Our daughter Clare died aged just 23 from a disease we knew nothing about – it all started with a white ulcer
CLARE Jones was an “amazing daughter”, described as always smiling and ready to help others.
But four years after finding a small ulcer between her tongue and gum, Clare sadly passed away from mouth cancer at the age of just 23.
Now, her parents Pat and Colin Jones, from Shropshire, are on a mission to raise as much awareness as they can about the disease.
Mouth cancer is the sixth most common cancer in the UK, but experts say it’s a growing concern, with over 8,700 new cases diagnosed annually.
According to the Mouth Cancer Foundation, it’s estimated one person dies from mouth cancer every three hours.
Pat, 71, and retired, says: “About 25 per cent of mouth cancer cases are not associated with any known risk factor – hence the need for vigilance.”
Their daughter Clare was 19 and a student at Loughborough University when she first noticed the white ulcer in her mouth.
After nine months of both doctors and dentist appointments, in February 2003, a biopsy confirmed it to be mouth cancer.
“It was terrible, our world stopped,” Pat says. “She was so brave and never complained once.
“But no clear cause was given for the cancer.”
After her diagnosis, Clare had two operations – the first to remove part of her tongue, then a bigger 10-hour surgery to remove half of it, which included reconstruction with skin, blood and nerves from her arm.
Five months later, Clare joined the Mouth Cancer Foundation to find out how others coped.
In Clare’s words: “I would like to discuss my feelings with people who have experienced the same operation as myself.”
In June 2005, Clare graduated from Loughborough with a first in Information Management and Business Studies and got a job at the Swansea NHS Trust.
But within 12 months, it was found Clare had secondary bone cancer.
She was forced to have an operation on her back, a rib removed, and then extensive radiotherapy and intensive chemotherapy.
Clare finished treatment and was looking forward to a better 2007.
But an MRI scan showed no change in the size of her cancer, which eventually spread to her brain.
In 2007, four years after her first diagnosis and nine months after the cancer returned, Clare passed away peacefully with her family by her side.
Pat says: “Clare was an amazing daughter, always smiling, always kind, and always ready to help others.
“She was the best little sister to her two older brothers.
“We hadn’t heard about mouth cancers or head and neck cancers before Clare’s diagnosis.
“We’re pleased to see more dentists are looking for signs of mouth cancer at routine check-ups than we noticed when Clare was diagnosed.
“All health professionals should be more vigilant, especially in young adults.
“Also, if in doubt, get checked out.”
Mouth cancer symptoms
Neil Sikka, director of dentistry at Bupa Dental Care, revealed the signs and symptoms of mouth cancer to look out for…
What is the first sign of mouth cancer?
The earliest signs of mouth cancer can include an ulcer that won’t heal or red and white patches that start to look different in appearance.
What are the main symptoms people should look out for?
Other symptoms may include difficulty in swallowing, which lasts for a few weeks, red or white patches in the mouth, teeth becoming loose for any unexplained reason, or unexplained bleeding or numbness in the mouth.
It’s important to remember that all these signs and symptoms can also have a normal explanation, but if they concern you or are persistent then you should visit your dentist for a professional check-up.
Your dentist will look for the common signs and symptoms during your appointment, and all dentists also include an oral cancer screening as part of your usual check-up.
This includes examining the head and neck, and then inside the mouth the cheeks, lips, tongue (including under the tongue), and back of the throat in addition to the gums and teeth. In some instances, you may also receive an X-ray, which will give your dentist a clear view of possible changes to structures.
Who is at risk of mouth cancer?
Generally, alcohol and tobacco use are considered the highest risk for developing mouth cancer.
There is also evidence to suggest that infection with HPV (human papillomavirus) can be a precursor to oral cancer.
Another attributing factor is poor oral health – if there are broken or jagged teeth then they can cause ulcers in the mouth, which may become cancerous if they are unable to heal.
Meanwhile, over exposure to the sun can increase the risk of lip cancer, so patients should remain vigilant during the summer.
How is it treated?
If your dentist sees anything that requires further investigation, they will refer you to a mouth cancer specialist for further tests in hospital.
If mouth cancer is diagnosed, the treatment provided will depend on many factors including type, size, and position of the cancer.
Your hospital team will also consider your general health and fitness
together with any potential side effects of treatment.
How common is mouth cancer?
According to Alistair Fry, consultant oral and maxillofacial surgeon at Cromwell Hospital in London, mouth cancer, which is the most common type of head and neck cancer, is on the rise, with around 8,000 people in the UK diagnosed per year.
This has reportedly increased by over 30 per cent in the last 10 years.
He says: “Generally, people haven’t heard much about mouth cancer, which is perhaps one of the reasons why the diagnosis can be missed and is often late.
“Sometimes patients can incorrectly attribute problems in the mouth to dental infections.
“It’s important to get checked if you have a lump, ulcer or patch in the mouth that lasts longer than two weeks.”
Early mouth cancers (stage 1) have around a 90 per cent cure rate, and treatments are usually straightforward with little impact.
For late presentation or more advanced stages, this falls to just under 50 per cent and is more likely to impact quality of life, including speech, swallow, taste, and appearance.
“Early diagnosis is crucial,” says Fry.