Mouth cancer in young people: Charlotte’s story

As part of November’s Mouth Cancer Action Month, Charlotte Webster, who lives in Peters field, Hampshire, tells us her experience of mouth cancer.  Charlotte hopes her story will raise awareness of the disease and encourage more people to check themselves for signs of mouth cancer

At 26 years old, Charlotte was given the life-changing news that she had mouth cancer. The ex-cabin crew member now training to be a midwife from Hampshire does not fit the typical mouth cancer patient – being a young woman who’s a non-smoker and an active gym-goer.  But Charlotte represents a growing number of younger people who are being diagnosed with mouth cancer and also is just one of thousands of people who have been diagnosed with mouth cancer and had to face their treatments with the added struggle of COVID regulations and isolation.

Ahead of November’s Mouth Cancer Action Month, Charlotte talks about her own journey, opens up about what led her to getting checked out, the disbelief of a diagnosis, and reveals how mouth cancer continues to change her life. 

“I had some ulcers for about three to four years before I had my [mouth cancer] operation, but I wasn’t worried about them at first because I do get run down and I was jet-lagged and flying all the time with my job and often ulcers are sign of celiac disease, which I have, so I put it down to that. They came and went but always in the same area, they never fully went but they used to flare up like if I was run down.

“About a year before I had my operation I went to the dentist and they said ‘well, I don’t really know what it is, might be because your teeth are rubbing so we would advise maybe getting your teeth straightened and have your wisdom teeth taken out’. So, I did that. I paid for braces, got my wisdom tooth taken out and had really great teeth, but still had the ulcers.”

After these initial early signs of mouth cancer were missed by her dentist and other professionals, Charlotte went on to have a biopsy in April 2021 after her ulcers got significantly worse.

“They felt like ulcers do, but just a bigger patch and they started to turn white, and they had like red around them as well, so they looked quite like inflamed. I thought maybe it was a bit of an infection or something. My mum kept telling me to go and get it checked so I went to my doctor in January and he said he wanted to send me for a biopsy which I got around April.

“I went in for the results, and he said, ‘have you got anyone with you today?’ And I was thinking yeah my other half is in the car with the dog. And he said, ‘Do you want to bring him in?’ and I just looked him and I said ‘it’s not good is it?’ and he was like ‘no, it’s not. I’m really sorry, you’ve got cancer’ and I was like, ‘What do you mean? Surely not.’ and I think I almost laughed. It was such a shock because I’m otherwise a healthy person.”

Charlotte also told us about her time in intensive care.

“It was hard, and I remember I couldn’t see mum which was really hard too. I couldn’t wait to get out of hospital, as amazing as the staff were, my goal was ‘right, just get home’. To get discharged you need to show the staff you can drink, swallow, keep stuff down, you know, all the rest of it. So, they listen to your swallow for a while and then they’ll test it.

“My tracheostomy was fitted for seven days so my body hadn’t swallowed or breathed through my mouth in so long that often your muscles take a while to get back to that. And I had to have my tracheostomy taken out, and I remember the first time they tried to take it out. They covered this hole so I could then breathe through here and it wouldn’t, it just couldn’t, I think my body wasn’t ready because it was like being suffocated because I couldn’t breathe through my mouth. it was so like, it’s just like I had a mouth full of like straw or hay. It was just so hard, so husky, so stuck. And I remember the panic, I was like no, I can’t, so they tried again the next day and then every day it just got a bit better and better.”

After getting home from the hospital Charlotte continued to get support from different professionals including counsellors, dieticians, and speech therapists, but also emphasised how important she found the support she got on social media from other mouth cancer sufferers.

“It’s a different kind of like support that you get because you know that they feel the same, like one guy said to me ‘I saw your video of you sipping the water for the first time. I laughed my head off because I felt exactly the same!’ and before my operation there was one lady who said she would chat to me, but I chose to speak to her after my op because I just wanted to, not really know much, I just wanted to get it done and out the way. But afterwards I messaged her about one of the things I was most worried about – I asked her to send me a voice note because I wanted to know that I wasn’t going to sound like you couldn’t understand me that was the only thing I was worried about. Because I know unfortunately it does happen some people, but she reassured me.”

Charlotte also shared some thoughts about mouth cancer in young people.

“There is a stigma against mouth cancer, I was told ‘oh, you’re too young’, ‘God it won’t be that’, ‘no it won’t be that’, and it does happen. It really can happen to anyone not just smokers because that’s such a stigma – it really annoys me. People think you have to be like a really old man that smokes 50 a day, but you don’t. It took this tiny little poster in the clinic for me to, to be like, ‘oh my God, that’s mouth cancer’ and by then it was too late anyway.”

Learn more about mouth cancer by visiting www.mouthcancer.org.