Talking about mouth cancer is important

Charlie sticking her tongue out. Charlie sticking her tongue out.

New statistics published today show that the rates of mouth cancer in the UK have jumped by 68 per cent over the last 20 years.

The figures have been released during Mouth Cancer Action Month, a campaign that aims to increase awareness of the disease, how it can be prevented and the importance of diagnosing it early.

Because like most types of cancer, the earlier mouth cancer is diagnosed, the better the patient’s chances of surviving.

Some of the signs and symptoms of mouth cancer include a lump on your lip or in your mouth that won’t go away, a white patch in your mouth, or an ulcer.

Charlie’s story

For 47-year-old Charlie, it was an ulcer on her tongue that wouldn’t go away.

She first noticed it in May of this year.

To begin with, she didn’t take much notice. But when it started causing her pain, and still hadn’t healed by July, she started to worry.

Charlie explains, “I went to my dentist to get it looked at. They took some x-rays and told me they thought the pain was being caused by a wisdom tooth.

“So they referred me to an oral and maxillofacial surgeon to have the tooth removed. They weren’t worried about the ulcer at all.”

But Charlie wasn’t convinced. When the ulcer still hadn’t cleared a few weeks later, and was still causing pain, she sought a second opinion.

Again she was told it was nothing to worry about. A third dentist told her the same thing.

Charlie was diagnosed with stage II mouth cancer this year.

In September, almost 5 months after she had developed the ulcer, it was time for Charlie to see the surgeon to have her wisdom tooth out.

“When I sat down he prodded my gum and asked if it was sore. I said no, my gum wasn’t causing any pain, it was my tongue”, she recalls.

“He seemed a bit confused as to why I’d been sent to have my wisdom tooth out when it was my tongue that was sore.”

The surgeon then noticed Charlie’s ulcer.

When she explained how long it had been there for, he immediately took a biopsy and sent it to be tested.

The results confirmed Charlie’s suspicions that something else was wrong, that it was more than just an ulcer.

She was diagnosed with stage II oral cancer.

For Charlie, whose career and hobbies revolve around speaking, it was devastating news.

“I work in communications. I do voice-overs for radio & business audio, I’ve taught speech and I sing in two bands”, she describes.

“My whole world, my identity is focused on being able to speak and communicate. To be told I had mouth cancer – and might not be able to speak for months – was a real blow.”

Knowledge and awareness are key

According to Mr Satheesh Prabhu, Charlie’s oral and maxillofacial surgeon who’s based at Oxford University Hospital, it’s not unusual for it to take a long time to diagnose mouth cancer.

“The average time between a patient experiencing symptoms and getting them checked is about 6 to 8 weeks.

“And then, when patients do get them checked, healthcare professionals aren’t always sure what to do or what the problem is.”

Prabhu believes part of the reason for this delay is a lack of public awareness around mouth cancer.

Mr Satheesh Prabhu, Charlie’s oral and maxillofacial surgeon.

“Other cancers, like breast and testicular cancer, have champions and celebrities who raise awareness of the disease. But we don’t have that for mouth cancer.”

“We need to do more to make the public aware of the signs and symptoms of this type of cancer. They need know what to look out for and the importance of getting things checked.”

But Prabhu is quick to point out it’s not just down to the public.

He thinks that we also need to do more to increase knowledge of mouth cancer among dentists, doctors, nurses and hygienists.

For dentists, it’s mainly about offering them continued support and training.

“Dentists know a lot about the mouth, but see few, if any, cases of mouth cancer during their careers, so it’s important to offer them continued support.

“Resources like the oral cancer toolkit can help give them confidence in spotting the early warning signs of mouth cancer.”

GPs might also need more support in recognising possible warning signs of mouth cancer because learning about the mouth isn’t a core part of medical training.

Prabhu thinks that needs to change.

“Medical students should be taught by an oral and maxillofacial surgeon about the mouth and diseases related to it as part of their training.

“Because if dentists don’t see many cases of oral cancer during their career, doctors see even fewer.”

Earlier diagnosis means better chances of surviving

Increasing awareness around mouth cancer could lead to more doctors diagnosing more patients in the early stages, which would help more people survive.

“Patients diagnosed with early stage mouth cancer have a 70 to 90 per cent chance of surviving for 5 years or more,” says Prabhu.

“But survival drops to less than 20 per cent for those diagnosed with late stage disease.”

“That’s why we need to make the public and healthcare professionals more aware of the signs and symptoms of this disease – so that it can be caught early when the chances of surviving are better.”

Charlie’s cancer was diagnosed as early stage.

“I was lucky because I was diagnosed as stage II, which is still early. It meant that my chances of surviving were high.”

Being diagnosed at an early stage can also mean less severe treatment.

The main treatment for mouth cancer is surgery, with the amount of tongue that needs removing depending heavily on the stage.

Prabhu explains, “If the disease is diagnosed at a late stage, more of the tongue will need to be removed than if it was diagnosed early.”

A late-stage diagnosis also increases the likelihood of patients needing additional chemotherapy or radiotherapy after surgery which can have difficult, long-term side effects, reducing survivors’ quality of life.

Charlie was told she would need surgery and possibly radiotherapy.

Charlie and her son Tyler

“Mr Prabhu told he would have to remove up to 50 per cent of my tongue, which would be replaced with skin from my arm.

“But they wouldn’t know if I needed any other treatment until after they had done the operation.”

She was also told that because of the surgery and the skin graft from her arm, she would have to learn how to talk again.

“I was scared. They said I probably wouldn’t be able to talk properly for months, and that I’d have to use a blackboard to communicate in the early stages of recovery”

“And I was told I’d have to work with a speech therapist to learn how to swallow and speak again.”

The future looks bright

But after the operation, Charlie received a pleasant surprise.

“When I woke up, I could speak! It was a complete shock.

“I’d been so convinced that I’d not be able to talk to people… I just couldn’t believe it”

“My son, Tyler who is 12-years-old, was so relieved. He thought he’d be talking to his mum using a blackboard!”

“There are some things I can’t say very well at the moment; “s” sounds are a particular problem, so I’m working on these with a speech therapist. But as far as I’m concerned, if people can understand me, that’s the main thing.”

Charlie puts her successful treatment and good outlook down to the fact that, despite a small delay, she was diagnosed at an early stage.

“I would encourage everyone to get anything unusual, or any persistent problems they’re having with their mouth or any other part of their body checked as soon as possible”, Charlie explains.

“It could save your life”.

For Charlie, the future looks bright.

At the moment she’s recovering from her operation. But she’s also working on making a video and writing a blog about her experience to increase awareness around mouth cancer.

She’d like to give something back and help others have a positive outcome like her.

“Something bad happened to me.

“But I’ve got my head around it with the love and support of Tyler my family and my friends.

“I’m on a new, unexpected mental and physical journey that will take some getting used to. And it’s resulted in a new me.

“But you know what? I really like the new me.”

Áine

Update May 2017: Sadly, Charlie passed away this May. We were so grateful to her for her help in raising awareness of oral cancer and would like to thank her and her family for their support in sharing her story through this blog post.