Need Help Finding a Surgeon Who will remove tumor
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Well, since Jim and I have had the same surgeon, I will not reiterate too much. All I can say is Dr. Tomoaki Kato is like none other. If you google him, you won’t believe your eyes. He is amazing. I am alive today because of this one brilliant and very courageous man. New York may be a distance, but when your life is at stake, geography is not an issue. Please contact him. He will let you know by phone if he is able to help. Best wishes to you! I will keep you in my prayers.
Kim
Hi Ahna,
Dr Roger Jenkins at Lahey Clinic in Burlington Mass. He is AMAZING.
781-744-2500. I would at least call and see if he will review the scans for you.Sharon
Dear Ahna, I am in Phoenix and there was just an article in our paper about 2 weeks ago how the Mayo Clininc here is up and comming or I should say has arrived for dealing with CC!!! If you come in again, I would be happy to meet you all and we could talk. Not so sure about treatment at ABQ and DEN.
The Mayo’s are all very good but this one and Minnesota are tops. I would be happy to meet you at the Mayo.Oh, I forgot to tell you all where we live. We are in Cortez, Colorado. The Four Corners area. Dad’s doctor is in Durango, CO but he has been to Mayo Clinic in Phoenix for his stent placements and more recently for roto-rootering of stent. Phoenix, Albuquerque and Denver are the closest large cities to where we live, but we will send Dad anywhere to be treated by someone who says “I can do that”.
Thanks again for all of your suggestions. Finding this resource is a blessing for sure.
AhnaWow! I am so thrilled to see that so many people replied to my post! I haven’t been back to this website since I submitted the question because I thought I would get an email if someone replied. Imagine my surprise to see all your caring and great advice today!
Thanks to all of you. I will be looking into all of your recommendations ASAP.
Blessings to all of you.
AhnaAhna:
My husband Tom had 3/4’s of his liver removed three years ago…If your dad’s tumor is in the ‘common’ bile duct it is true that a new common bile duct can be recreated with the small intestine (as Tom’s surgeon explained to us). Since his original tumor was inside the left lobe of the liver, they did not have to remove the common bile duct, but did cut out most of his liver. He now has a new tumor that is blocking the remaining bile duct and involves the hepatic artery so another surgery is out of the question for him. But the excess bile that cannot get into his intestines is being drained off with an external drain (keeping him from turning into the yellow man)I would certainly encourage your dad to get another opinoin! (or more) And to find a doctor who has more experience with this type cancer.
Go with God.
MargaretHi Kathy…..thanks for pointing out the member established site for physicians and centers treating CC. Our Jim Wilde (above) kindly had posted it however, here it is again.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126
All my best,
MarionHi, Sorry to hear your dad is facing the journey through bile duct cancer. I had surgery Sept. 29th…2/3 of liver removed AND bile ducts. bile ducts were recreated using a piece of intestine. You haven’t said where you are, but Dr. Michael Choti at Johns Hopkins in Baltimore is miraculous. Marion and others can point you to the topic (sorry I’m not familiar enough with this website yet)..where Marion was collecting names of doctors and hospitals recommended by people here. There were a lot of doctors/hospitals mentioned that gave people a second chance.
Good luck..tell your dad we’re rooting for him.
kathyAhna, Sorry you had to find this site, but it is a well of information. Jim is right about a major city. I am a cc survivor. I was diagnosed on July 31, 2008 with inoperable tumor. It was in my bile duct and involved my portal vein. I was immediately put in a clinical trial. My trial involve a total liver transplant. I have had the most amazing journey the last 2 1/2 years. I am alive because of (God of course) the most amazing doctor, Dr. William Chapman at Barnes-Jewish Hospital in St. Louis, MO. This doctor saved my life twice, I had 2 liver transplants. Get more opinions and you use this site for guidance because we have all walked in your shoes.
You can read my story at thetelegraph.com by putting in christmas miracle.
Lots of prayers-CathyGO GREEN RECYCLE YOUR ORGANS-YOU CAN SAVE A LIFE!!
I agree with the others. It may be that the location of the tumor does not present itself to be operated on however, you would want another opinion from a specialist familiar with this rare cancer. Let us know how we can be of help.
All my best wishes,
MarionThat’s just nonsense (about the bile ducts). I’ve not had bile ducts for two years and doing just fine, thank you. I had surgery at NY Presbyterian (don’t live anywhere near there). You will find, because cc is pretty rare, the best treatment is almost exclusively in large city/major cancer centers. There are fewer than 2000 cases of CC diagnosed per year in the US, so no one has huge amounts of experience with it. I was operated on by a surgeon (Dr. Tomoaki Kato) who gets lots of ‘inoperable’ cases and successfully operates.
This is just one resource here under “Hospitals”:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126There is also a list of the major US cancer centers elsewhere:
http://www.cholangiocarcinoma.org/majorcancercenters.htmYou will have a much better chance of good care in one of these places. Good luck.
Dear AHAZELWOOD, Welcome to our wonderful family but sorry you had to join us. We are big believers in 2nd even 3rd and 4th opinions. If you are in a small town chances are this doctor has never treated CC. What big cities are you close to? Where in his bile duct is the CC? Beside getting that 2nd opinion, I want to encourage you to read up as much as you can on CC. It is very rare so the more knowledge you gain the better advocate you will be in helping your dad. Please let us know where you are so that we can help in finding the place for you to go to.
Hello,
My Dad was diagnosed a year ago and has already outlived the best predictions of his Doctors. He is not feeling sick, as a stent is keeping his bile duct open successfully. However, a recent PET scan revealed that his tumor is growing again. The Oncologist in our small town says his cancer is inoperable because they can’t take out a person’s bile duct. I am wanting another opinion because I have seen from people’s posts on this website that many people are living after having their bile duct removed.
Thanks for any suggestions,
Ahna
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