Joanna shares her mouth cancer story

Civil servant Joanna May, from Co Down, was diagnosed with pre-cancerous cells on her tongue – she shares her story to help highlight mouth cancer awareness month in November, and stresses the need for regular check-ups.joanna-may

She says:

“It all started about four years ago when I hurt my shoulder. I was prescribed anti-inflammatories but I took a severe allergic reaction and my tongue swelled up.

After that I began to notice a stinging sensation in my tongue. I mentioned it to my dentist who could see white spots. She wasn’t sure what it was and referred me to the Ulster Hospital in Dundonald.

Luckily, I quickly got an appointment and was red flagged so that I would be seen as a priority. I was in the system for nearly three years while I was monitored and had a number of biopsies done.


I was diagnosed with oral epithelial dysplasia, an abnormal development of cells which is a pre-cancerous state. It can affect smokers and people who drink alcohol or a combination of both, though I’ve never smoked and drank very little (I don’t drink any more). I’m just unlucky that my DNA has been kick-started into misbehaving.

More recently higher grade epithelial dysplasia was detected. The consultant decided it was time to perform a partial glossectomy, or the removal of part of the tongue. Even after the operation I wasn’t put on anti-inflammatories because of my allergic reaction.


The operation was the most stressful thing I have ever gone through in my life. Strangely I was more anxious about the anaesthetic than the worry of cancer. I’ve broken bones before, including my leg but I’ve never been under anaesthetic.1-joanna-may

I worried about the risks of the anaesthetic and of not waking up. I was so terrified. It was my mum who was worried about the cancer.

I had a small piece of my tongue removed. Despite my fears the operation went well and the surgeon was pleased, which makes me feel a lot more confident.

My check-ups have been good so far too. The only way it has affected me is that there are parts of my mouth that I can’t reach with my tongue now, but it is a small price to pay.


I’m really grateful to my dentist for listening to my concerns and she said I had done the right thing by seeking advice.

I’d tell everyone to make sure you go for your six monthly dental check-ups. If you have what look like mouth ulcers for more than three weeks get them looked at and if you have any worries about anything you think is unusual, see your doctor.”

You should see your doctor if you have:
  • an ulcer in your mouth that will not heal
  • pain or discomfort in the mouth that will not go away
  • symptoms that are unusual for you
  • symptoms that don’t go away

Your symptoms are unlikely to be cancer but it is important to get them checked by a doctor.