CancerCompass message board discussion started by PA girl on 12/5/2007 http://www.cancercompass.com/message-board/message/all,18652,0.htm Mon, 13 Oct 2008 00:00:00 GMT Mon, 13 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Have been checking message postings recently due to a diagnosis of Klatskin Tumor with a family member, but haven't seen any recent postings.   Had tumor removed recently but no portion of liver was taken at the same time.  This seems somewhat unusual as generally a portion of the liver is taken with this kind of surgery.  Anyone have any comments about this change of procedure in removing Klatskin tumors?  There is so little information available because of this rare diagnosis.  Can anyone recommend any sites with more info. Thanks.  PAgirl PA girl Wed, 05 Dec 2007 00:00:00 GMT  On 12/5/2007 PA girl wrote:Have been checking message postings recently due to a diagnosis of Klatskin Tumor with a family member, but haven't seen any recent postings.   Had tumor removed recently but no portion of liver was taken at the same time.  This seems somewhat unusual as generally a portion of the liver is taken with this kind of surgery.  Anyone have any comments about this change of procedure in removing Klatskin tumors?  There is so little information available because of this rare diagnosis.  Can anyone recommend any sites with more info. Thanks.  PAgirlHello PAgirlYour concern is well noted...the removal of a Klatshin Tumor without removing any portion of the liver sounds odd but it may be a wonderful thing also.  This could mean the cancer did not infect any other part in the biliary system but the hepatic Y.  Did the doctor do a Roux-en-Y procedure (removal of the common bile duct and bring the small intestine up the liver to allow bile flow to the bowels? But to answer your question about information.  Go to Google and type in Klatskin Tumor and you will be over whelmed with information...be careful you don't OD on all this info like I did when my wife had the same in 2003...she is doing very well...Leonard Solutions Wed, 05 Dec 2007 00:00:00 GMT Thank you Leonard for your quick reply.  Yes, the surgeon did attach the intestine to the liver, even though the tumor was located "very high" in the bile duct.  The 'official'  description of the surgery was  Cholecystectomy and Hepaticojujunostomy.  He also removed some lymph nodes and 'sacrificed' (?) some other arteries/veins (?) still unclear to us as  it was  very difficult for family to intake all this information in the 5 minutes that surgeons give your after they come out of the operating theatre.  Our follow up visit is soon and we have many questions.  Apparently, chemotherapy will be on our agenda in the near future.  No PET or MRIs were ever done before surgery.    We will also ask if a PET scan would be in order now. Did your wife have a PET scan. There was no answer to our question either  when we asked if the tumor originated right there in the bile duct or from somewhere else. The colonoscopy was clear though.Unfortunately, our family member was released from hosp too soon and within 24 hours after release  developed a high temp and was ambulanced to our local hospital and diagnosed with pneumonia?  Clearly a frustrating set back on recovery.  Yes, like you I already have OD with  references on the net prior to surgery     What about 'classification of this type of  tumor'?  Long term prognosis??? Thank you again.  It is encouraging to us that your wife continues to have good health after having had a similar procedure.  Appreciate your response and kindness. PAGirl   On 12/5/2007 Solutions wrote: On 12/5/2007 PA girl wrote:Have been checking message postings recently due to a diagnosis of Klatskin Tumor with a family member, but haven't seen any recent postings.   Had tumor removed recently but no portion of liver was taken at the same time.  This seems somewhat unusual as generally a portion of the liver is taken with this kind of surgery.  Anyone have any comments about this change of procedure in removing Klatskin tumors?  There is so little information available because of this rare diagnosis.  Can anyone recommend any sites with more info. Thanks.  PAgirlHello PAgirlYour concern is well noted...the removal of a Klatshin Tumor without removing any portion of the liver sounds odd but it may be a wonderful thing also.  This could mean the cancer did not infect any other part in the biliary system but the hepatic Y.  Did the doctor do a Roux-en-Y procedure (removal of the common bile duct and bring the small intestine up the liver to allow bile flow to the bowels? But to answer your question about information.  Go to Google and type in Klatskin Tumor and you will be over whelmed with information...be careful you don't OD on all this info like I did when my wife had the same in 2003...she is doing very well...Leonard  PA girl Wed, 05 Dec 2007 00:00:00 GMT There is another good forum at cholangiocarcinoma.org. many bile duct cancer patiebnnts and cargivers share information and concerns there.My wife Dawn was diagnosed December of 05 with a Klitskins tumor and had a liver resection in Jan 06. Coming up on the two year aniversry - PET and CT cans clear thus far, we have been blessed. God bless,Richard Evan14 Thu, 06 Dec 2007 00:00:00 GMT Hello PAGirl,This message is in response to your latest email dated 12/05/07...sorry for the lag time between messages.I happy to hear the surgeon did the Roux-en-Y-Procedure. I'm assuming he removed the left or right hepatic duct or both, the common bile duct, the gallbladder, the cystic duct and some surrounding lymph nodes, I see you also mentioned some involved arteries/veins.  This all sound very familiar to me...my wife went through the same type of surgery. My wife's surgeon needed to remove her hepatic artery but thank God he did not need to get involved with her portal vein... Ask your surgeon if the hepatic artery was removed but he was able to stay away from the portal vein. Sometimes due to the location of the tumor in the bile duct it getts the hepatic artery involved and safer to remove it than trying to cut away the infected area...more harm may be done trying to save the hepatic artery.I know what you mean regarding information from the surgeon after surgery.  You must realize the surgery consisted of many hours and it's not a very relaxing sitaution, he most likely just wanted you to know the sugery procedure was a success.  Now comes a recovery portion which is not a positive situation 100% of the time.  You mentioned a follow up visit...I'm assuming your family member was  still in the hospital until I got further into your message. My wife was in the hospital for three weeks and she even after three weeks I think she was released too soon.  I also had to call 911 at 2:00am in the morning because she got a 103.8 fever plus her vitals were way off.  She had to be transported to a local hospital to stablize her than air lifted to UCSF in San Francisco. I'm sure you are going to have many question and I sure your surgeon will take the time to respond in a more non rushed atmosphere...hopefully.There are so many things I can tell you, but it would make this long email even longer.  There will be fevers, bile duct infections, (does your family member have a catheter inserted into the liver and the new common bile duct) if so daily flushing is important. It all depends on how your surgeon handled the entire surgery...I'm sure none are the same.With regard to the PETscan and MRI's...after surgery my wife had CTscans every 90 days for the fist year, she was clear. The second she had CTscans every 5 months, also clear no cancer. The third year she had CTscans every 6 months and on the second CTscan in December of 2006 a spot showed up...not a very good feeling. They immediately arranged for a PETscan to confirm what the CTscan showed and yes it was a 3cm tumor in a lymph node in the same area of the original cancer.The situation was this...the cancer did not come back. My wife as mentioned previuosly had 2 lymph nodes removed during the original surgery. They did see the micro size tumor in the third lymph node. And keep in mind the CTscans may miss micro size masses where Cancer can not hide from PETscans.Sorry I rambling...there is so much to say.  Bottom-line My wife did 6weeks of oral Chemo - 25 sessions of 3D Conformal Radiation and 5 session of CyberKnife Radiation...For the next 2 years she will do a combo scan every 90 days that's PET/CTscan at UCSF Medical Center, after the second year she will move the schedule out to every 6 to 8 months.  Remember what I mentioned previously cancer can not hide form PETscans  make sure your family member get on a PET/CTscan for the next 3 years...if it wants to resurface you have a better chance of seeing when it 1 or 2 cms small.I hope everything goes well for you and your family member...keep in mind caregiving is not as easy as some may think.  What ever happens, try to keep your emotions away form your patient...unless it's good times.Take care of yourself, your health is very important to you and you family member.LeonardAgain, sorry for the long long email.          's needed Solutions Sun, 09 Dec 2007 00:00:00 GMT Hi...This is Leonard, I have't heard any more about your family's situation. The last massage I sent you was 12/9/07.  Hope all is going well. Klatskins Tumors are a very serious issue.When you have the time, I would like to know how things are going.  My wife is doing well. She still needs to change the 2 catheter's at least every 60 days, but with us flushing once a day she is not experiencing any fevers and feels very good.  Naturally we hope this continues. Hope to hear from you soon...Leonard    Solutions Thu, 10 Jan 2008 00:00:00 GMT