Bile duct cancer patient brings awareness to rare disease

As a patient living with a rare form of cancer, Al Pace knows how important it can be to maintain a positive outlook in challenging circumstances.

Al was diagnosed with bile duct cancer, also known as cholangiocarcinoma, in 2018, after he noticed some discoloration in his eyes. This condition turned out to be jaundice, a common symptom of bile duct cancer—a form of biliary cancer that impacts the thin tubes in the digestive system that run from the liver and gallbladder to the small intestine. He underwent surgery and six months of chemotherapy that helped him live cancer-free for 18 months. But last year, a follow-up scan revealed that the cancer had returned. His care team, led by Anuj Patel, MD, and Thomas Clancy, MD, FACS, co-director of Dana-Farber’s Pancreas and Biliary Tumor Center, determined that the cancer would be too risky to remove through surgery, but could be controlled through treatment.

“Drs. Patel and Clancy are absolutely amazing, the best out there,” Al says. “They are honest, even if the news can be difficult to hear. They truly care about your health, how you feel, and understanding what is most important to you.”

For Al, that means maintaining the best quality of life possible so he can spend more time with his family, including his wife, Ann, and their seven children, Zachary, Mary, Lichele, Tripp, Isabella, Stella, and Rocco, as well as their son-in-law, Chip, and nine-month-old grandson, Kite.

“My cancer will never be cured, but thanks to my doctors and care teams, it’s under control,” he says. “I don’t know what will happen tomorrow, but for now I feel lucky.”

Al has been responding well to his treatment, and maintains a positive attitude and confidence that research taking place at Dana-Farber will lead to new treatments for bile duct cancer. But it’s not always easy.

“As a dad, I want to be able to teach my youngest son everything that I taught my oldest, and it can be difficult not knowing how much time I’ll have,” he says. “But I’m positive that the doctors at Dana-Farber will do everything they can to improve my quality of life. I can’t thank them enough for their support.”

Annually, about 8,000 people in the United States are diagnosed with bile duct cancer, which is often misdiagnosed as other types of cancer. Because it is so rare, it has been difficult to study, but notable strides have been made in the past several years thanks in part to the approval by the Federal Drug Administration of two new treatments studied in clinical trials at Dana-Farber. Al shares his story hoping to bring more awareness to the disease and inspire people to support research efforts focused on bile duct cancer at Dana-Farber.

“This type of cancer needs more research,” Al says. “We’re still learning about it. While rare, it can happen to anyone at any time, and many people don’t know what it is, how it impacts the body, and that the survival rate is typically only five years.” 

Al was recently moved by the efforts of his youngest son, Rocco, to help raise bile duct cancer awareness at his high school, where he gave a talk and handed out green bile duct cancer awareness stickers for his hockey team to wear on their helmets. “Awareness helps everyone, not just me, but I’m so proud that it was my son that made it happen,” Al said.

For other patients diagnosed with bile duct cancer, Al has some advice.

“Keep your spirits up. A positive and reliable team of doctors and nurses is there for you and is hard at work researching and testing new drugs that could be the light at the end of the tunnel of this disease. A positive attitude will help you move more smoothly through treatment.”

Support patients like Al by joining The Dana-Farber Campaign, our ambitious, multi-year fundraising effort to prevent, treat, and defy cancer. The Dana-Farber Campaign will accelerate the Institute’s strategic priorities by supporting revolutionary science, extraordinary care, and exceptional expertise. As a community, we have the power to create a more hopeful, cancer-free future—in Boston and around the world. Together, we can defy cancer at every turn. Learn more about The Dana-Farber Campaign at