Husband recently diagnosed with Cholangiocarcinoma and had no symptoms

Posted by mscluppy @mscluppy, Dec 23, 2024

My husband was recently diagnosed with Cholangiocarcinoma. We were referred to Mayo and have our first appointment in a week. What I don't understand is why blood tests taken the end of Sept were all normal range. Lesion was found on the liver by accident otherwise no symptoms. They say it's about 8cm which is quite large. We don't know what to expect and it's scaring me. I'm assuming the size would mean it's more advanced. Can anyone share their experience if it's similar?

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williamdaddono | @williamdaddono | Mar 1 11:43am

In reply to @mscluppy "Can I ask how big your tumor was? Thank you." + (show)

Mine was discovered during a routine lung screen. It was 12.5cm which is very large. It was cancer and i had a liver resection in May of 2024. I was told i was cancer free until December of 2024 when a new 2cm tumor developed. I underwent Y90 treatment and am in the process of trying to get listed for a liver transplant.

denise134 | @denise134 | Mar 26 10:18am

In reply to @williamdaddono "Mine was discovered during a routine lung screen. It was 12.5cm which is very large. It..." + (show)

I had over 5 cm tumor resection at liver transplant unit at Montefiore hospital in Pittsburgh Sept 2024. They do 3 transplants a week and the team was wonderful.
Hope the best for you.

denise134 | @denise134 | Apr 1 11:24am

In reply to @astemko "No we are from Pennsylvania either Thomas Jefferson or Sloan Kettering" + (show)

I just saw you were from PA and so am I near Pittsburgh and had my liver resection done at Montefiore hospital
If you don't mind why you would not consider Pittsburgh or do you not live closeby.

denvergirl | @denvergirl | Apr 2 11:26am

Denvergirl here...I too was diagnosed with cholangiocarcinoma. No symptoms . Found by accident and also normal blood tests.
I went to Mayo in Rochester, and my Purple Team was amazing. Very glad that you are at Mayo also. They are world leaders in this disease.
Best wishes to you.

astemko | @astemko | Apr 6 9:13am

In reply to @denise134 "I just saw you were from PA and so am I near Pittsburgh and had my..." + (show)

Pittsburgh is about 5 hours from us. We are in NE Pa

mnmbeck | @mnmbeck | Jul 19 4:36pm

In reply to @astemko "I just can’t believe it went from abdominal discomfort to this! Praying for all who are..." + (show)

My husband is 56. His only symptom was extreme fatigue. He thought he was having an unusually hard time recovering from a cold. He also had some itchy skin, which prompted his doctor to test liver enzymes, which were high. Fast forward...7.2 cm lesion on his liver, plus multiple other spots on his liver. Source is bile duct. We are 19 days since diagnosis. He has had 2 stents placed in that duct (first one blocked pretty quickly), and his first round of chemo (only 2 of 3 meds given due to high bilirubin and alk phosphate). I feel so lost. This has all happened so fast. I want to run to the "right" place...and I am not sure where that is. We are currently at Methodist in St Louis Park, MN. I have requested a 2nd opinion from Mayo...but I am pretty confident my insurance will not pay for it. Mayo is not in any level of coverage for us.

mscluppy | @mscluppy | Jul 19 7:55pm

In reply to @mnmbeck "My husband is 56. His only symptom was extreme fatigue. He thought he was having an..." + (show)

My husband has intrahepatic cholangiocarcinoma. He was diagnosed last December. We chose to go to Mayo because of their reputation and my husband has medicare which is co ering a lot of the procedures. I understand if our insurance wont cover if you go to Mayo but maybe you can contact mayo and see if they can help or direct you. The surgeon we were working with is one of the best in his field so if there is anyway you can swing Mayo, I would try. It may be worth a call to them. We are very happy with the help we have received at Mayo. Good luck and prayers to you and your husband.

denvergirl | @denvergirl | Jul 20 9:34am

In reply to @mscluppy "My husband has intrahepatic cholangiocarcinoma. He was diagnosed last December. We chose to go to Mayo..." + (show)

I too would strongly suggest at least reaching out to Mayo in Rochester. I had my liver surgery there and was very pleased with everything. Also contact your insurance. Sometimes they will allow out of network treatment if you need a particular specialist.

peterxxx | @peterxxx | Sep 5 11:54am

I have also just recently been diagnosed with a type of liver cancer and they will call me next week for a pet scan and a procedure to put a camera down my throat. After that chemo. It is all very new to me and frightening. When they did the liver biopsy I had to wait two weeks for an answer and that was terrible to go through. I really don’t know much more than that yet but it is very hard on the nerves