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

Posted by krishh @krishh, Jul 15, 2017

I'm on my fourth line of treatment. What treatments are others receiving for this? Thanks ~

Interested in more discussions like this? Go to the Liver Cancer Support Group.

@lilbit78

My FIL was recently hospitalized and they found a tumor on his liver. They diagnosed it as Non small cell lung cancer but his bone and lung scan came back great. Has anyone else come across something like this. Is it even possible? His Physician doesn’t have answers and he doesn’t see the Oncologist for 3 weeks.

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After many call we have found that it is non small cell carcinoma on the liver duct (cholangiocarcinoma). Very fatal and rare. He doesn’t see the Oncologist for 2 more weeks so no plan of care yet. My FIL doesn’t want to tell the family yet esp my MIL as she has health issues of her own. So we’re just waiting and praying. It’s hard, but we have to respect his wishes.

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@lilbit78

After many call we have found that it is non small cell carcinoma on the liver duct (cholangiocarcinoma). Very fatal and rare. He doesn’t see the Oncologist for 2 more weeks so no plan of care yet. My FIL doesn’t want to tell the family yet esp my MIL as she has health issues of her own. So we’re just waiting and praying. It’s hard, but we have to respect his wishes.

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@lilbit78, Try to keep in mind that every person that is diagnosed with cancer will process treatments differently. Advancements are happening fast in some areas of cancer research, and statistics that you see today are generally lagging behind. I have stage IV lung cancer, and the statistics for survival are based on people that did not have access to the treatment that I'm on today. At 4 years post-diagnosis, I've already surpassed my initial prognosis. There is real hope in today's targeted cancer care.
"In the last several years there have been significant new insights into the molecular pathogenesis of CCA. New diagnostic and therapeutic modalities have also been developed, resulting in improved detection rates and outcomes. In addition, we have now entered the era of targeted therapies for human cancers." (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2547491)

There are others on Connect facing a similar diagnosis. Here's a link to a related post: https://connect.mayoclinic.org/comment/652854/

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@lilbit78

After many call we have found that it is non small cell carcinoma on the liver duct (cholangiocarcinoma). Very fatal and rare. He doesn’t see the Oncologist for 2 more weeks so no plan of care yet. My FIL doesn’t want to tell the family yet esp my MIL as she has health issues of her own. So we’re just waiting and praying. It’s hard, but we have to respect his wishes.

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Hi @lilbit78, I'm glad that you were able to get clarification on your father-in-law's diagnosis of non small cell cholangiocarcinoma. I moved you posts to this existing discussion:
- Cholangiocarcinoma - Bile Duct Cancer - anyone else dealing with this? https://connect.mayoclinic.org/discussion/cholangiocarcinoma-bile-duct-cancer-anyone-else-dealing-with-this/

I did this so you can connect with other members with a similar diagnosis more easily. I can imagine that this is very hard on everyone, especially the waiting. Is he being seen at a cancer center? Is it close to home?

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@colleenyoung , we finally saw his Oncologist yesterday and we found out that the cancer spread to both his liver lobes. My husband went with my FIL, they left there with: it’s fatal and we can do palliative treatment chemo every 3 weeks as long as the body can take it. Then 4 hrs later the Oncologist and his team came up with a new plan it’s called T.A.C.E. Procedure. They feel real confident that it will cure the cancer. Praise God that we have another option. A great one. They said that it has over 70% success rate.
He also finally told my MIL now that he had something to tell her and surprisingly she took it well. My FIL has also been diagnosed with cancer 2 other 2x’s (no lie) and each time he was ready for surgery they came back and said that it was gone they couldn’t find it. Prayers work and Gods not done with him yet!

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@lilbit78

@colleenyoung , we finally saw his Oncologist yesterday and we found out that the cancer spread to both his liver lobes. My husband went with my FIL, they left there with: it’s fatal and we can do palliative treatment chemo every 3 weeks as long as the body can take it. Then 4 hrs later the Oncologist and his team came up with a new plan it’s called T.A.C.E. Procedure. They feel real confident that it will cure the cancer. Praise God that we have another option. A great one. They said that it has over 70% success rate.
He also finally told my MIL now that he had something to tell her and surprisingly she took it well. My FIL has also been diagnosed with cancer 2 other 2x’s (no lie) and each time he was ready for surgery they came back and said that it was gone they couldn’t find it. Prayers work and Gods not done with him yet!

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Thanks for the update. What a rollercoaster from hearing the news about cancer spread to a hopeful treatment option.

There are few discussions about TACE here that you may wish to review and join.
See all related TACE discussions here: https://connect.mayoclinic.org/search/discussions/?search=TACE

Sending hugs and strength.

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@hopeful33250

@krishh I appreciate all the details you have provided regarding your treatments and the way you have responded to them. I am sorry that you have had such a hard time with the treatments so far. Sometimes large medical centers who are research-oriented can provide some additional answers. Do you have a large university medical center nearby where you can get a second opinion? Or, are you able to consult with a Mayo location (Minnesota, Arizona and Florida)? Teresa

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My name is Joe Duffy. Just beginning my journey with Cholangiocarcinoma. I will start neoadjuvant chemo and hopefully resection liver surgery in 3-4 months. Expect it to be a long battle as my research has indicated that this is tough adversary. Glad to be a part of your communication forum.

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Having first chemo treatment after I meet with oncologist and surgeon in Rochester Mayo location at the end of May. Just pleased that I am a candidate for resection at this time. Currently asymptomatic for now.

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@joed787

Having first chemo treatment after I meet with oncologist and surgeon in Rochester Mayo location at the end of May. Just pleased that I am a candidate for resection at this time. Currently asymptomatic for now.

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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?

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@hopeful33250

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?

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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.

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