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 Cancer Support Group.

@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!

Jump to this post

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.

REPLY

@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!

REPLY
@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.

Jump to this post

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?

REPLY
@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.

Jump to this post

@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/

REPLY
@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.

Jump to this post

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.

REPLY
@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.

Jump to this post

@lilbit78, I'm sorry that your family is dealing with this, as any cancer diagnosis can be devastating for everyone involved. Lung cancer with no primary tumor in the lung is rare, but where the human body is concerned, I've learned that anything's possible. We're all unique, with unique stories. I'm assuming that a biopsy of the liver was completed, and they identified the cells as non-small cell lung cancer. The oncology appointment is a good next step. Depending on the tests that were already run, they may want a new CT or PET scan, then they'll likely develop a plan. Waiting can be part of the diagnosis and treatment process, but it's never easy. How is your family handling the news?

REPLY

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.

REPLY
@daughterwholoveshermomhelpinghertofightbileductcancer

My mom found out she had cancer in november 2023 and in January t2024 they recently said it was stage 4 bile duct cancer and now they want to remove her gallbladder she has had a tube in her side to drain the bile and now they have inside of her she always sick cant hold down food and they still haven't put her on treatment or chemo nothing they just keep postponing it like they don't care she is 57 years old and is giving up because she feels like itnot gonna help to get treatment, plus she is tired she lives in Oklahoma and I'm in Texas I been trying to get her to get my sister to bring her to me and I've been trying to fight it for her everyday but I do research all the time online but dont know much about her condition to know what I should do any advice would help tremendously

Jump to this post

Good luck. Hope all goes well. 👍

REPLY
In reply to @daughterwholoveshermomhelpinghertofightbileductcancer "It started as bile duct cancer but the tumer is pretty big and they said it..." + (show)
@daughterwholoveshermomhelpinghertofightbileductcancer

It started as bile duct cancer but the tumer is pretty big and they said it was hard as a brick I believe it spread to her liver and it seems now her gallbladder aswell .she has been in and out of the hospital since November ,very sick ,real weak and they initially said after they told her she had cancer that it was cholangiocarcinoma (bile duct cancer )that she also had hep c and they had to get that under control before they could move further they took 3 biopsy different days and she has tubes in her side that drains the bile her back always hurts her and she is always very tired . They just recently said it was stage 4 but that they needed to remove her gallbladder before she can start chemo.when she goes Monday what all questions should she ask pertaining to everything I just mentioned. Her insurance is covered with her medical so I don't believe that's the issue . Also do u think chemo would even help or should she just live what life she has left and not be sick or either way will she continue to stay sick and not feel better

Jump to this post

Do u know or think any other treatment that would make her less sick?

REPLY
@colleenyoung

It can be so hard to help from a distance. Perhaps you can help your mom create a list of questions to ask her oncologist on Monday.

Here are some questions from Mayo Clinic that you might consider (scroll to the bottom of the link) https://www.mayoclinic.org/diseases-conditions/gallbladder-cancer/diagnosis-treatment/drc-20353374

What is my stage of gallbladder cancer?
Can you explain the pathology report to me? Can I have a copy of my pathology report?
Will I need more tests?
What are the treatment options for my gallbladder cancer?
What are the benefits and risks of each option?
Is there one treatment option you recommend over the others?
What would you recommend to a loved one in my same situation?
Should I get a second opinion from a specialist? What will that cost, and will my insurance cover it?

Most doctors will allow family members to take part in the appointment by phone if you ask. I suggest your mom call in advance to ask if she can have you on speaker phone during the consult if she would like to have you with her. Might that work?

Jump to this post

It started as bile duct cancer but the tumer is pretty big and they said it was hard as a brick I believe it spread to her liver and it seems now her gallbladder aswell .she has been in and out of the hospital since November ,very sick ,real weak and they initially said after they told her she had cancer that it was cholangiocarcinoma (bile duct cancer )that she also had hep c and they had to get that under control before they could move further they took 3 biopsy different days and she has tubes in her side that drains the bile her back always hurts her and she is always very tired . They just recently said it was stage 4 but that they needed to remove her gallbladder before she can start chemo.when she goes Monday what all questions should she ask pertaining to everything I just mentioned. Her insurance is covered with her medical so I don't believe that's the issue . Also do u think chemo would even help or should she just live what life she has left and not be sick or either way will she continue to stay sick and not feel better

REPLY
Please sign in or register to post a reply.