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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@loribmt

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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thank you, that is what I am hoping for and I am going to university for a second opinion next week and discuss new treatments for this rare cancer. so far I have tolerated the Chemo OK and last CT showed it had not spread . Mayo is my third choice just because of distance.

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@wjdemarco

thank you, that is what I am hoping for and I am going to university for a second opinion next week and discuss new treatments for this rare cancer. so far I have tolerated the Chemo OK and last CT showed it had not spread . Mayo is my third choice just because of distance.

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It’s really good news that the cancer hasn’t spread. That’s always reassuring and welcomed! And having a second opinion from a large, teaching hospital like a university is a really good idea. They will be attuned to the most current methods of treatment.
You’re not alone in your disease. @ tball3748 was just recently diagnosed with the same uncommon cancer. Hopefully you two can continue to share your journeys.
Have your current doctors suggested surgery?

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@loribmt

It’s really good news that the cancer hasn’t spread. That’s always reassuring and welcomed! And having a second opinion from a large, teaching hospital like a university is a really good idea. They will be attuned to the most current methods of treatment.
You’re not alone in your disease. @ tball3748 was just recently diagnosed with the same uncommon cancer. Hopefully you two can continue to share your journeys.
Have your current doctors suggested surgery?

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no surgery , seems there are no tumors but I think he was waiting for that CT scan to see if has spread

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@afrancesca

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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Andrea please contact me with these resources this is the diagnosis we received from one doctor about my dad

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@kieran86

Andrea please contact me with these resources this is the diagnosis we received from one doctor about my dad

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Keiran, while we give a bit of time for @afrancesca to respond and share resources for you and others, you might wish to start with the Cholangiocarcinoma Foundation http://www.cholangiocarcinoma.org

There's a great amount of information on their website.

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@colleenyoung

Keiran, while we give a bit of time for @afrancesca to respond and share resources for you and others, you might wish to start with the Cholangiocarcinoma Foundation http://www.cholangiocarcinoma.org

There's a great amount of information on their website.

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Kieran– I am sorry to hear about your dad's dx. Thank you, Colleen, for posting the website for The Cholangiocarcinoma Foundation—you will find everything you need on that site. I have been volunteering with this organization for 5 years now—it is an amazing group of dedicated and extremely caring staff and volunteers. Many of the oncoloigists specializing in Cholangiocarcinoma at the Mayo Clinic are heavily involved in this organization. I will add the link to the information for this year's Cholangiocarcinoma Foundation's 3 day Conference since it is coming up (2/23-2/25). It will be hybrid so you could register (for free) to participate on line. Here's the link:
https://cholangiocarcinoma.org/2022-annual-conference/
The first day–Wednesday–is considered the "patient day" where you will hear patient's stories and hear about the latest research and treatments.

The Foundation also has a program (info on the site) called "cholangio connect" that will pair you with a patient and/or caregiver mentor to help give you ongoing one-on-one emotional support through your dad's dx and treatments as well as help point to to the resources you need.

If you have specific questions for me, my research advocate email is: andreafparrella@gmail.com.

You, your dad, and your family are not alone. The CCF community staff and volunteer community will walk with you through this difficult journey.

Andrea

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