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.
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.
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.
“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.
“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.”
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.
Maggie Senior January 14, 2017
I was diagnosed with stage 2 tongue cancer as Charlie was in July 2016, my dentist was brilliant and took a pic of the ulcer with his mobile and emailed it to the dental hospital! I had a biopsy followed by surgery 10 hours of it apparently- recontruction of my tongue using skin and arteries from my forearm! I also had 6 x 5 days week of radiotherapy. Speech therapy after too. I am a PE teacher so rely on my voice. I am still here so 10/10 for my dentist and the NHS who are all brilliant- I now visit my dentist every 3 months( my choice) after being discharged from the dental hospital. I had regular checkups for 5+ years. Go and get it checked out if you get anything suspiscious in your mouth. Good luck to Charlie and those still recovering
Jan November 26, 2016
Please go to the dentist regularly. Despite what is said your dentist is the best person to diagnose this. My husband saw many cases during his career as a dentist, on the lips and in he mouth. Anything in the mouth that doesn’t heal within a few weeks should be checked,
Liz November 26, 2016
I had never heard of mouth cancer until my father in law was diagnosed in December 2014 & was misdiagnosed to start with & by the time he went in for surgery the tumour of his lip had spread to his jaw & further into his mouth he had to have a new jaw built from a piece of leg bone & skin graphs from his thigh to build him a new chin, sadly he couldnt eat & was fed by a tube he lived for 5 months if they had caught it sooner the outcome may have been different.more awareness is so important.
Sharon wolton November 26, 2016
Thank you for sharing your story Charlie. I lost my sister to mouth cancer just over 10years ago. Your story is inspirational .
June Raper November 26, 2016
Difficult to understand why, in this day of knowledge concerning medicine, Dr.s are not trained in ALL aspects of medicine..the mouth is an important part of the body! Unbelievable!
Marcia November 26, 2016
Charlie, I too was diagnosed this year, 20th Oct, also stage II. I had my surgery on 7th Nov so I am currently at home recovering. Speech is better than what I thought. Still on liquid diet, getting sick of soup! After my neck dissection and 55 lymph nodes being checked I need no further treatment, that’s a relief. I will have appointments monthly from now on.
Good luck for the future, it sounds like we are at very similar stages of our journey. Xxxx
Ian Hynes November 26, 2016
Charlie, great piece, so little out there on mouth cancer. I survived Stage 4 only by insisting that something was wrong to the experts more than 12 months after symptoms. Whilst we never looked back, the one question my wife asked of my life saving consultant was whether treatment would have been so radical had it been spotted earlier, answer “NO”. Like you, I speak for my living, it has been life altering but in a positive way and I’m still here! I’ll take a look at your blog.
Leanne Ellison November 26, 2016
I was diagnosed with tongue cancer (SCC) 5 years ago after not being referred quickly enough with a white mark in my tongue. I had 1/3 of my tongue removed and lymph nodes on the left side of my neck. I’m all clear after 5 years but I see my fantastic maxillofacial consultant every 3 months, who keeps a close eye on me.
I’m glad you are another successful case as this type of oral cancer is very very worrying especially as it’s on the rise.
Good luck with the rest of your recovery.
Moira Millar November 26, 2016
Same thing happens to me Charlie I had Radiotherapy the lot I thought this was my story I was reading this 16 year ago was HORRENDOUS but I am still here .
Jane Whitehouse November 26, 2016
I think you’re an absolute inspiration! Thank you for sharing your story and I hope it’s all good from now on.