'The doctor told me I would lose my eye, part of my jaw, and most of my cheek' - Dublin woman shares mouth cancer story
When Mairead Lavelle, now 51, was 30, she was diagnosed with Gorlin syndrome, a condition that increases the risk of developing both cancerous and noncancerous tumours.
Over the following years had multiple basal cell carcinomas and keratocysts removed. This, she says, "had one advantage - I was a regular patient of Prof Gerry Kearns, maxillofacial consultant in St James's".
In October 2016, Mairead, from Dublin, was in St James for another routine operation, to remove a keratocyst, when she mentioned to Prof Kearns that she had a small lump in the roof of her mouth.
"He said he would take a look," she says, "and when I came to from the surgery he told me there was something there alright, and he had sent it off for biopsy and would see me next week."
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Mairead "thought nothing of it", she recalls. "I presumed it was another cyst." The following week, she was told that, in fact, it was a tumour. At that meeting, she was given "a valuable piece of advice. Prof Kearns said 'talk about your diagnosis but don't Google it.'" At that stage, she says, "I thought little of it. I thought it was just in the roof of my mouth."
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The following week, Mairead met Conor Barry, specialist in maxillofacial cancer, and was asked to undergo various eyesight tests. "I wondered why he was testing my eyes, but all he said at that meeting was that I would be out of work for 18 months to two years."
It was only a week later that Mairead, who had a job placing unemployed adults back into the workforce, learned that, because of the location of the tumour, she would lose her eye, part of her jaw and most of her cheek.
"He drip-fed me information," she says now, "and I'm glad. I couldn't have taken it in all at once. He was giving me time to adjust to what he told me. Even so, I was shocked, I really hadn't seen that coming. But from the start, my main concern was 'can you get the tumour? Can you save me?'
"I was 49; my father had died at 39, of cancer. That was going through my mind. I had also previously worked with children with cancer and I think I learned something from their attitude, how incredibly accepting they are."
Within a month of the first mention of that lump, Mairead had a 10-hour operation carried out by three surgeons. Over the coming weeks, she had three more operations.
"As well as the eye, jaw and cheek, I lost a lot of my teeth," she says. "I was discharged on December 23, and that was a shock. As long as I was in hospital, I hadn't dealt with the 'real' world. Now, I found that my sight really wasn't great. Without the eye, it was like looking at a flatscreen TV, everything was two dimensions.
"That took some getting used to. I can't tell the speed of an oncoming car, for example. I also lost my sense of smell, and I found that very hard. I was tube-fed while in St James', and over Christmas I had liquidised food."
In early January of 2017, after being fitted for a mask that would keep her completely still during her treatments, Mairead started six weeks of radiotherapy.
"That was much more difficult," she says. "I kept vomiting. They said it was because the location was so close to the brain. I lost three stone in five weeks. That was a bit of a silver lining," she laughs. "I'd been trying to lose weight for ages."
"But seriously, I hated the radiotherapy. I didn't mind the mask, but I hated the waiting, I hated the machine breaking down, and I hated the vomiting. On my last day, I went in with a box of chocolates for the staff at St Luke's, who were amazing, and they said 'you are one of the most stubborn patients we've ever had. You'd come in green and puking and we'd say 'would you like to take a day off?' and you'd say, 'no, I have to finish on March 1.' And I did," she says.
"By then I was so exhausted that I couldn't get out of bed at all. That is very unlike me. I live on my own so, although my family and friends are wonderful, there was no one to get me up. So I got a dog, a beagle. I deliberately got a dog that needs a lot of walking to get me up and out. I find walking very therapeutic. When you lie in bed too much, you think strange thoughts."
She also agreed to counselling, provided free by the National Council for the Blind of Ireland. "That was amazing," she says. "The service was over the phone. Every week the counsellor would ring me at the same time, and we'd chat. She gave me homework to do, Ted Talks to watch, she made a big difference."
There is no obvious answer as to why Mairead developed cancer. "It could be related to the Gorlin," she says, "but they don't really know. It isn't HPV-related, as many mouth cancers now are."
Once her treatment was finished - and the prognosis, thanks to the excellent margins achieved during surgery, given as "very good" - Mairead began reconstruction to her face, including a prosthetic eye, a bone from her hip put into her mouth, and new teeth attached to the bone. "Once I had teeth, I could eat solid food," she says. "That was great. No more mush."
After two years, she was told she could go back to work but didn't immediately as her mother, very sadly, was dying, and Mairead chose to spend time with her. She cannot now return to her previous job because she can't drive, and so instead is looking for part-time work. "I'd consider anything legal," she laughs. Frankly, any employer would be lucky to have such a resourceful, determined person.
How does she feel now? "I feel great now," she says. "I'm in a good headspace. I'm lucky I'm a positive person. I've had really bad days through this, of course, but I have always tried to find something, no matter how small, in every day, to be glad about. I call myself lucky, because I'm still here. And if telling my story means that one person pays attention to a lump or bump in their mouth, then I'm glad. My advice? Don't ignore anything, and go to where the expertise is. Go to a specialised unit, like the one in St James, and get yourself properly checked out."
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Mouth cancer facts: Things to look out for
⬤ Check your gums and inside the top and bottom lips.
⬤ Check inside the left and right cheeks.
⬤ Open mouth wide, look at the roof of your mouth and the tonsils at the back of your mouth.
⬤ Stick out your tongue and check it, top and both sides, right and left.
⬤ Lift your tongue to the roof of your mouth and use your finger to feel the floor of your mouth underneath and at each side of the tongue.
⬤ Check your lips and, finally, feel your neck for recent change.
Symptoms of mouth cancer:
⬤ A sore or ulcer in the mouth that does not heal.
⬤ White or red patches inside the mouth.
⬤ A lump in the mouth or neck.
⬤ Thickening or hardening of the cheek or tongue.
⬤ Difficulty chewing, swallowing or moving the tongue.
⬤ Numbness of the tongue or face.
⬤ Persistent sore throat or hoarseness.
⬤ Unexplained loose teeth.
Risk factors include:
⬤ Smoking cigarettes, cigars, pipes or marijuana.
⬤ Chewing smokeless tobacco, paan, gutka or quid.
⬤ Drinking alcohol and products containing alcohol.
⬤ Exposure to HPV (tonsils and throat).
⬤ Exposure to the sun (lip cancer).