Sporadic hilar chlolangiocarcinoma
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- This topic has 9 replies, 8 voices, and was last updated 9 years, 7 months ago by middlesister1.
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April 29, 2015 at 1:10 am #87670middlesister1Moderator
Hi , my mother couldn’t be resected, so I’m sorry I can’t offer advice, but am so glad to hear all went well and looking forward to many more positive updates!
CatherineApril 28, 2015 at 4:03 pm #87669momsrecoverySpectatorThank you Pat. The tests didn’t take long. My parents live close to Manhattan so that made things easier. Once the MRI was ordered by the liver specialist, the ERCP followed a few days later and then we went for the first surgical consult 2 days later. The second surgeon we met (who is at Sloan Kettering) wanted a CT angiogram to be done and it happened that afternoon. Surgery was scheduled the next day following the results of the CT. There was one additional test prior to surgery – another ultrasound performed directly by the radiologist.
It’s great news that the recent resection patients have promising outcomes. I hope you are doing well too.
April 28, 2015 at 3:37 pm #87668herculesModeratorMy, your mother’s case sure moved along quickly it seems, I don’t know how long all the tests you mentioned took to do, I was almost 5 months from finding a tumor to surgery. I hope all goes well, there are a few recent resection patients posting lately, and all, including your mother, sound promising. I wish you continued success, Pat
April 28, 2015 at 3:10 pm #87667momsrecoverySpectatorHi everyone. Thanks for all of the support. I really appreciate it. I wanted to give an update. My mom’s resection took place on Saturday. The surgery went well without any surprises. The tumor seems to have been fully removed. It was pushing on the portal vein and a portion of the vein was cut. The surgeon mentioned that one of the nearby lymph nodes may have cancer involvement but we won’t know for sure until pathology comes back. This of course worries us. For now, we’re focusing on recovery from the surgery.
Any feedback is much appreciated. Thanks again
April 16, 2015 at 4:45 pm #87666mbachiniModeratorI also wanted to extend my welcome to this site, sorry to hear of your mother’s diagnosis, but very happy to hear of the upcoming surgery!!!! Please keep us posted….sending good thoughts and prayers your way!
MelindaApril 10, 2015 at 12:59 am #87665kvollandSpectatorWelcome –
This is the best little family no one really wants to be a part of. Sounds like your mom is going to go through the same thing my husband did two years ago. He had hilar cc (Klatskin’s tumor), the left side of his liver was basically dead. He had the same surgery as your mom….He had has left lob removed along with a good portion of his right. Other than a recent bleeding ulcer and some complications from that (pneumonia) he is doing very well and had even returned to work.
You will find lots of information and support here. I know I would have been a basket case without all these wonderful people.Keep us posted.
KrisV
April 9, 2015 at 7:48 pm #87664dkillion10MemberMomsrecovery, You have done a great job in advocating for your Mom. She is fortunate to have you by her side through this. I can contribute my experience as like you, I went to NYC to interview surgeons. We narrowed down to Dr Jarnagin at MSK and Dr Guarrera at Columbia. We were very comfortable with both. All other things relatively equal, we went with Dr Guarrera because of his personal approach and the fact the he could get me in right away (time was critical). I had surgery on July 16th and we haven’t looked back. We could not have asked for a better outcome. Dr Guarrerra was fantastic and his team at Columbia were wonderful. The great thing is you have some excellent options.
April 9, 2015 at 7:08 pm #87663lainySpectatorDear Momsrecovery, welcome to the best place to be for CC support. You are not only on the right track you have taken the bull by the horns. Excellent advocacy work and I am sure your Mom is proud and thankful to have you! You may have heard that surgery is our favorite word. At this point there is not much I can add, you did a fabulous job and are headed is a good direction. Please keep us updated on Mom’s progress and we will be awaiting for the big date!
April 9, 2015 at 6:41 pm #87662momsrecoverySpectatorMy account just got approved and this posting is from me. Thank you all for any comments.
April 9, 2015 at 6:22 pm #11130daisySpectatorPosting for a friend whose account is not yet approved so she can’t post.
I’m sorry we are meeting this way but so grateful that this site and discussion board exist. Like you or a loved one, my mom was diagnosed with chlolangiocarcinoma – sporadic hilar chlolangiocarcinoma. I want to share the details of what is known and would appreciate any information, feedback, experiences any is willing to share, especially as it relates to course of action, etc.
My mom, 65, was diagnosed last week. Based upon her MRI, ERCP, and CT angiogram, she has a mass in her bile duct, the right side of her liver has begun to shrink and the left side has started to grow. The ERCP brushing did not show cancer cells. There are signs that the tumor looks to be close to the portal vein and it might be touching it but there should be minimal involvement. Her CT came back clear so all signs show this has not spread further. Fantastic news!
We’ve met 4 surgeons in Manhattan in less than 1 week. All have given the same information to us. They can do a resection (YES!!) with hopes of it being a cure and there is still a small possibility this might not be cancer but we won’t know until after surgery. From reading up, I now know how fortunate and amazing my mom’s situation is for CC. We are SO grateful.
The surgical plan is to remove the tumor in the bile duct, reattach the bile duct to the small intestine, remove the right side of the liver and 15-20% of the left, remove the gallbladder, and remove lymph nodes.
The current plan is to move forward with a resection within 2 weeks. My mom chose Dr. William Jarnagin at Memorial Sloan Kettering.
I would love opinions on whether we seem to be on the proper path, opinions on MSKCC or just any thoughts in general. We are open to honesty and a change of plan if necessary.
Thank you all so much. Remaining positive and hopeful
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