Cholangiocarcinoma - Bile Duct Cancer - anyone else dealing with this?

Hello Dan. Thanks for sharing. UMMC (University of MS Medical Center) is a training center with doctors from around the world and a great oncology department, but I don't know if it's designated as a CCC. Need to check on that. I have a lot of confidence in my oncologist. He has told me that insurance won't cover chemo without a definite diagnosis of cancer. I've had multiple endoscopies to gather scrapings for testing, as well as multiple MRIs, but none were conclusive for cancer. My CA19-9 blood test for cancer markers was very high prior to my procedure to unblock my bile ducts. Since then, they have continued to drop and are now lower than the standard used for surgery. My oncologist met with the oncology board last week and shared my case. Their conclusion was that the earlier recommendation for surgery is off the table, and I am an atypical patient without the regular signs of cancer. They've now given me a three-month period to continue doing what I normally do, after which I will have further blood work, another MRI, and possibly another endoscopy for scrapings. I'm staying busy, walking every day, going to church, praying, and putting my fate in God's hands.
Thanks for the opportunity to share with someone!

Willow7799, Have you gotten a second opinion? Is UMMC designated by the National Cancer Institute as a Comprehensive Cancer Center?

I'm a fit 69-year-old male diagnosed with distal (extrahepatic) cholangiocarcinoma in January 2024. I have completed ten infusions (gemcitabine/abraxine/cisplatin). Loss of hair and mild anemia were the only side effects.

I have completed two of 28 radiation/oral chemo (Xenoda) treatments with bile duct surgery with a Whipple Procedure as a back is scheduled at Mayo Rochester in October.

Research shows that surgery is the only possible cure. Surgery performed at a high-volume center by a high-volume surgeon has statistically better chances of recovery and survival.

Dan

Please forgive me in advance for this lengthy response, but I don't know how else to explain.
Seven months ago in early January, I was an extremely healthy 79-year-old female, who walked two miles a day, was very active and felt great. I suddenly developed jaundice, lost my taste and smell, and had darkened urine. Those were my only symptoms. I saw my primary care doctor, who referred me to an endocrinologist. Blood work showed that I had a high level of bilirubin and a CA 19-9 level of 361. I was admitted to St. Dominic's hospital in Jackson, MS, where I had in this order, a sonogram, a CT scan with dye, and an MRI. It was determined that my bile ducts were blocked at their fork to my liver. I then had an endoscopy during which my bile ducts were cleared, and two temporary stents were placed. The scrapings obtained during the endoscopy were inconclusive for cancer, and I was referred to the oncology department at UMMC. A biopsy and further scrapings were obtained during a second endoscopy and were also inconclusive. Another CT with dye and another MRI were performed and a suspicious spot was seen on my liver with a couple of others near where the stents were placed. Another endoscopy with Spy Glass was performed, and two permanent stents were placed and further scrapings obtained, which again were inconclusive. A needle biopsy of the liver spot was scheduled and then cancelled when a sonogram showed no spot on my liver. By the end of April, CA 19-9 levels had decreased, but were still high. A laparoscopy was performed with no definitive findings. Over the next two months, I recovered, got my strength back, started walking, and again felt great. Two weeks ago, I had a thorough MRI of my abdomen area and my spine with no suspicious findings. New CA 19-9 numbers had dropped from the original 361 to 74. The oncologist suspects that I may have cholangiocarcinoma. He has asked me to consider having major surgery to remove parts of my bile ducts and half of my liver. He has explained the surgery and the extensive recovery in detail. I am now an active, 80-year-old, who still drives and is currently blessed to have no pain, so I am very hesitant to have this major surgery. I would like to hear of any alternatives to this surgery. I'm also concerned that surgery would be offered in the absence of any findings of malignant cancer cells. Any advice or insight would be greatly appreciated.

Hi @colleenyoung ,
The surgery was scheduled for 12 hours but they finished in under 5 hours. It went very smooth no complications, thank god. At this point I am considered cancer free. Mayo has been amazing from the beginning and continue to be, as I'm still under their care since my case was a little out of the norm they wanted to watch me until my 1 year follow-up.

@berta929, that's quite the surgery having both the Whipple procedure and liver transplant at the same time. How long were you in the operating room? Are you now considered cancer free?

Hello,
This is my 1st time posting, I’ve read a lot of post and wishing everyone positive vibes. I just wanted to share my journey in case it helps anyone in any way. I’m 52, I was diagnosed with Bile duct cancer / CC in April 2023. I have PSC/Ulcerative colitis, so I was getting regular blood checks every 3 months. I had no symptoms, but my liver enzymes were elevated. My gastroenterologist did an ERCP with biopsy and cancer was detected. I was referred to Mayo AZ to get a full evaluation. I did radiation and Chemo treatment at the same time; 2x a day (morning and evenings); 34 total sessions. Once they confirmed cancer had not spread to my lymph nodes, I was activated on the liver transplant list. I had the Whipple procedure and a liver transplant at the same time on 9/1. I’ve had a couple hiccups along the way, but nothing major. Still dealing with some discomfort/numbness around incision area hoping as time goes by it gets better. If anyone has any questions, feel free to reach out.

~Berta

Thanks for the recommendation on website research. Will be happy to share progress on my journey.

Hello @joed787

It sounds like you have a plan in place for your chemo and then surgery. It is great that you can have the chemo nearby. Educating yourself is a valuable thing to do right now.

Are you using any particular websites to learn about this type of cancer? Google Scholar is a good resource. While it tends to be "scholarly" and more technical than some websites, you might find it helpful. The American Cancer Society's website is a more layman-friendly website.

I look forward to hearing from you as you continue this journey. Will you continue to post as you have questions or concerns?

Annual CT scan that surveils stable pleural placque in lungs from asbestos exposure 50 years ago detected a 5 cm lesion on liver. Follow on MRI confirmed diagnosis of cholangiocarcinoma. Had liver biopsy on May 2, 2024. Meet with oncologist/surgeon on the 28th and 29th. Suspect 3 months of chemo to shrink or stop growth before resection. Had grown by a third in 30-40 days. Have set up local chemo locally to where I live in Upstate New York. Hopefully will begin in early June. Meanwhile have been self educating myself on all aspects of the disease. Have been very impressed with the standard of care at the Mayo clinic. Just a little concerned with how fast treatment/appointments happen as hoping to leverage early detection.

Hello @joed787 and welcome to Mayo Connect. This is great forum to meet with others who are on the same journey! It is good that you are a candidate for resection surgery.

I'm also glad to hear that you are being treated at Mayo Clinic. Did your medical team indicate how many chemo treatments would be needed prior to surgery?

I see that you posted that you are asymptomatic now. How was the cancer found?