What cancer center sees the most bile duct cancers?
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Hi Bigtrout,
Welcome to the site, although i am sorry that you have to be here. Please come back often and post and ask as many and all questions that you may have as I know that you will get a load of support from us all.
My best wishes to you,
Gavin
PS – and like Marion says, that is a good name that you have!
bigtrout…..(great name) Thank you for sharing this with us and congratulations on the successful transplant. We so much wish for many more to follow for those patients seeking out treatment for this disease. How are you feeling presently and what led to the diagnoses of Cholangiocarcinoma? We are always interested in learning.
Best wishes coming your way (and hopefuly, a big trout)
MarionI would strongly recommend the Mayo Clinic at Rochester. I was diagnosed with CC in September, 2008. I was able to get into the Mayo and had a successful liver transplant last October. The physicians use a team approach, and the place is extraordinarily well organized. I believe that Dr. Gores is one of the physicians that established the liver transplant protocal.
Since I live in Alaska the four trips that I made to Rochester last year were difficult and time consuming and expensive, but the quality of care I received there made it worth while.
Randi,
I know Mayo is far, but they are very good about getting you in quickly. Plus they see approximately 300 patients every year, which is far more than other institutions. Dr. Steve Alberts is the oncologist that specializes in this area at Mayo, and has good bedside manner. Maybe you could send your tumor slides to them, and have them work up a second opinion remotely. They do this sometimes.
Thank you lulu07, I am glad you were able to find a skilled surgeon who would do your surgery. Hope you are recovering well from the surgery and have a happy and healthy future ahead of you. Best wishes…Randi
Randi I’am 2 weeks status post liver resection which Sloan Kettering told me was not possible. I received an e-mail from a gentleman on this site who I now consider my guardian angel. He recommended Dr. Myron Schwartz at Mt. Sinai. I called Dr Schwartz office on a Monday and was given an appointment that Wednesday. After review he determined I was a candidate for surgery and scheduled me within 2 weeks. You should bring all of your radiology discs with you. Dr. Schwartz is an extremely gifted surgeon and compassionate human being his whole surgical staff is top notch. I wish you the best of luck and will keep you in my thoughts and prayers.
Randi,
I would also suggest Dr. Myron Schwartz at Mt. Sinai in New York.
Keep us posted and good luck.
ashleyRandi….Dr. Abou-Alfa is very experienced with this disease. You can always try to go for an appointment after you have seen the doctor in Buffalo and even after you have started your chemo treatments. Just a thought.
Good luck and best wishes,
MarionUnfortunately, they could not get me in to see a specialist in CC at Sloan. They would get me in to see a general oncologist who stated that there was no special treatment or clinical trials for this type of cancer and that I should receive treatment locally. I canceled the appointment and am going to Roswell in Buffalo where I will see a specialist.
I saw Dr. Abou-Alfa and tried to get in with him but he was booking out 4-5 weeks and that is just to long for me to wait to start chemo if that is what I do.
Thanx for the input though…wish I could have gotten in sooner
-Randi-
randigb wrote:You guys are awesome. Wish I lived closer to the Mayo (ok, not really in the wintertime tho).I spoke with my internist today and she also suggested Sloan Kettering. So that is definitely on my short list.
Thank you…y’all are a lifeline.
-Randi-Oh, I’m glad you picked MSKCC!
Dr. Abou-Alfa sees most of the CC patients I think, he’s my doctor too. They’re great there, I think you’ll be very happy with the treatment!You guys are awesome. Wish I lived closer to the Mayo (ok, not really in the wintertime tho).
I spoke with my internist today and she also suggested Sloan Kettering. So that is definitely on my short list.
Thank you…y’all are a lifeline.
-Randi-In my six months of experience having the disease, I hear the following names, in order:
Mayo
MD Anderson
Sloane KetteringI’m being treated at the National Institutes of Health. They certainly see thier fair share of CC patients, but it is kind of a unique place to get into and be treated. You have to be referred and also accepted onto a clinical study.
Best of Luck,
-Z
I agree with Mayo seeing the most patients, but if you are looking for something closer I would try Sloane Kettering. I’m certainly not a doctor, but knowing about the high recurrence rate of this cancer, I would personally choose chemo for maintenance after surgery if I could tolerate it. As a caregiver for my mother who had a transplant for CC, recurrence is now our biggest fear. Even with removing the entire liver AND no sign of a viable tumor for the pathology ( the brachytherapy most likely got rid of it) the Mayo told us they have STILL seen this cancer return. Scary stuff to think about.
Best of luck.
Ashley from CT
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