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WHEN Emma Byron was told she had only a few months to live, she went into shock.
The 45-year-old had tried and failed to get a GP appointment for a mouth ulcer for three months straight – and now, it was too late.
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The teacher, who says she was left “crying in frustration”, developed the sore on her tongue in May 2023.
She initially thought it was due to a condition she’d been diagnosed with years earlier, called lichen planus.
The common, non-infectious itchy rash usually takes a few months to years to treat. But this time, her usual steroid spray wasn’t working to clear it.
When the mouth sore didn’t go away for a month, Emma repeatedly tried to book an appointment with her GP, but the surgery’s online triage system did not deem her case urgent.
Emma, from Rochester, Kent, tells Sun Health: “I tried to get an appointment with my doctor, but it was rejected as non-urgent.
“I put in several e-consultations and phone calls, but simply could not get an appointment.
“By the end of July, I was continually ringing them.
“I had classic mouth cancer symptoms – an ulcer that does not heal, red and white patches, and pain.
“The biggest giveaway was that after two months, it was not healing, and the pain was actually getting worse.
“Finally, my GP called [in July] and told me to contact the hospital, which I did.
“I pleaded for an appointment, but was told the earliest I could be seen was the end of September.
“At that point, I cried out of frustration and desperation.”
Emma was squeezed in for an appointment at the end of August and was given a biopsy in early September.
She says: “I then had the results two weeks later. My mouth ulcer was cancerous.”
She had stage 1 oral squamous cell carcinoma (OSCC), a type of mouth cancer that develops in the squamous cells lining the mouth.
Emma, who has been with her partner Jorge Quintero, 58, a driver in the transport sector, for 10 years, was admitted to the Queen Victoria Hospital in East Grinstead, West Sussex.
Part of her tongue was removed, alongside 42 lymph nodes, but serious complications left her in intensive care for weeks.
She had a chyle leak, a rare complication of head and neck surgery in which fluid from lymphatic vessels leaks into the body’s cavities after the lymphatic system is damaged.
It was such a shock. It was just not what I was expecting. I felt like a train had hit me
Emma Byron
Emma says: “These leaks can lead to serious complications like pneumonia and sepsis if not managed properly.
“I had to be transferred to Guy’s Hospital in London to have surgery to stop the leak, as mine was life-threatening.”
Afterwards, with her cancer apparently in remission, Emma went back to work.
However, in May last year, she found a lump in her neck, and that June, she was diagnosed with stage 3 oral cavity sarcoma cancer.
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“It was such a shock,” Emma says. “It was just not what I was expecting. I felt like a train had hit me.
“I was told that they had found something else on my scan and that my cancer was horribly aggressive.
“They said they were going to have to remove half of my tongue and part of my jaw, which was one of my biggest fears.
“I could either accept the surgery or I could opt for chemotherapy to prolong my life.
“It would impact my speech, my ability to eat, my appearance and the nerves in my arm, as my tongue would be reconstructed with skin from my arm.
“I knew this was likely to end my teaching career.
“I had to make the decision that evening so that they could organise the surgery.”
‘INTRUSIVE’ SURGERY
Emma decided to have the operation two days later, again at the Queen Victoria Hospital.
“It was intrusive,” she says. “I had 40 per cent of my tongue removed and replaced by the skin on my arm.
“[I had] more lymph nodes and part of my jaw removed and replaced with a titanium plate.
“I also needed a tracheotomy (a procedure to create a hole in my neck) to enable me to breathe afterwards.
“I was in intensive care for two-and-a-half weeks and then was moved to another ward on the head and neck unit.
“During this time, I had a feeding tube fitted into my stomach, which I still have today.”
Despite everything she had been through, Emma then got the devastating confirmation that her condition was now incurable stage 4 head and neck cancer.
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“It had metastasised to my lymph nodes and my lungs and, as I would later discover, my leg,” says Emma.
“My mum, Julie, came to the appointment when I received the news that it was incurable.
“I’m her only daughter, so the worst bit was for her really. I really felt for her.
“I think that must be a parent’s worst nightmare. When they gave me the diagnosis, I turned to her and said, ‘I’m sorry’. I was quite calm really. Then I went into shock.”
Her doctor said patients normally live between a year and 18 months after such a diagnosis.
“The average life expectancy for my type of head and neck cancer is 12 to 18 months, which is grim. But I intend to live longer than that,” Emma says.
Head and neck cancer – what you need to know
HEAD and neck cancers encompass a group of cancers that originate in the mouth, throat, voice box (larynx), sinuses, and salivary glands.
They share common risk factors and often present with similar symptoms.
As with any cancer, early detection is crucial for successful treatment.
More than 90 per cent of head and neck cancers are squamous cell carcinomas, arising from the flat, thin cells that line structures like the mouth and nose.
Key risk factors for all types include:
- Tobacco use (smoking and smokeless)
- Excessive alcohol consumption
- Infection with high-risk human papillomavirus (HPV), particularly HPV-16
- Prolonged sun exposure (for lip and skin cancers)
- Epstein-Barr virus (for nasopharyngeal cancer)
Avoiding smoking and excessive drinking can help lower your chances.
The HPV vaccine offers protection against HPV-related head and neck cancers. It is offered to school children in year eight.
Regular dental check-ups can also aid in early detection of oral lesions.
Symptoms vary depending on the cancer’s location but often include:
- Non-healing sores in the mouth (or an ulcer that won’t go away after three weeks)
- Persistent sore throat
- A lump in the neck
- Difficulty swallowing
- Changes in voice (hoarseness)
- Unexplained weight loss
Treatment options depend on the cancer’s stage and location but can include surgery, radiation therapy, chemotherapy, targeted therapy and immunotherapy.
She is now urging people to push their GP harder if they have signs of head and neck cancer.
These include an ulcer that doesn’t go away after three weeks, red or white patches in the mouth, a lump in the neck or around the mouth, a sore throat or tongue, problems swallowing and hoarseness.
“An early diagnosis is absolutely essential with this type of cancer, because it’s so aggressive,” says Emma.
“So if you’ve got sore in your mouth and it doesn’t go after a couple of weeks, go to the doctor.
“That’s the same advice if you have a continuous sore throat – get it checked out.
“And the same with any lumps or soreness in your neck that you haven’t noticed before.
“Please, just go and see your doctor. Don’t put it off.”
FINDING PURPOSE
Emma has now had five surgeries, including those to save her life from complications, and a raft of radio and chemotherapy, which landed her in hospital twice due to side effects.
Despite all this, she has committed to living her life as fully as possible.
Her speech has been affected, but she’d like to return to part-time work and do what she can to support Oracle Head & Neck Cancer UK.
Emma says: “There are certain sounds that are difficult to make and I have a lispy sound when I speak.
“I struggle to raise my voice, which, as a teacher, is a problem because you need to be able to project to a class.
“The food I eat has also changed. I now have lots of mash, stews, soups and pasta – basically foods with lots of sauce.
“I can eat bread or steak if I want – but honestly, it’s so much effort for not enough enjoyment that I don’t bother.
“Also, my taste buds have changed. Strong flavours work best – for example, fish, curry or garlic.”
This type of cancer has only just had its first breakthrough in decades, but unfortunately that was too late to help me
Emma Byron
She supports her health through nutritious meals and tries to stay as fit and stress-free as possible.
Emma emphasises that this won’t cure her, but it will help her body fight the cancer.
She fills her time with fundraising, recently returning from a trip to Slovenia with Jorge, where she flew down seven zip lines over Lake Bled to raise money for Queen Victoria Head and Neck Unit and Maidstone Oncology.
“The challenge went really well, though it was tough because I have a tumour in my leg,” Emma says.
“I want to raise money because I can honestly say that every single doctor, nurse, dietitian, surgeon, physiotherapist and cleaner treated me with such kindness and warmth and made me feel safe at a difficult time in my life.
“Everyone went above and beyond and I am so grateful to every single person who helped me.”
She adds: “I also want to raise awareness about this devastating condition.
“Head and neck cancer is on the increase, and there really is not a great deal of research into this area.
“There has been a 47 per cent rise in cases between 2013 and 2020 and while mortality is declining in most other cancers, it’s increasing in head and neck.
“This type of cancer has only just had its first breakthrough in decades, but unfortunately, that was too late to help me.”
Emma’s mum Julie has also been raising money where she works at Chatham Marks & Spencer.
Emma says: “I have been really lucky to have had such amazing love and support from my mum and partner Jorge and an amazing group of friends, without whom, I would not have got to this point. I’m so grateful to them.”
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