BILIARY cancer patients Jareen Summerhill and David Meagher are sharing their stories to raise awareness – and more funding for research and clinical trials – into the rare disease that kills one Australian almost every day.
February is global Gallbladder and Bile Duct Cancer Awareness Month and Ms Summerhill, 40, and Mr Meagher, 57, are working with the Pancare Foundation to shine a light on the little-known disease.
The Foundation – a leading charity raising awareness and funding research into biliary cancer – has released a package of initiatives to help improve diagnosis, survival rates and quality of life for people living with the rare disease.
Ms Summerhill’s family helped raise $36,000 for her chemotherapy because the drug she needed – Keytruda – is not listed on the Pharmaceutical Benefits Scheme for biliary cancer treatment.
“It is on the PBS for people with melanomas, stomach cancer, breast cancer,” said Ms Summerhill, who is from Melbourne. “They get it all for free. I opted to pay because it was highly recommended and the evidence was compelling that this could work.”
Each year, about 1200 Australians are diagnosed with biliary cancer and almost 300 people die from the disease.
Key elements of Pancare’s campaign include:
ü a new fellowship for research into biliary cancer;
ü a new biliary cancer clinical trial;
ü funding for a biliary cancer research program; and
ü an animation aimed at improving awareness of biliary cancer in the general community.
There is no early detection test for biliary cancer, which has a five-year survival rate of just 20 per cent. In Australia the survival rate for all cancers is 70 per cent. Breast cancer has a five-year survival rate of 91.5 per cent, prostate cancer 95.5 per cent and stomach cancer 33.5 per cent.
Mr Meagher, from Melbourne, was 54 when he got the devastating news about what was causing him to show signs of jaundice.
“When I was diagnosed with biliary cancer I was told not to Google it. But I did. And when I looked at the survival rate I was worried that I wouldn’t even see my daughter’s 21st birthday.”
Pancare is committed to inspiring hope, raising awareness, supporting families and funding research for upper gastrointestinal (GI) cancers – pancreatic, liver, stomach, biliary and oesophageal.
Founder Associate Professor Mehrdad Nikfarjam OAM said for most people, a diagnosis of biliary cancer comes too late.
“Surgery is usually the only chance for a cure. But biliary cancer is often only diagnosed when the cancer is already advanced,” he said. “Sadly, more than two-thirds of people with biliary cancer cannot have surgery because the cancer has spread or is inoperable.”
Associate Professor Nikfarjam – a pancreas, liver and biliary surgeon and Associate Professor at the University of Melbourne – said biliary cancer was rare but the number of cases diagnosed each year was increasing.
“This is not a disease for just the older patients,” he said. “The tendency is that we are seeing people younger and younger. We see people in their 40s and 50s, in the prime of their life. My youngest patient was 14.”
Mr Meagher had an 11-hour surgery to remove a tumour, followed by chemotherapy. His cancer is in remission.
Ms Summerhill’s cancer was inoperable. She finished chemotherapy in January and has been accepted into a clinical trial looking at new treatments for biliary cancer.
“There are clinical trials that are changing things quite quickly. Science is moving rapidly,” she said. “Being accepted into a clinical trial just lifted my spirits because there is hope.”
About biliary cancer
ü Biliary cancer includes cancers of the gallbladder, bile duct and ampulla of Vatar. Most people are unaware of the function of the gallbladder, bile duct and ampulla of Vatar, which is a small opening where the pancreatic and bile ducts connect to the first part of the small intestine.
ü Biliary cancer is usually diagnosed based on the results of a clinical examination of the abdomen, imaging using ultrasound, MRI or CT, biopsy and blood tests.
ü Symptoms of biliary cancer include excessive fatigue or weakness, loss of appetite, pain the right side of the abdomen, nausea, unexplained weight loss, itchy skin, dark urine and pale stools and jaundice.
ü Jaundice is the most common initial symptom for biliary cancer. However, the disease is usually well advanced when jaundice appears.
