What is oral cancer?

It was December 2021 when Jen Mackay first went to see her dentist with a sore patch on her tongue. Her dentist smoothed off one of her teeth twice in 2 weeks and the problem seemed to resolve itself.

But, 6 months later in May 2022, Jen developed an ulcer on her tongue that wouldn't heal.

"My dentist suggested a crown and my GP prescribed antibiotics, but the ulcer got worse. It became so painful that I was struggling to eat. I decided to get a second opinion from another doctor but was told I was too young for it to be anything serious."

Still seeing no improvement and the ulcer getting bigger and more painful each day, Jen saw an orthodontist who immediately referred her to a specialist.

"He looked in my mouth and then at my wrist. Within seconds he said ‘I could be wrong, but I don't think I am. I think you have a cancer called squamous cell carcinoma (SCC)'. I didn't know it at the time, but he was looking at my wrist as that's usually where they take skin to rebuild your tongue from, so he was already thinking about surgery."

Jen's diagnosis was confirmed, and she underwent an 11-hour surgery to remove the tumour and with it, half of her tongue, which was rebuilt using her thigh. Because the cancer was aggressive and had spread to her lymph nodes, 7 weeks after surgery Jen began a gruelling course of chemotherapy and radiotherapy treatment.

"I developed ulcers and blisters down my throat and in my mouth. By day 6 I couldn't eat and soon I couldn't drink or speak. I had a feeding tube in my stomach, and I had to communicate with my partner Chris and my family on text message. It was horrendous. The strange thing was just weeks earlier I'd never even heard of oral cancer."

Oral or mouth cancers are those that affect the tongue, gum or jawbone.¹

Oral, head and neck cancers represent up to 4% of all cancers diagnosed in Australia and can be deadly if not found and treated early.

While older, male smokers were once thought more at risk, over the past 30 years there has been a shocking 385% increase in young women being diagnosed with tongue cancer.² This has sparked concern among experts and calls for oral cancers to be front of mind for people presenting to their dentists and GPs with symptoms.³

Not everyone with oral cancer will experience any symptoms, making early detection difficult.

Some signs and symptoms can include:

• a lump in your neck
• loose teeth
• swelling or a sore on your lip that won't heal
• difficult or painful swallowing
• changes in speech
• bleeding or numbness in the mouth
• white or red patches on the mouth, tongue or gums
• unexplained weight loss.⁴

Bupa Executive Clinical Consultant and practising dentist Dr Mark Psillakis says the most important warning sign to look out for is a persistent sore or lesion within the mouth.

"Early diagnosis is key. Any lesion that persists for 10 days to 2 weeks should be investigated," says Dr Psillakis.

Squamous cell carcinomas (SCC): The most common of the oral cancers. 90% are squamous cell carcinomas, which are thin, flat cells on the inside of the mouth.⁵

Melanoma: Developing in the pigment-producing skin cells around the mouth and lips, melanoma can also appear within the oral cavity.

Salivary gland cancer: Responsible for producing saliva, salivary glands sit behind the jaw, in the cheeks and on the floor of the mouth. Salivary gland cancer usually presents as a lump in these areas.⁶

Lymphoma: A cancer in the lymph tissue at the base of the mandible (lower jaw) and tonsils.

Anyone can develop oral cancer, but some factors increase the risk. These can include:

• a family history of oral cancer
• tobacco and alcohol use
• chewing or using other smokeless tobacco products like snuff
• previous history of head or neck cancer
• excess sun or UV light exposure
• the presence of human papilloma virus (HPV)
• trauma to the mouth.⁴

Your oral hygienist or dentist might be able to spot the early signs of oral cancer during a regular check-up.

After an examination you may need to have a biopsy to test a sample of cells or tissue to determine whether it is malignant.

If you're diagnosed with oral cancer, the type of treatment depends on the size, type, location and how advanced the cancer is.

Surgery may be an option with some oral cancers, as was the case with Jen. After her surgery, Jen underwent radiation and chemotherapy treatment, experiencing difficult side-effects including being unable to eat for months.

The additional treatment is used to target cancer cells or tumours that cannot be removed, in an effort to reduce their size or destroy the cells altogether.

Biological therapy may be another option and is a treatment that uses specially manufactured antibodies to control the growth of cancer cells (usually only used for advanced SCC of the head and neck). This is often done in conjunction with radiotherapy.

With more challenges ahead, including a surgery to replace part of her jawbone which was damaged during radiation, Jen admits life hasn't been easy.

"I have to drink a lot of water to be able to swallow and it takes me a long time to eat even a child sized meal. I've lost a lot of weight and it's hard to get enough calories."

Still, Jen is optimistic and says she is so grateful for the things she can enjoy.

"I'm engaged and hoping to be married next year or the year after once I've recovered from my next surgery. I love to cook and am having 17 people over for Christmas lunch. I've joined an incredible global support group called Young Tongues, and the stories I see and hear on there are so inspiring and really keep me going. I miss food so much and would love a hamburger, but it's unlikely I'll ever be able to eat that. I do appreciate the things I can have though. I love ice cream and the first cup of tea I had when I was able to start eating again was the best thing I've ever tasted."

While Jen still gets tired, she is back working part-time as a programmer and is also working with Head and Neck Cancer Australia to raise awareness of oral cancer.

"Young people can get this cancer too, so if you or someone you know has an ulcer, pain, lump or bump in their mouth, head or neck that persists, get it checked. It could save a life."

If you have any concerns about oral cancer, see your GP for more information.

Head and Neck Cancer Australia have online resources for patients and carers, including factsheets, videos and podcasts. Many are available as multilingual resources.

Cancer Council provides services and support to people affected by cancer and their families. Call 13 11 20.

Young Tongues is a global support group for young people with oral cancer. You can find Young Tongues online and on Facebook and Instagram.