| Date: | Sat, 8 Mar 2008 11:33:46 -0800 |
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| Sender: | The Liver Cancer Support Group |
| From: | Lachlan Paterson |
| Subject: | Introduction / Diagnosed with Cholangiocarcinoma |
Hello,
I was recently diagnosed with cholangiocarcinoma. I am 37 years old, and otherwise in seemingly excellent health. I had no previous liver damage. I don't smoke, I'm not overweight, no cirrhosis, nor hepatitis, etc. My symptoms started presenting like classic gallstone symptoms. I was happy and healthy until Jan 30th, when I suddenly had severe abdominal pain. The pain dissipated, but I was left with cramping, and over the next 10 days I slowly developed pale stools and darkened urine, until finally on Feb 9th, I was quite obviously jaundiced and checked into my local emergency. The severe pain turned out to be a red herring (still unknown actually), since the cause of the jaundice (as discovered by ultrasound and CT scans) turned out to be a tumour right in middle of my liver where the bile ducts meet to drain into the common bile duct. So ignoring that inital night of pain, 10 days later, I was basically presenting as "painless jaundice" at emerg.
The initial treatment was to try to drain the bile backing up into my body. The first attempt at an ERCP failed because the tumour was blocking the access to the ducts, so much so that they couldn't put a stent in for drainage. So, instead, with another procedure, I got an external drain from the right side of the liver out through a tube between my ribs and then into a bag. It was after that treatment that I was told it was definitely a tumour, and probably primary cholangiocarcinoma. I was told it was not resectable due to the size (4cm) and location (near major arteries and veins) of the tumour, and the probable spread to lymph nodes. (they were seen as enlarged on the CT scan - which wasn't conclusive evidence at the time).
Since I was in Victoria BC (a small city) the surgeon there said she had removed liver tumours, but never one in as difficult place as mine, but she suggested that we hold off from putting in any internal stents so as not to disturb the tumour in case it was still resectable because a surgeon with more experience in Vancouver might be willing to try it. After a 10 day wait for the transfer (no bed space available), I made it to Vancouver, and then had more tests. Another CT scan, and a PET scan, an endoscopic ultrasound and a biopsy of the nodes near the tumour (the cells are adenocarinoma) and one of the enlarged local lymph nodes. The surgeon in Vancouver said that even if there was some minor spread to local lymph nodes, resection might still be possible. Unfortunately the tumour has spread along the hepatic artery and the spread to my local lymph nodes quite a bit. It is possible to reconstruct the bile ducts, and it is also possible to reconstruct the hepatic artery, and since the liver grows back it is possible (if it is otherwise healthy) to remove much of the liver and still be ok. But, the combo of all of that plus having a lot of spread to the local lymph nodes for me meant that resection wasn't a good option, and would likely make things harder. Here is the quote from my discharge:
"Healthy 37yo found to have cholangiocarcinoma. 4.3 x 3.5cm in segment 4A/4B extending to porta hepatic lymph nodes with vascular encasement"
"Pathology - adenocarcinoma"
At the Mayo clinic: http://www.mayoclinic.org/bile-duct-cancer/ they do whole liver transplants for cholangio but not if it has spread outside the liver, which mine has (to the local lymph nodes).
So, now I am looking at starting chemo about a month after first going into emergency. At least I am out of hospital for now - that is something to be happy about. The recommended chemo regime in Canada is apparently gemcitabine & cisplatin. I will be starting that soon as a first round of chemo. It will be whole body (as apposed to some isolated liver-targeted treatment) because I need to fight it in my lymphatic system too.
I would be very interested to know of new trials going on. I know in Canada that Princess Margaret Hospital in Toronto is really the centre for this. There is also quite a lot of research in Japan. Google is not so useful for medical research since most of it is not online for public browsing, at least a far as I can tell.
Every friend and acquaintance I know seems to have heard about some kind of wonderful treatment, mostly unproven, and mostly related to cancer in general and unrelated to cholangiocarcinoma in particular. I am certainly willing to be open but there is no way I would bet my life (yet) on a total unknown. That said, I am collecting all the ideas I can get.
I know the prognosis is dismal, but while I feel strong I am willing to fight this as much as possible.
-Lachlan
| Date: | Mon, 10 Mar 2008 16:17:39 -0400 |
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| Sender: | The Liver Cancer Support Group |
| From: | Lachlan Paterson |
| Subject: | Re: Introduction / Diagnosed with Cholangiocarcinoma |
Thank you Robert for your story and that info. I am going back and forth between my efforts to research/fight this as best as possible, and my efforts to avoid thinking about it and distract myself sometimes.
I should add that at the end of my hospital stay in Vancouver, we went ahead with procedures to put in a stent to get my bile draining back into the common bile duct. I still have a drain out my side, but it is capped off. My 2nd ERCP was again unsuccessful at getting a stent in, but a couple days later the radiologist managed to get one in, using the side door (so to speak) though my ribs. It was the right call by to the docs in Victoria to back off and not put in the stent, until after the Vancouver surgeons took a look at me.
Now, just 5 days later, I have left Vancouver, not because they weren't doing a good job, but just because here (in Ontario) I can be supported by my family which will make my outpatient life a lot easier. With some codeine to numb the remaining pain from the procedure - the flight wasn't as bad as I expected it would be. Anyway, as a result of moving, I will indeed be getting more opinions on everything because I will have a new set of doctors.
I am pretty convinced that it is not resectable at this time, as they (the surgeon's team) said they were willing to be very aggressive, but then after getting all the imaging, it was deemed not a good idea. But that doesn't eliminate the possibility that after some treatment, I might be in a better position for resection in the future. Nevertheless, I will indeed get another surgeon here to look at my imaging too (I have the images on a CD). On the treatment front, I am lined up to meet with an Oncologist here and also a doc for possible radiation - trying to figure out what treatment plan is the best.
-Lachlan
