Despite having had invasive surgeries on their face, tongue, throat and sinuses, they have created a “virtual Christmas choir”, singing Deck the Halls to highlight their plight and lobby for better health outcomes.

Those who couldn’t sing because of surgery, pain and side effects joined in by clapping, dancing, playing an instrument or holding signs.

Head and Neck Cancer Australia chief executive Nadia Rosin said more than a thousand Australians died every year from a head or neck cancer “but unlike some more common cancers, head and neck cancer receives no government funding for prevention, early diagnosis or to improve patient outcomes”.

“Many people haven’t even heard of head and neck cancers until they, or someone they love, is diagnosed with one of these cancers,” she said.

“Think sinus cancer, salivary gland cancer, throat cancer, laryngeal cancer and lip or mouth cancer.”

Rosin said there had been an “alarming” 385 per cent increase in tongue cancers in Australian women under the age of 45 over the past three decades “and the cause is unknown”.

These cancers are traditionally found in older men with a history of heavy smoking and drinking but Rosin said the rate of tongue cancer was rising about 4.5 per cent a year in young women.

She said very few of them smoked or had been exposed to alcohol and smoking long enough for the cancers to have developed from that.

Rosin said the biggest risk factors for head and neck cancers were tobacco and alcohol use, causing 75 per cent of cases.

“But what many people may not know is that today in Australia, the human papillomavirus (HPV) – the same virus that causes cervical cancer – is the most common cause of tonsil cancer and tongue-based cancer,” she said.

“So even if you don’t smoke or drink to excess, you could be at risk.”

However she said the rise in tongue cancers in young women had not been linked to HPV.

Researchers are investigating whether gene mutations could be the cause but more work is needed.

Rosin said the choir was “elevating the voices” of survivors and advocating for the 5,100 Australians diagnosed every year and the 17,000 Australians living with the effects of head and neck cancer and its treatments.

“The reality of head and neck cancer in Australia is that it is a life-altering, and for some a life-limiting, cancer,” she said.

“People who survive are forever changed.

“Given that many people’s voices and ability to speak is changed by head and neck cancer, or its treatment, it might seem strange that we’ve decided to form a pop-up, virtual choir.

“But we worked very closely with an experienced choir master, speech pathologist and mixing engineer so that everyone who wanted to participate could participate.”

Journalist and former ABC radio broadcaster Julie McCrossin – who now lives in Adelaide – is one survivor adding her voice to the choir.

She was diagnosed in mid 2013 with stage 4 oropharyngeal cancer – she had cancer in her tonsils, the back of her tongue and the side of her throat.

“Prior to diagnosis I had been repeatedly attending my GP complaining of an ear ache, a sore throat and two lumps on my neck,” McCrossin said.

“I was taking pain relief twice a day but I wasn’t sick. I was never referred by my GP for any tests or assessment by a specialist.”

McCrossin said her cancer was caused by HPV.

“While tobacco and alcohol are the primary causes of head and neck cancers, an increasing number of people are developing cancer as the result of this sexually-transmitted virus,” she said.

“Without exception, my wide circle of friends were absolutely astonished that I had throat cancer. I had not smoked or drunk alcohol since 1979. No-one, including myself, was aware that HPV could cause head and neck cancers, as well as cervical cancer.

“There is much work to be done to improve awareness of HPV among the public and health professionals.”

Rosin said that unlike some more common cancers, there was no screening for head and neck cancer and she urged people to act if they noticed anything unusual.

She said common symptoms include a sore in the mouth that doesn’t heal, pain swallowing, a sore throat or a lump in the neck.

Other symptoms included ear pain, a blocked nose on one side and/or bloody discharge, or a bulging or watery eye.

Rosin said the finished choir song would be sent to every politician in Australia to advocate for funding support.

More information about head and neck cancer can be found here.