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Lebanon County man raises awareness for very rare cancer

Man diagnosed with bile duct cancer speaks about the disease on World Cholangiocarcinoma Awareness Day

PALMYRA, Pa. — A Palmyra man is sharing his battle with a very rare bile duct cancer on the cancer's world awareness day. It's called cholangiocarcinoma, it's a cancer that attacks your bile ducts near your pancreas. Your bile ducts are thin tubes that go from the liver to the small intestine. Their major job is to move fluid, called bile, from the liver and gallbladder into the small intestine to help digest the fats in food.

"It's a very deadly disease and it's very hard to detect," said Fred Weaver, who was diagnosed with the cancer about two years ago. "A lot of times you look at it and think it's you gallbladder or pancreas."

According to the American Cancer Society, about 8,000 people are diagnosed with cholangiocarcinoma every year. The five-year survival rate is between two and 24 percent depending on how far the cancer has spread. 

"They said the prognosis is not good at all," said Weaver. "That's when I said, 'Hey, woah. You don't know who you're talking to here.We'll beat it. I will beat it." 

Weaver did beat it. With the help of family, Weaver sought out the best care he could find and wound up at Memorial Sloan Kettering Cancer Center in New York City. 

"My best solution was, I want to kill it before it kills me," said Weaver. 

Dr. Ghassan Abou-Alfa at the cancer center spoke to FOX43 about Cholangiocarcinoma. He says, there's still not a clear understanding of who gets the disease, and there's no extreme difference between the number of men and women diagnosed with it. 

"World Cholangiocarcinoma Day is a very important day because it's important for us to recognize the difficult time the patients go through with that disease," said Dr. Abou-Alfa. "And it's reassurance that the community of scientists are doing extremely hard work." 

While Weaver is cancer free now, his oncologists tell him it's not if the cancer comes back, but when. He's now using his days to raise awareness about this cancer, and knows when it comes back, he'll lean on his family and grandkids like he did the first time. 

"You have to pull your drawers up and say, I'm going to beat this,'" said Weaver. "And we did. I beat it so far."

For more information on cholangiocarcinoma: https://www.cancer.org/cancer/bile-duct-cancer/about/key-statistics.html

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