Bile Duct Cancer Scare

Posted by wanda1014 @wanda1014, Jan 29, 2020

My husband's doctor is in the process of ruling out bile duct cancer after a fluke discovery on some unrelated imaging that was done in December. All of his blood marker tests have come back well within normal limits but there is this lime-sized "thing" that is in his liver that is puzzling everyone. He is prone to hemangiomas and they just feel this one tumor isn't acting like a hemangioma. We were feeling rather optimistic about the marker tests being so normal, but yesterday when we went in for his biopsy, the interventional radiologist came out to talk to me, he sent me to Google to read about intrahepatic cholangiocarcinoma. He has no idea what a mistake that was to send me to Dr. Google and now I am freaking out with no medical professional to answer our questions. My husband does not smoke, drink or have any signs of any form of cirrhosis. He is not in any of the risk groups and is generally the picture of health. What are the chances this could be something else? What are the chances this is contained enough that he won't fall into these horrible statistics I'm reading about? Thanks for anything you can share with me.

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Hi @wanda1014, I know such potential news can be very scary and at this stage Google can be intimidating and overwhelming. However, I'm glad to see that the internet search brought you here to Mayo Clinic Connect. I'd like to introduce you to other members who have experience with intrahepatic cholangiocarcinoma / bile duct cancer. @jerrydrennan @krishh @chicory2010 @kjrita and @afrancesca can share their stories and give you the support and assurances you need.

You may also be interested in reading these discussions, too.
– Calling all Cholangiocarcinoma/bile duct cancer Patients https://connect.mayoclinic.org/discussion/calling-all-cholangiocarcinomabile-duct-cancer-patients/
– Cholangiocarcinoma – Bile Duct Cancer – anyone else dealing with this? https://connect.mayoclinic.org/discussion/cholangiocarcinoma-bile-duct-cancer-anyone-else-dealing-with-this/

Statistics are numbers. Focus on only one number right now: your husband. I'm sure he's number one in your books. It's good that he is not a high risk candidate, markers are normal and that he is in overall good health. Whatever treatment the future may hold, that will help. Waiting is hard, but you won't have a full picture until the results of the biopsy come back and further testing is done. What are the next steps for your husband? Any appointments scheduled?

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Hi Wanda,

I am a patient(Intrahepatic Cholangiocarcinoma) at the Mayo Clinic in Phoenix. My oncologist is Mitesh Borad. I am also a trained patient and research advocate for The Cholangiocarcinoma Foundation http://www.cholangiocarcinoma.org, a national patient advocacy organization—that is the best website where patients and their families can find accurate information about ICC research and treatment options. I am sorry you both are going through this. When do you have an appointment with the oncologist to go over the results of the biopsy? If the results do show that your husband's lesion is in fact Cholangiocarcinoma, you can contact me here and I will connect you to the resources you need. –Andrea

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@wanda1014
Hello I am Jerry Drennan I am a cholangiocarcinoma patient. I was a very healthy person until I hot sick very quick. I was diagnosed in February 2017 and I went through the mayo protocol for this. I was able to have a liver transplant in September 19 2018. I was at Mayo clinic in Rochester Minnesota. If there is any question I can help with. Please let me know. I have been out of pocket due to a automobile accident. My prayers are with yall. Jerry.

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on cycle three of chemo for Bile Duct cancer . recent CT looked like I was doing a bit better, they discovered this early due to an ER visit unrelated to cancer.
questions are around what to expect next . reading about life expectancy and does not look hopeful

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@wjdemarco

on cycle three of chemo for Bile Duct cancer . recent CT looked like I was doing a bit better, they discovered this early due to an ER visit unrelated to cancer.
questions are around what to expect next . reading about life expectancy and does not look hopeful

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That diagnosis had to be really frightening out of the blue! I’m so sorry you’re having to deal with all this uncertainty. I’ve been there too and can empathize with you. I didn’t have Cholangiocarcinoma but a blood cancer where the odds weren’t in my favor. I’m in remission for almost 3 years and things are looking great.
We don’t do ourselves any favors by looking at the internet for the prognosis and all the horror stories just serve to scare the bejeebers out of us.

You’re fortunate in that this was caught early and you’re already in treatment. There are positive stories of this cancer being caught and in remission! My neighbor across the street just went through the same battle 2 years ago. He’s out shoveling his driveway right now! He’s in full remission and all his tests keep coming back clean.
It’s not easy, but please try your best to keep a positive eye on the future! There is always hope!

How are you doing with your treatments so far?

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I was a healthy 54 yr old grandma until my diagnosis last Sept. with stage 3 CC and I was told the same “don’t Google this!”. I did try not to, but now I want to know more of not just what to expect, but treatments and new drug trials too. I’m a positive minded person and have tons of support from friends and family, plus strong faith in God that is definitely pulling me through this, so I know I’ve got a good chance to send this cancer back to where it came from. The most important thing I’ve learned so far is to be thankful for every moment I have, look for things to appreciate, not to take things for granted, tell people around me how precious they are to me and accept that God’s either going to heal me with an awesome testimony or take me to heaven where I can rest from all the mayhem. Either way, I win. Gotta keep a good attitude about this, but fight it all the way!

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@tball3748

I was a healthy 54 yr old grandma until my diagnosis last Sept. with stage 3 CC and I was told the same “don’t Google this!”. I did try not to, but now I want to know more of not just what to expect, but treatments and new drug trials too. I’m a positive minded person and have tons of support from friends and family, plus strong faith in God that is definitely pulling me through this, so I know I’ve got a good chance to send this cancer back to where it came from. The most important thing I’ve learned so far is to be thankful for every moment I have, look for things to appreciate, not to take things for granted, tell people around me how precious they are to me and accept that God’s either going to heal me with an awesome testimony or take me to heaven where I can rest from all the mayhem. Either way, I win. Gotta keep a good attitude about this, but fight it all the way!

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Amen to that! We have to remain positive in our lives in order to help us overcome great obstacles. The only two things in life we have control over is our attitude and our effort. So it’s up to us to give 100% in everything we do and be thankful for every single day.
How is your treatment going? I read through your initial posts to see that if the tumor shrinks you’ll able to have surgery to remove part of your liver. Is that happening soon?

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@loribmt

Amen to that! We have to remain positive in our lives in order to help us overcome great obstacles. The only two things in life we have control over is our attitude and our effort. So it’s up to us to give 100% in everything we do and be thankful for every single day.
How is your treatment going? I read through your initial posts to see that if the tumor shrinks you’ll able to have surgery to remove part of your liver. Is that happening soon?

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I was started on Pemazyre and am on my 2nd 21-day cycle now. My MRI is scheduled for Feb. 9th to see if there has been any shrinkage. According to Dr. Smoot at Mayo I only need like 2cm shrinkage away from the vena cava to be eligible for resection. I am hopeful and ready for my trip back up to Mayo from KC.

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@tball3748

I was started on Pemazyre and am on my 2nd 21-day cycle now. My MRI is scheduled for Feb. 9th to see if there has been any shrinkage. According to Dr. Smoot at Mayo I only need like 2cm shrinkage away from the vena cava to be eligible for resection. I am hopeful and ready for my trip back up to Mayo from KC.

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You have to be on pins and needles in anticipation for the results of the treatment. It’s such good news that you’re tolerating the Pemazyre so you can continue on with it. I believe this is the same medication my neighbor was on before his a surgery for CC. He’s now almost 2 years post surgery and doing amazingly well. This summer he was out rebuilding their patio, all the yard work, and yesterday he was out shoveling snow! He and I joke about being super humans! 😂

Waiting, I swear, is the worst! I’ll be sending up some prayers for nothing but the best news for you with your MRI. Mayo is my home away from home these days so I know you’re in the very best of hands there. It is a place of Hope!

What are some favorite places of yours in Rochester or in the Clinic? Do you wander around looking at the art?

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We loved exploring the different restaurants because they are so different than ones here in Kansas City. Our hotel has a shuttle and we have a great driver who suggests different places. We liked outdoor Twigs garden this past Fall and the Brickhouse we celebrated our anniversary!

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