unintentional weight loss, increasing fatigue, pain, diarrhoea, bloating, wind, heartburn, asthma-like symptoms, flushing and a persistent cough.