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Jan’s Story of Hope

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My journey with cholangiocarcinoma (also known as bile duct cancer) began when my mom was diagnosed with the same rare cancer and passed away in 2011. 

In 2018, I was on the operating room table for a gastric sleeve when the surgeon flicked the camera up to look at my liver and saw a shadow. The surgeon aborted the planned surgery and performed a biopsy instead, saving my life. 

After the local hospital was unable to determine pathology, my tumor biopsy sample was sent to the Mayo Clinic. Approximately two weeks later, I received the devastating news that I had cholangiocarcinoma, over the phone, in the middle of the day, alone. 

After several appointments locally, I realized I desperately needed a second opinion. I knew cholangiocarcinoma waits for no one, and thankfully my incredible internist, Dr. Maleh, and his amazing team secured me appointments with two of the leading oncology surgeons specializing in cholangiocarcinoma and liver resections. I questioned the local advice I was given, as they preferred to focus on my weight and wanted me to proceed with the gastric sleeve, then come back in a few months to do a resection or chemotherapy. 

As a retired Registered Nurse and having cared for my mom during her cholangiocarcinoma journey, I knew that waiting was not an option. I left that appointment an emotional mess because I knew firsthand how awful this cancer truly was and felt overwhelmed and hopeless. However, I found my hope at Memorial Sloan Kettering Cancer Center (MSKCC) from Dr. Jarnagin. 

Approximately two weeks after my initial appointment with him, I was on the operating room table for a partial liver resection and cholecystectomy where they removed 5 x 7″ of my liver and my gallbladder. I then underwent six months of “mop up” chemotherapy under the care of my oncologist. I must admit chemotherapy was tough, with hand foot syndrome rearing its ugly head only four days into my first cycle and what we have labeled epic vomit sessions that often lasted three hours which of course only happened, like clockwork, in the middle of the night. Who needs sleep, right? 

I am currently NED (no evidence of disease) and do regular lab work and scans to catch anything early. Until then, I focus my energy on raising awareness and research funds for cholangiocarcinoma. We hold charity dinners, wine tastings, have been interviewed by CBS3 and local talk radio, had multiple articles written about my journey and our advocacy, put up awareness billboards locally, held raffles, and much more. Our favorite thing is to host warrior weekends or get togethers, where we open our home up to fellow warriors and their families. These get togethers are often filled with lots of laughs, stories, and tears, but the love and support from someone who is going through the same journey as you is priceless. 

Our biggest fundraiser is our annual 5k held in Newark DE called, “The Quack Out Cholangio 5k Run/Walk to Crush Bile Duct Cancer,” happening in May 2023. To us, that weekend isn’t only about raising money and awareness, but also about the incredible fellowship between warriors who travel from all over the US to participate. We strongly believe that awareness equals research, research equals new and improved treatment options, and new treatment options equal hope. 

In 2022, I was honored and humbled to receive the Mark R Clements Award for Excellence in Community Impact from the Cholangiocarcinoma Foundation for my awareness and advocacy. I still have rough days, but knowing we are making a difference makes it all worthwhile. 

I share my story because I strongly believe the following: 

  1.  Second opinions save lives. Sometimes third or fourth ones do too! 
  2. Make sure you seek out an oncologist that specializes in your cancer.
  3. To make sure patients know to reach out to one of NORD’s member organizations, the Cholangiocarcinoma Foundation (cholangiocarcinoma.org).
  4. To give someone newly diagnosed with cholangiocarcinoma hope…. because we all need hope.  

The National Organization for Rare Disorders (NORD) is committed to telling the stories of patients and families with rare or undiagnosed diseases and helping them live their best rare lives. If you would like to share your story, contact NORD here.