Topic: Minimally invasive approaches to extrapancreatic cholangiocarcinoma.

Minimally invasive approaches to extrapancreatic cholangiocarcinoma.

http://jsurg.com/blog/minimally-invasiv … carcinoma/

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Minimally invasive approaches to extrapancreatic cholangiocarcinoma.

I do not know if this is the correct area to post this question, so please bear with me.  My 30 year old son is responding fantastic to his regimen of cesplatin and gemzar.  Tumors receding and blood counts coming down.  Anyway, what makes a person open for surgery or not.  I read you cannot have surgery if lymph node involvement then read you can.  I'm asking because I will be talking to surgeons at different institutions in the next few weeks in hopes of finding one to perform the life saving surgery on my son.  But the more I read the more confused I become.  Thank you for your patience.  And the very best of luck to all of you fighting this yourselves or for your loved one.  This site has proven itself to be so informative.

Re: Minimally invasive approaches to extrapancreatic cholangiocarcinoma.

Notdoneyet,

Regarding lymph node involvement, I think it depends how close they are to the tumor.

As far as I know, regional (local) lymph nodes do not preclude surgery.

Distant lymph nodes is a different matter. Involvement of distant lymph nodes is considered to be metastatic disease. Metastatic disease typically means that you cannot have surgery.

I don't know where the boundary lies between local and distant nodes.

Please keep in mind, I'm not a doctor. I'm a caregiver just like you.

Best of luck to your son.
Hugs,
Eli

Re: Minimally invasive approaches to extrapancreatic cholangiocarcinoma.

Thank you so much Eli.  From my understanding he has two nodes close by.  His liver appears to be fully involved and I'm not sure about the direct sites of his tumor(s).  I'm going to sit down with his MD and get the answers to these questions.  But it is very confusing to read who will perform surgery and their parameters as they all seem different. 

I believe the people on this site know more regarding this disease then the medical community.  After all we all have a personal stake in Cholangia.

Re: Minimally invasive approaches to extrapancreatic cholangiocarcinoma.

Notdoneyet,

As far as I know, metastasis to liver would be a much bigger concern for any surgeon than lymph node involvement. Metastatic disease is a strong contraindication to surgery.

I heard that Dr. Tomoaki Kato at NY Presbyterian is one of the most aggressive surgeons out there. He is known to go where other surgeons refuse to go. I would recommend getting a second opinion from him, if possible.

Re: Minimally invasive approaches to extrapancreatic cholangiocarcinoma.

Notdoneyet,

the indications and contraindications for surgery are confusing - they depend in part on the primary site of the tumor, the extent of involvement of the liver and its associated structures (bile ducts and blood vessels), and the evidence for/against spread outside the liver and biliary tree.

If you don't get satisfying answers, I am happy to discuss with you further. Dr Kato is another great suggestion.

Chris Sonnenday
University of Michigan
csonnend@umich.edu

Re: Minimally invasive approaches to extrapancreatic cholangiocarcinoma.

Thank you very very much.  I will contact him after my sons next scans are taken in the next few weeks.  He is responding so well.  Have you ever heard of anyone surviving this cancer WITHOUT surgery?  I just want to help him make his life the best possible whether it is one day or one hundred years.  I am grateful for how much more engaged in our daily lives my family has become.  We do not take anything for granted and do not leave things unsaid!  Thanks so much for your help.

Re: Minimally invasive approaches to extrapancreatic cholangiocarcinoma.

Wow, I did not know you were a member on this site.  Your office is one  I contacted.  I will be sending the discs from his initial scans this week.  His Ca 19 was at 110,000 and after 6 chemo sessions it has dropped to 1365.  I am absorbing more information every day.  My son is 30, has always lived a healthy active life.  This is such a shock.  He is tolerating the chemo well but it is still chemo.  If you had never meant him and ran into him today it would be hard to believe he has cancer.  I'm hoping to find a cure while he is healthy enough to tolerate what is necessary to accomplish it.  THANK YOU

Re: Minimally invasive approaches to extrapancreatic cholangiocarcinoma.

Thank you, Dr. Sonnenday.  It is very kind of you to take time out of your busy schedule in order to offer your professional opinion to our members.  It is very much appreciated and welcome.  Thank you.
Best,
Marion

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