Warning over ‘staggering’ increase in cancer with no screening program

A Sydney woman woke up from a 19 hour surgery without her teeth and missing half her mouth after giving doctors permission to do “whatever they needed to do” to save life.

Pictured at her home in Castlecrag in Sydney is Sarah Susak and her 9-year-old daughter Stella. Picture: Richard Dobson

Sydney woman Sarah Susak woke up from a 19 hour surgery without her teeth and missing half her mouth after giving doctors permission to do “whatever they needed to do” to save her from a devastating disease that’s on the rise.

Surgeons operating on the Castlecrag author and mother emerged from her surgery “wet with sweat”, she told The Daily Telegraph, her doctors having made the decision to access her tumour from within her mouth.

The cancer that hospitalised her is on the rise in young women with none of the usual risk factors, and experts have warned that cases are remaining undetected until advanced stages.

Ms Susak turned to meditation after ‘traumatic’ surgery and chemotherapy. Picture: Richard Dobson

Ms Susak was diagnosed in 2017 with cancer in her glandular tissues and did not fit the cancer’s typical profile – she was a non-smoker, a young woman and did not have HPV.

The first symptom she remembered experiencing was a feeling of “electric shocks” in her face.

When her husband kissed her, she said he “pushed down hard on my lips and it really was like an electric shock”.

Her symptoms were initially misdiagnosed by a GP as nerve pain. When the feeling of electric shocks worsened, a visit to an ear nose and throat specialist revealed their true cause.

“There was a huge tumour inside my mouth,” Ms Susak said.

“You could just see it from just opening my mouth so it was quite confronting.”

Upon diagnosis, Ms Susak said she was told the tumour would likely “metastasise to another part of your body, and then you’ll likely die”.

“It was pretty grim,” she said.

Head and neck cancers are a broad group that includes those forming in the salivary glands, the tongue, thyroid and throat.

Head and Neck Cancer Australia chief executive Nadia Rosin said “out of all cancer they’re probably the most brutal and debilitating you can have”.

Sarah Susak, who had her head and neck cancer initially misdiagnosed as nerve damage. Picture: Richard Dobson

“Over the last 30 years there’s been a pretty staggering 385 per cent increase in young women being diagnosed with oral cancers that don’t have any sort of traditional risk factors,” Ms Rosin said.

Despite its debilitating impact and concerning rise, there is limited awareness of head and neck cancer symptoms and no screening program exists.

Ms Rosin said due to their diverse symptoms, “there’s never going to be one test that can pick up all these different types of head and neck cancers”.

“Even [for] GPs and dentists it’s not necessarily on their radar,” she said.

Screenings aim to improve survival rates by detecting cancers before symptoms occur, and are widespread for breast, bowel, cervical and lung cancers.

Ms Rosin said “early detection is absolutely crucial” for head and neck cancers.

“It’s literally the difference between someone getting a little bit of their tongue removed to getting half to three quarters of their tongue removed and not being able to eat, talk or swallow normally for the rest of their lives.”

Research has indicated head and neck cancers are expected to increase globally by 30 per cent between late 2024 and 2030.

Without an effective test, Ms Rosin urged Australians to “be aware of your own body and what’s normal and what’s not”.

“A lot of the signs and symptoms for head and neck cancer are really benign,” she said.

“Say it’s a mouth ulcer that you’ve had for a couple of weeks, you might have a lump on your neck, you might have a hoarse voice. These are often the pretty standard signs and symptoms of head and neck cancer.”

Originally published as Warning over ‘staggering’ increase in cancer with no screening program