February 24, 2020 at 11:29 pm #99825PennycastleParticipant
I am so sorry about your Dad. In terms of the request for information I am assuming that, since you are here, you’ve been through all the material for the newly diagnosed on the website.
If you are a Facebook user then I found the Changiocarcinoma Caregivers Support Group (https://www.facebook.com/groups/170301816796010/) a gold mine of information with lots of members who are abundant with their knowledge. I’ll post your note in the various groups and ask the FB community if there is anyone who can give you advice.
PennyFebruary 24, 2020 at 6:22 pm #99824bglassModerator
News of a likely recurrence must be disappointing after your father’s being clear of the cancer for so long. And it sounds from what you say that the infections were quite severe. I am not a medical doctor, so the following are just suggestions of points to raise with his doctors.
My guess from what other patients report is that the first priority for treatment will be continuing to address the infections and bile duct blockages. It is important that your father be seen by a doctor specialized in cholangiocarcinoma given how rare and sometimes difficult this cancer can be. The Cholangiocarcinoma Foundation website now has a provider map that can help you identify specialists in your area, if there are no experts on his medical team.
At the same time, a treatment plan is needed to address the cancer. Your father’s cancer responded well to treatment last time, and it may be that he does well under treatment again. While this cancer brings both ups and downs, I think until the doctors assess the extent of the recurrence and how it can be treated, it is too early in the process to have definite answers regarding the path ahead. It sounds from what you described that the doctors may have some more work to do to firm up the diagnosis and check if the cancer might have spread beyond the bile duct. There are more treatment options now than when your father was first diagnosed – the range of options may include another surgery, local liver-directed treatments such as TACE, chemotherapy, or newer treatments available through clinical trials. Hopefully a good treatment plan will be figured out and ready, and the infections and drainage issues will be quickly brought under control.
Please keep in touch and let us know how your father is feeling. I hope he has turned the corner on the infections and has many better days ahead.
Regards, MaryFebruary 24, 2020 at 12:14 pm #99823keshiaParticipant
Thank you for this forum. My was diagnosed with bile duct cancer in 2016. He had surgery and he was told they removed the cancer they could see and did 16 weeks of chemotherapy after surgery. After chemo, he was tested and levels were clear. Fast forward to a couple of months ago, he began to have high fever which lead him to two hospital stays at 5 days each. He was tested and placed on antibiotics because he got an infection of E-coli. He also has fluid build up.
Turns out the tests revealed a tumor in the same location he was originally diagnosed. The infection came from the bile duct being blocked and causing his bile to back up into his liver. He has a bag attached to drain fluid and a pic line for antibiotics. They have not been able to get a biopsy because they cannot get to the tumor. He has lost about 40 lbs quickly.
He has been going to a infectious disease Dr. to be treated. He has a team of Dr.’s that will meet to discuss how to move forward with his case.
Can anyone share any information? What I can look for? Questions to ask? Prognosis? Please be very honest and open. I want to prepare myself and help my dad as much as I can. Thank you so much
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