Topic: Finding Cholangiocarcinoma specialist in New Jersey/New York

Hello,

My mom got diagnosed with cholangiocarcinoma recently.  Although they could not find a tumor anywhere besides lesions on the liver the pathology "favored" the bile duct.  She went through a CT scan, MRI, PET scan, EUS... the works.  Nothing found anywhere.... The 1st Cancer Center thought it was lung but Sloan Kettering disagreed and said bile duct.  With two centers disagreeing, I think I want to get a 3rd opinion.  The doc at Sloan sound knowledgeable but is basically following the standard chemo of Gemzar/Cisplatin. He said liver resection/transplant is not an option and said whenever the liver is impacted it's in the blood and it will come back.  After reading some posts, it appears that some people do in fact get surgery done on the liver so I'm wondering why he's just against it? And is the surgery even a better option than chemo? 

So to my question, has anyone had good experience with an oncologist for cholangio in the NJ/NY area?

Re: Finding Cholangiocarcinoma specialist in New Jersey/New York

lilack....sorry you had to find us, but you have come to the right place for support and  information. I support your thoughts on searching for another opinion with a specialist for this cancer.  Until others can ask some of your questions, you might want peruse a link established by our members.
http://www.cholangiocarcinoma.org/punbb … 26&p=1
Regarding surgery (resection):  Although, resections appear to be increasing ultimately, the location of tumors dictates the possibility of surgery.  You might want to ask for the physician's explanation as to why it is not possible in your Mom's case.
You are doing all the right things by continuously searching out for information by arming yourself with knowledge so vital to the process of making informed decisions. 
Others may come along real soon and share some of their experiences with you.
All my best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Finding Cholangiocarcinoma specialist in New Jersey/New York

Hello Lilack and welcome to our wonderful family. We are big believers in 2nd and 3rd, 4th opinions until you reach the point of total satisfaction. CC is a rare one and the only thing we know for sure is we don't know much so we have basically learned to follow our gut instincts and they are usually right. I do know that once diagnosed and a game plan is in place,  there is a little calm and the urge to fight takes over. You have come to the right place to vent, ask or advise. I know some members from the East Coast will be joining in to give you some advise. Hang in, be strong, you are not alone.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Finding Cholangiocarcinoma specialist in New Jersey/New York

Hi Lilack,

I've just noticed your post here about a centre in New Jersey, and I've just found this piece from my googling that may be of interest to you.

http://www.gicancernj.com/

I don't know anything about this facility but I thought I would pass the link on to you anyway. Hopefully some of the other members here will be able to offer their thoughts to you as well.

Best wishes,

Gavin

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: Finding Cholangiocarcinoma specialist in New Jersey/New York

Lilack, look at the link Marions provides above.  There are a number of outstanding places in the NY area. 

I am from NJ, now living in MD.  When my disease was unfolding several years ago, I wound up at Columbia Presbysterian (now called NY Presbyterian) because of cardiac connections I had there going back ten years.  My experience there was great, but you have to make your own choice of course.

Good luck.

Jim
Hospitals/Doctors Link,  Our Experiences:  http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126  See page 4 of thread for Dr. Tomoaki Kato info.
Major USA Cancer Centers:  http://www.cholangiocarcinoma.org/majorcancercenters.htm

Re: Finding Cholangiocarcinoma specialist in New Jersey/New York

Lilack - Trying searching for Dr. Tomoaki Kato, NY Presbyterian on this website.  I don't know him, but so many people feel he has saved their lives....worth checking out.

Mother of John who lost his battle on Oct. 9, 2009 at age 30....

7 (edited by Jim Wilde Mon, 14 Feb 2011 21:37:01)

Re: Finding Cholangiocarcinoma specialist in New Jersey/New York

Son of a gun, Dr Kato was my surgeon.  He's extraordinary!

Here's a link to info I posted about NY Presbyterian and Dr Kato:

http://www.cholangiocarcinoma.org/punbb … 26&p=4

Jim
Hospitals/Doctors Link,  Our Experiences:  http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126  See page 4 of thread for Dr. Tomoaki Kato info.
Major USA Cancer Centers:  http://www.cholangiocarcinoma.org/majorcancercenters.htm

Re: Finding Cholangiocarcinoma specialist in New Jersey/New York

Lilack---I'm also from New Jersey---I had a second opinion after initially being told I was not a candidate for resection for my IHCC from Sloan.  I took all my radiology reports and any other relevant info to Dr. Myron Schwartz at Mt. Sinai Hospital in NY after reviewing my scans he deemed me a candidate for surgery. I'am now 1 year post surgery with a clean CT just 2 weeks ago.  I agree with everyone that a 2nd and if needed 3rd opinion should always be looked into by everyone. It is true unfortunately that depending on where the tumor is and if vascular invasion, or mets to any other organ are present surgery may not be an option. I hear very good things about Dr. Kato also and if u live close to NY and get the NY t.v. stations they have many commercials regarding Dr. Kato.  Dr. Schwartz phone# 212-241-9049 Best of luck to you and your mom she is very lucky to have you.---Nancy

Re: Finding Cholangiocarcinoma specialist in New Jersey/New York

I am also a successful surgical patient of Dr. Tomoaki Kato's.  To say he is amazing doesn't even come close.  Please look him up.  His magic is limitless.  Good luck!!!!  In my prayers.

Kim