A Cornwall mother is urging people not to ignore persistent nasal symptoms after being diagnosed with a rare form of cancer that was eroding the base of her skull.
Claire Barbery, 51, from Newquay, nearly cancelled the hospital appointment that led to her diagnosis of olfactory neuroblastoma – a rare cancer that develops in the upper part of the nasal cavity.
“I very nearly cancelled that appointment because I didn’t want to be wasting NHS time,” said Claire.
“There’s nothing wrong, I thought. But looking back, that decision could have cost me my life.”
Claire has now partnered with UK charity – the Get A-Head Charitable Trust to share her incredible story and raise awareness this World Head and Neck Cancer Day (July 27).
She’s hoping to encourage others to seek medical advice for persistent symptoms.
Claire’s journey began in January 2023 when she experienced a continuous blockage in one side of her nose. Working in a care home, she initially attributed it to the effects of COVID testing.
“I started snoring, which I’d never done before. I was waking myself up, breathing through my mouth rather than my nose,” Claire explained.
“I just left it and thought it was something to do with having had COVID the month before.”
After using a steroid spray without improvement, Claire decided to seek medical help and was referred to an ENT specialist.
Following scans and a biopsy, doctors delivered the shocking news – she had a 5cm tumour that had already begun eroding bone at the base of her skull.
In January 2024, Claire underwent complex surgery at the Queen Elizabeth Hospital in Birmingham performed by consultant surgeon Shahz Ahmed, who specialises in skull base procedures and is also a trustee of the Get A-Head Charitable Trust.
The procedure was filmed as part of the Channel 5 documentary ‘Surgeons: A Matter of Life or Death’ and the episode featured on television earlier this year.
Mr Ahmed said: “Claire had a very rare form of cancer that needed to be removed. Untreated, it could have metastasized and spread into the neck and the rest of the body.
“It had already gone through the skull base into the base of the brain and if left, it would have become harder and harder to treat.”
The delicate operation involved removing the tumour, along with Claire’s olfactory bulbs – meaning she has permanently lost her sense of smell – and reconstructing the area between her nose and brain.
Talking about the risky operation, Mr Ahmed said: “The key worries were operating between the left and the right eye.
“The main blood supply to the brain is in very close proximity so the risk of seizures, stroke, injury to the brain and loss of life, were all very real. Thankfully, the surgery was a huge success and Claire suffered no complications.”
Following surgery, Claire underwent six weeks of chemotherapy and radiotherapy and is now under regular review with her medical team.
She is gradually returning to work and since treatment finished has been enjoying holidays with her husband Gary as well as spending more time with daughters Lowenna, 27, and Keizha, 25.
Although there is no strong or consistent evidence linking HPV (human papillomavirus) to the pathogenesis of olfactory neuroblastoma, Claire believes there could be a chance her cancer is linked, having previously had pre-cancerous cells removed due to the virus.
She advocates strongly for regular smear tests in women and HPV vaccination in boys and girls – a cause also championed by Get A-Head.
Her message to others is clear: “If you know your body, then you’ve got to push. If there’s something wrong, don’t ignore it.”
The Get A-Head Charitable Trust supports people affected by head and neck cancer through research, education and practical support.
World Head and Neck Cancer Day on 27 July aims to raise awareness of symptoms that should never be ignored, including persistent hoarseness, difficulty swallowing, unusual lumps in the neck, persistent sore throat or earache, persistent nasal congestion or nosebleeds especially if occurring on one side and unexplained weight loss.
Health professionals advise that if you experience any of these symptoms for more than three weeks, you should consult your doctor.
