Cholangiocarcinoma is a rare and aggressive cancer which originates from the bile ducts and has a devastating impact on major organs such as the liver, gallbladder, stomach, pancreas and duodenum (small intestines).

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On Thursday 15 February, more than 90 Australian landmarks lit up green to signify respect for those who have been lost to the disease.

Advocates aim to raise awareness of the disease and place it on the radar of health care professionals and the community.

The Light Australia Green campaign was orchestrated by Cholangiocarcinoma Foundation Australia (CCF Australia), a patient-led cancer, genomic and advocacy research group with a focus on fully utilising the latest medical science in the search for solutions.

A resident of Coffs Harbour since 2002 and a member of a local Probus group, Lynette Williams began her journey with cholangiocarcinoma in 2020.

Having received an early diagnosis, Lynette said her journey is unlike most people’s.

“I had mild indigestion and I owe my life to my very thorough Coffs GP who ordered an ultrasound,” Lynette told News Of The Area.

“There was a tumour.

“I had, I believe, the only ever liver resection performed at Coffs Base Hospital in late 2020 by our wonderful Upper GI specialist.

“Biopsy then showed intrahepatic cholangiocarcinoma.”

Lynette then underwent six months of chemotherapy.

“Chemo is always given after complete surgical removal, because of the high recurrence rate of the disease.

“In my final week of chemo I had another tumour – a recurrence.

“I had a second successful liver resection in Sydney by an amazing surgeon, who visits the Coffs Specialist Centre every four weeks.

“Then I had two different chemos and so far, I am cancer-free for 30 months,” she said.

Lynette had all her chemotherapy treatments at the North Coast Cancer Institute at Coffs Base Hospital.

“I cannot speak too highly of the care I received there.”

For the best outcomes, Lynette said your oncologist should specialise in cholangiocarcinoma.

“We have a great one in Coffs,” she said.

With a shared vision to enhance the quality of response, survival and life quality for those with cholangiocarcinoma in Australia, Cholangiocarcinoma Foundation Australia recognises that the key to overcoming this cancer lies not just in research but also in education empowerment.

“The Foundation asserts that equipping individuals to actively participate in their treatment journey is paramount,” CFA CEO and founder Steve Holmes told News Of The Area.

“The big difficulty we face is that symptoms are not obvious or vague, making it very difficult to implement preventative early detection initiatives.

“In some cases, leading people to be misdiagnosed with other less serious conditions before receiving the correct diagnosis.

“A cholangiocarcinoma diagnosis is a type of cancer they have likely never heard of and know nothing about.

“In 85 percent of cases the cancer is advanced, with a poor three to eight percent prognosis, and an average life expectancy between seven to twelve months with limited effective treatment options available,” he said.

By Andrea FERRARI