Husband recently diagnosed with Perihilar Cholangiocarcinoma
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Louie-
Our 42 year old son was diagnosed with a Klatskin tumor last November (presented through jaundice). Initially a stent was inserted to start the drainage of his bile and his original brushing also came back as negative. His CA 19-9 was 4484. Over the next three weeks in the hospital, a biliary bag with three tubes were inserted. He was released when his bilirubin lowered.
He then went through three rounds of radiation using the M6 Cyberknife and two rounds of chemo using Gem/Cis.
Just recently, it was determined that the 3mm tumor was resectable and an operation is scheduled for 16 April. At that time, his CA 19-9 was 400 but the Dr explained that it is not a good indicator of the stage of the tumor or of its respectability. He just said that it is good that it went down.
For the operation, the Dr explained that, although it appears that the tumor has not metastasized, the first step would be to perform a laparoscopy.
If all is OK, they would then cut an L shaped incision and remove the tumor, the left lobe, and some lymph nodes. The final step is to perform a Roux-en-Y to connect the small intestine to the liver. It would be a 6 hour operation with 7-10 days of recovery in the hospital.
and they did not do a brushing or biopsy prior to surgery since having something block the bile duct was urgent enough for them to continue with surgery. However, like Pat, my mom went into surgery not knowing 100% it was CC. I’m praying things go well for you and your husband.
Hi Louie,
I’m sorry to hear about your husband but I’m glad you were able to find this place to ask questions. I definitely felt very alone and scared but after receiving advice, tips, and generous support here, I did feel a little more at ease.
My mom had a similar case to your husbands. Jaundice, then scan revealed klatskins tumor. Her CA-19 was normal. Resection of liver (35%), along with bile ducts, and roux-en-y procedure was performed. Surgery took 11-12 hours. Mom’s recovery took a little longer than others (4 weeks in hospital) due to PICC line infection and bile leak. Once my mom finally got home, she recovered a lot faster. She had to go home with a drain however that was removed a few weeks later. After the infections cleared, my mom finally started to eat and get her appetite back. I posted a few times inquiring about recovery times, you can search under my postings. Recovery is different for everyone, some people on this forum seem to recovery relatively quickly. I would think my mom’s recovery was on the slower end, however she is getting there and sometimes I forget my mom even had the surgery! Please continue to ask questions and keep us posted. Take care.
Serena
Also Louie, my C 19-9 was never more than 8 ever, not even right before surgery so I know this is not an accurate indicator of the presence of a tumor or active cc in my system. Just like Kris’s husband I went into surgery without a 100% assurance this was cancer, I figured so what, cancer or not, something is growing in my bile ducts blocking things up, it has to go. It is possible for it not to be so bad as you might imagine, I came home 5 days after surgery, I did not have any infections or complications, I went back to work , a maintenance job requiring moving around quite a bit, in just 10 weeks, My case went well, better than most I guess , perhaps because it was not so advanced. I was not diagnosed until after surgery as well so cancer or not, something is growing in his bile duct that is blocking things up. I know it’s easy to say but don’t be afraid, It can go well. God bless, Pat
Louie –
Welcome to the best little family ever. Your husband sounds a lot like mine. He was diagnosed in May 2013 with Hilar CC, Klatskin’s tumor. I have been a nurse for almost 20 years and had never heard of it. We were in shock. On June 4th he had a 14 hours surgery with a left lobe resection, partial right resection, Roun-en-Y procedure along with lymph nodes removed….there were other things they did too but the resection was the important part. He spend 14 days total in the hospital due to the length of his surgery and some complications such as a blood clot and his external bile drain plugging up. He had gone through 6 months of Gemcitabine/Oxaliplatin chemo every other week. Then a short break the almost exactly a year ago he did 25 treatments of radiation with continuous infusion of 5FU. He was quite ill for a little while after the radiation but is now deemed cancer-free. His two year follow up is is a few weeks and were are happily looking forward to it.We actually wend into the surgery not knowing 100% sure that it was cancerous, there was a slight (very slight) chance that it wasn’t. Out surgeon did not want to risk an infection related to an ERCP just before surgery so the diagnosis came after surgery.
Also his Ca 19-9 was significantly elevated at diagnosis. It has been all over the place during treatment and only in the last lab check was found to be at 35.
Hope things continue to go well and keep us posted.
KrisV
Louie, when I had an ERCP they did a brushing of the tumor in my bile duct, (Hilar CC ) and the brushings came back as a type of cyst like cells, and the doctor that performed the ERCP said often the outer cells are not but the inner cells of the tumor are cc , and he recommended having 60% of my liver removed. I did and when they did their testing on the tissues removed from my bile duct they came back positive, intrahepatic tumor was in fact, cancerous in the center, and another cell type on the outside. I believed him and proceded with the surgery as quickly as I could arrange it. they cannot disturb a tumor in the bile duct or if it was somehow opened up it is like a dandillion in a breeze, a recipe for the spread of this terrible disease. Prompt action paid off and as it turned out, I have remained cancer free for more than 9 years . I wish you and your husband the best, Pat
RE: CA 19-9 result = 10
10 is a low, normal, value for CA 19-9. Mine has gone up over 450. I’ve see others reference results in the thousands and even over 100,000.
Some people apparently just don’t produce that antigen too so maybe your husband falls into that group?
Welcome to the best little forum out there for information and support.
Take a look at my Introduction thread. I too had perihilar CCA and had it resected in Jan 2014 at age 47. Prior to CCA I was in excellent health. That helps.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=11456
I was in the hospital for 10 days and took another 4 to 6 weeks to recover at home before going back to work. I had some complications, however, and actually had two surgeries in under 24 hours and also had some wound infections to deal with. Within a year I was feeling great. Digestion and BMs have never been the same but that’s manageable considering the extent of the plumbing work that was done.
Dear Louie140, welcome to our Family but sorry you had to find us. You will find that this is the best place to be for CC support and you are no longer alone as you have just inherited a huge family! CC is very hard to DX and I can’t help you much as my husband had it in a different place and ad a Whipple surgery. I know others will be along to help and we have had Roux-n-y surgeries.
At the top of the page is a Search engine and just type Roux-n-y in it and enter. Many posts will appear on that subject. I am also posting some sites you may find helpful. Most importantly, we are huge believers in 2nd and 3rd opinions as different eyes see different things. Best wishes to you.
Newly diagnosed:
http://cholangiocarcinoma.org/the-disease/newly-diagnosed/
Free complimentary Book or e-mail download:
http://cholangiocarcinoma.org/news/foundation-resources/
Biliary drainage – stent information card
http://cholangiocarcinoma.org/biliary-emergency-information-card/
Register for a CURE
The International Cholangiocarcinoma Registry
http://cholangiocarcinoma.org/professionals/research/patient-registry/My husband was just recently diagnosed with CCA in Jan/Feb. He present with painless jaundice to the local ER. They did an ultrasound looking for a gallstone. They could not see a stone but referred us immediately to the University of Michigan. U of M did a MRI and found a 3cm mass in his common bile duct along with some other smaller leasions through his bile ducts. They did an ERCP and placed two stents in his bile ducts to helpl releave the bile/jaundice, did a brushing and a few samples. The liver specialist stated that it appears to be Cholangiocarcinoma (Klatskins tumor), however his brushings came back negative. The doctor did state that alot of times this type of cancer does not show up in brushings and is hard to diagnose, however it is presenting itself just like CCA. They presented his case to their tumor board and came up with the following course of treatment:
ERCP – to replace two current stents as they are temporary
Portal Vein Embolizm – as his tumor is in a spot where they would have to resect 78% of his liver (the right lobe)
Resection of his right liver lobe along with bile ducts
Roux-n-Y (Sp) procedureI have been doing alot of research on CCA and was wondering if anyone else had a hard time with their CCA actually being diagnosed through blood work or brushings/samples? My husbands CA-19 was at a 10. Not sure if this is good or not.
He goes for his PVE on April 3rd.
Does anyone know what kind of recovery time he will in form after his liver resection surgery? I’ve been reading is a pretty complicated surgery and a long recovery.
Any information you can give me would be greatly appreciated. Sometimes I feel like I’m going at this alone as I don’t feel like he wants to talk about it.
Thank you.
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