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.

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

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

I would find another Oncologist asap! They should have her on chemo by now.

REPLY
@reachingout

I would find another Oncologist asap! They should have her on chemo by now.

Jump to this post

She may not be well enough for chemotherapy but I would definitely get a full explanation as to what’s going on. Ask the oncologist now. They may remove the cancerous section and then do chemo. But they really should be expected to let you know the reason behind their decisions. Call and ask as soon as possible. Her age won’t be a factor unless she has other illnesses.

REPLY
@magsbrad

She may not be well enough for chemotherapy but I would definitely get a full explanation as to what’s going on. Ask the oncologist now. They may remove the cancerous section and then do chemo. But they really should be expected to let you know the reason behind their decisions. Call and ask as soon as possible. Her age won’t be a factor unless she has other illnesses.

Jump to this post

Well they supposed to start her chemo after 2 classes she got to take they also want to remove her gallbladder before she starts chemo she go to her Dr. Monday and said she was going to ask a lot of questions

REPLY
@daughterwholoveshermomhelpinghertofightbileductcancer

Well they supposed to start her chemo after 2 classes she got to take they also want to remove her gallbladder before she starts chemo she go to her Dr. Monday and said she was going to ask a lot of questions

Jump to this post

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?

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
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
@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

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
@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
Please sign in or register to post a reply.