Specialists say they are seeing a “very concerning” increase in the number of younger patients with mouth cancer – with no obvious explanation as to why. The BBC spoke to an oral surgery team about this lesser-known cancer, and two women who want to raise awareness of the devastating impact it can have.
It’s 09:30 GMT and the operating theatre is being prepared for Deborah Horsley.
She is about to have her eighth operation since finding an ulcer on her tongue in 2009.
“My GP treated it as thrush, but six months later it didn’t go, he tried it with something else, then I got sent for a biopsy,” said Ms Horsley.
“So that’s when I found out the first time [that I had cancer]; I was devastated.
“It’s now gone on to my gum, so I am having that removed today.”
Despite her pre-surgery nerves, Ms Horsley was keen to talk about the disease that has “taken over” her life.
“I want to highlight it, because a lot of people don’t know about mouth cancer,” she added.
“If I can help one person that would be good.”
Unfortunately, the exploratory operation discovered her cancer had spread to the bone, with Ms Horsley looking at extensive surgery, reconstruction of the lower jaw and possibly radiotherapy as well.
According to Cancer Research UK, about 880 people are diagnosed with mouth cancer in the East of England each year, and rates have increased by 26% across England in the past 10 years.
Richard James, an oral and maxillofacial surgeon at the Norfolk and Norwich University Hospital for almost two decades, said his patient numbers appeared unchanged, but he was seeing more and more people who did not have the usual risk factors of age, smoking and alcohol.
“We’ve seen an increasing number of younger patients every year,” he added.
“Going back over 20 years, we did see a number of patients in their teenage years, but that is relatively small number.
“Patients in their 20s, 30s and 40s – yes, we are seeing an increasing number, which is obviously very concerning.
“We are seeing a number of patients who don’t smoke and consume relatively small amounts of alcohol, but the exact reason has never really been determined.
“Maybe there could be some genetic factors, there could be a whole host of reasons.
“Certainly not being able to see dentists, not being able to see primary care could be an issue for a lot of patients and certainly its something that we would like to see corrected.
“The earlier we detect and treat mouth cancer, the better.”
Registrar Sarah-Jane Miles was assisting Mr James in theatre, a year after she was diagnosed with tongue cancer.
Her treatment was successful and she was able to get back to her training.
“I feel incredibly fortunate – I am working and for a long time I was concerned that may not be a possibility,” she said.
“I think it gave me a different way of looking at things, from a patient perspective.
“Obviously I have the medical training, but it’s different when you are going through things yourself and the challenges you have to overcome to get back to everyday life.”
Barbara Fountain, of Norwich, is keen to ensure support is there for people with mouth cancer, particularly for younger patients.
She was 32 when she was diagnosed with tongue cancer by Mr James on New Year’s Eve 2018, having been referred by her dentist.
“At that moment, everything slowed down,” she said.
“I looked at my husband’s face and it was like shattered glass, and I could see his world completely turned upside down.
“It was only when I met my Macmillan nurse, who touched my arm, that I realised ‘oh this is actually happening to me’.”
She made a good recovery from a 12-hour operation to remove a quarter of her tongue, which was rebuilt using part of her arm.
Five years on from her diagnosis, and she regards herself as “super lucky”.
She set up Young Tongues, initially as a network to help her connect with people like herself.
Mouth cancer – the common symptoms
- Red and white patches inside the mouth
- Ulcers or sores that do not heal within 14 days
- A lump in the neck
- Pain or bleeding in the mouth
- Difficulty swallowing
- Persistent pain in the throat or ear
- Speech problems
It now links patients around the world and, she hopes, could inspire targeted research.
“Having tongue cancer was an incredibly isolating experience for me, because I didn’t have people to relate to,” she said.
“When I found my first three or four people on Instagram I was really excited, but suddenly we were 100, then we were 500.
“I saw there was a real need for age-appropriate support and to make sure as a young person you feel heard.
“It’s really important that as a young person if you have a mouth ulcer or a bump and it’s not healing after three weeks that you ask [your GP], and ask again.
“We need money to find out why this increase is happening, and what’s driving it so we don’t end up with a tongue cancer crisis in 10 or 20 years,” she added.