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Cholangiocarcinoma Awareness Month
February marks Cholangiocarcinoma Awareness Month, a time to educate, honor those affected, and support ongoing research for this devastating disease. Cholangiocarcinoma, commonly known as bile duct cancer, is a rare and aggressive form of cancer that originates in the bile ducts. It often goes undetected until its later stages, making treatment options limited and outcomes difficult. For many, this diagnosis comes as a shock, leaving families with little time to prepare for what lies ahead.
Understanding Cholangiocarcinoma
Cholangiocarcinoma affects the bile ducts, which are responsible for carrying bile from the liver to the small intestine. Because symptoms—such as jaundice, abdominal pain, weight loss, and fatigue—often don’t appear until the cancer has advanced, early diagnosis is challenging. This cancer is considered rare, with fewer than 10,000 cases diagnosed annually in the U.S., yet its impact is profound.
The prognosis for cholangiocarcinoma is often grim. Many patients, like my own mother, receive their diagnosis when the disease has already progressed significantly. She was gone just seven months after her diagnosis, a heartbreaking reality that too many families face.
We aren't sure when my mom actually developed the cancer. She and my dad had COVID in May of the year she was diagnosed, and she initially attributed her fatigue and lack of desire for coffee—so unlike her—to lingering effects of the virus. (Imagine Lorelai Gilmore with her coffee, and that pretty much sums up my mom’s relationship with it!)
She also underwent hernia surgery a few months prior to her diagnosis. She had felt something in her abdomen and thought she might have pulled a muscle again—especially after the strenuous effort of pulling my unresponsive 250-pound father off the bed when she found him not breathing. What she was actually feeling, though, was her liver. By the time she was diagnosed, her liver and spleen were so enlarged with cancer that they were taking up far more space than normal in her abdomen. Even the doctor who performed her hernia surgery was in shock. If they had only expanded the scope of the procedure, could they have seen the cancer covering her liver in time to make a greater impact? We'll never know.
Why Awareness Matters
Raising awareness about cholangiocarcinoma is crucial to advancing research, improving early detection, and ultimately finding better treatment options. Currently, limited funding and research hinder progress in fighting this disease. Increased awareness leads to more support for clinical trials, medical advancements, and patient advocacy.
"Awareness is the first step toward change. The more we know, the more we can do to fight for those affected by this disease."
Cholangiocarcinoma remains one of the least understood and underfunded cancers. Many people have never heard of it until it affects them or a loved one. By spreading the word, we can push for more research funding, promote early detection efforts, and support the development of new treatments that offer hope to those diagnosed with this aggressive cancer.
Signs and Risk Factors
Understanding the risk factors and potential warning signs of cholangiocarcinoma can help with earlier detection and better patient outcomes. While anyone can develop this cancer, certain factors increase the risk, including:
Chronic liver disease or cirrhosis
Bile duct infections
Primary sclerosing cholangitis (PSC)
Exposure to liver flukes (parasitic infections more common in some regions)
Genetic conditions affecting the liver
Common symptoms to watch for include:
Jaundice (yellowing of the skin and eyes)
Unexplained weight loss
Persistent fatigue
Dark urine and pale stools
Severe itching
Abdominal pain, especially on the right side
Because these symptoms can be mistaken for other conditions, it’s essential to advocate for proper medical evaluation if concerns arise.
How You Can Help
If you want to honor those battling cholangiocarcinoma or remember loved ones lost, consider supporting organizations dedicated to research and patient care:
The Cholangiocarcinoma Foundation (cholangiocarcinoma.org)
American Cancer Society (cancer.org)
National Cancer Institute (cancer.gov)
Your donation, no matter the size, can help fund vital research efforts and provide resources for families navigating this difficult diagnosis. Additionally, spreading the word on social media, participating in fundraising events, and advocating for increased medical research funding can all make a significant impact.
Remembering and Fighting On
Losing my mother to cholangiocarcinoma was one of the hardest experiences of my life. In her memory, I share her story and advocate for increased awareness and research. If you’ve lost someone or know someone currently battling this disease, know that you are not alone. There is a growing community of survivors, caregivers, and advocates working together to make a difference.
We need more research, better treatment options, and a stronger support network for patients and their families. Together, we can shine a light on this silent killer and work toward a future where early detection and effective treatments are a reality.
This February, let’s raise our voices, spread awareness, and fight for a cure. 💚
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