Re: Treatment Centers/Physicians

And we will reach the top of the mountain!

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: Treatment Centers/Physicians

"And, what better testimony is there than that coming from a patient."

That is very true Marion, and has given me food for thought - maybe in time, we can start a sub section within AMMF's website where people can leave their recommendations ...

Helen x

Re: Treatment Centers/Physicians

Helen...I like that idea.  Some people may be hesitant to leave their names especially when circumstances were not pleasant however, our board prides itself in Freedom of Speech and, I believe we have faired well with it so far.
Considering the rare occurrence of this cancer (and, more so in the UK) I believe, for valuable information such as, physicians to be of immense help to those patients searching for an experienced doctor within their area.

Helen, you are providing an invaluable service. 

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: Treatment Centers/Physicians

I would like to provide the name of a brilliant & brave surgeon - Dr. Tomoaki Kato.  He is affiliated with Colombia University in New York, NY.  Dr. Kato is a pioneer of multi-organ transplants, as well as ex vivo surgery (outside the body).  I am honored to say that I have had the pleasure of being one of Dr. Kato's ex vivo patients.  I was diagnosed with cholangiocarcinoma & after failing chemo & being told by many physicians that my tumor was inoperable & there wasn't much hope, Dr. Kato removed my tumor in its entirety.  Four months later, I am alive & well.  Please research Dr. Kato & contact him if you've been told there is no hope.  He is my hero & I hope will become yours.  Best wishes to all.  My prayers are with every one of you!

80 (edited by chezWright@aol.com Sat, 08 Jan 2011 21:24:31)

Re: Treatment Centers/Physicians

I would like to recommend my oncological surgeon at Johns Hopkins in Baltimore.
Dr. Michael A. Choti.  I owe my life to him.  He is an outstanding surgeon who specializes in pancreatic surgery, cholorectal and has done many bile duct surgeries.  He  is a wonderful human being as well with a great sense of humor.  Very, very skilled.
People interested in him might Google his name and find all that he has done and is doing.  The Cholangiocarcinoma organization had him as the featured speaker on a webinar in August 2010.

Re: Treatment Centers/Physicians

LOVE Dr Christopher Siegel, University Hospitals, Cleveland, OH.  When the Cleveland Clinic expert recommended my brother seek hospice a coule of years ago, Dr. Siegel performed a very successful surgery and my brother was considered cancer-free up til recently.  Very easy to speak with and understand, tops in his field.

Re: Treatment Centers/Physicians

Mercy Oncology, Janesville Wi, Dr Shekani is terrific
UW Madison, wi, oncoloy dept is great,
surgeon  Dr Winslow, Dr Cho is liver specialist surgeon
can't say enough good about UW madison

83 (edited by KentuckyJack Tue, 18 Jan 2011 11:09:54)

Re: Treatment Centers/Physicians

For the greater part of 2010 I was treated by the physician staff of Barnes-Jewish Hospital/Washington University Medical Center of St. Louis, MO.  I've changed to another hospital in St. Louis for further treatment at this time.

My main treating physicians at Barnes were:

Dr. David Linehan, whom I refer to as the "happy cutter", an hepato-biliary surgeon of excellent reputation and  highly experienced at liver surgery.  He twice reviewed me for possible liver resection but unfortunately both times he found that the IHCC tumor mass had infiltrated too far into the liver vasculature to permit a likely outcome of surgical success--if I understand him correctly.  The reason I refer to him as the "happy cutter" is that he seemed to me to be almost enthusiastically happy when surgery seemed a likely possibility, but spoke to me very little and much less joyously once surgery was ruled out.  He seems to truly enjoy his surgical work!  Can't say enough good about him, except I wish he could have done the resection.

Dr. Benjamin Tan, whose specailities include medical oncology and hematology.  He oversaw the chemotherapy administered to me this year, and the outcome was reported as quite successful, having shrunk the "huge" single tumor by about one-half in size from 10+ cm to about 5+ cm .over the course of treatment in spring, summer and fall of 2010.  In all honesty, his course of treatment has led me to state that Barnes has the best scientific-based (AMA and FDA-approved science, I might add, for better and for worse) presently available  for cholangiocarcinoma in the St. Louis area.  My experience with Dr. Tan would lead me to agree with another reporting here that Dr. Tan seems somewhat conservative in his approach to treatment.
  I have also consulted with another Barnes phycician of exceptionally high repute, who said to me "Unfortunately, we have not been very successful in our  consertavive approach to treating Cholangioncarcinoma, except for surgical resection where possible.  Therefore, you have little to lose by pursuing alternative treatment methods."  This means that in the understanding of some of the best minds at Barnes, they are applying treatments which are unlikely to be completely successful, and yet by adhering to conservative methods, they are closing their minds to alternative methods which might work.
    Dr. Tan has repeatedly told me that no patient suffering from cholangiocarcinoma and being treated by Barnes has survived more than four years after the date of the original CC diagnosis--unless the patient undergoes a successful surgical resection.    All that being said, Dr. Tan is, as yet, the only physician with whom I have encountered a personality conflict severe enough to require me to seek treatment elsewhere.  I am now being treated with chemotherapy by  a medical oncologist at another local St. Louis area hospital.

Dr. Robert Myerson, Professor of Radiation Oncology.  An excellent and persuasive communicator, with a great knowledge of radiology, cancer, and with the patience required to answer many of my questions about radioembolization and stereotactic body radiation therapy.  He and his associates designed and administered the five SBRT treatments in a clinical trial during August and September 2010.  Follow-up is to be scheduled.

84 (edited by jathy1125 Mon, 17 Jan 2011 21:55:59)

Re: Treatment Centers/Physicians

Tom-Sorry that Barnes was not a positive expierence for you, but for every negative there is a positive. I am the positive. I was  diagnosed thursday at 3:30 on July 31, 2008 at Barnes West County and by friday night I was at "big Barnes" and on sunday morning Dr. William Chapman was at my bedside. I never had to ask questions because they gave us so much hope and information. (I am sure we probably did ask though)
My oncologist was Dr. Rama Suresh, she sent me a hand written and signed christmas card!! My radiation oncologist was Dr. Parik, who I stopped by to say thank you to last week, knew every detail of my illness the last year even though I hadn't seen him since December 2008.
My liver doctor is Dr.Jeffrey Crippin, my new best friend!
I saved the best for last Dr. William Chapman my transplant surgeon. What can you say about a man who saved your life twice. When I coded on July 4,2009 he wouldn't give up on me and went again others negative opinions to continue life saving measures, which meant  another liver transplant, he found me a liver in 14 hours. The most amazing part is he considers me a miracle and sent me a letter saying how amazing I was. Dr. Chapmans staff is every bit as humble, dedicated and unpretenious as he is.
I feel a reponsibility to make sure this information is out there. It is  the one way I can honor my donors, the doctors and hospital that help me see my daughter graduate, 3  christmas's, 3 more birthdays....
I wish everybody who has to go through this awful cancer, could come out on the positive side like I did.
Good luck and all my prayers to this special family- Cathy

Re: Treatment Centers/Physicians

DR. MYRON SCHWARTZ-LIVER SURGEON
                                            5 east 98th st-mount sinai hospital-12th floor
                                               new york, new york
                                            phone number 1-212-241-2891
                                     
                                         DR.MAX SUNG -ONCOLOGY MEDICINE
                                             1 gustave l. levy place
                                                new york, new york
                                             phone number- 1-212-241-7902
                                       
                                       DR. JOSEF MACHAC-DIRECTOR, NUCLEAR MEDICINE
                                              one gustave l. levy place, box 1141
                                                      new york, new york
                                                    phone number- 1-212-241-7888
                                     
                                         DR. JOSHUA WEINTRAUB- RADIOLOGY
                                              one gustave l.levy place
                                                  new york, new york
                                              phine number-1-212-241-4888

all of these doctors are under one roof and are KNOWLEDGEABLEof this cancer... i cannot say enough good things about the hospital or its doctors......ron and lucille

Re: Treatment Centers/Physicians

For patients and caregivers in or near OHIO.this may b of value.

http://cancer.osu.edu/viewer/Pages/index\.aspx?P=524

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Treatment Centers/Physicians

the above link may not work ,here is another.

http://cancer.osu.edu/viewer/press/Page … ewsid=4770

  I want to let people know that the Ohio state cancer research does provide some interesting research on bile duct cancer.
this web-site will let you to a research and clinical trial about  a drug called
AZD 6244 (Selumetinib) ,I belive  it is still in phase 2.
other research clinial trials related to bile duct cancer are :
Protocol OSU-09083;OSU-09092:OSU-09067 and SWOG-50809

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Treatment Centers/Physicians

PCL....thanks for pointing this out.  Also, I would like to recommend everyone searching for clinical trials to peruse our clinical trials link, which feeds directly into clinicaltrials.gov. It is continually updated.
How to find it:
top bar,
cholangiocarcinoma,
scroll down to:
clinical trials

Best wishes to all,
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: Treatment Centers/Physicians

A big thank you to all for establishing this list. It could not have happened without you. This link has been accessed by more than seven thousand times.   
Can't thank you enough for you kindness.
Love and Hugs,
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

90 (edited by Jim Wilde Wed, 14 Mar 2012 14:57:23)

Re: Treatment Centers/Physicians

My experience with CC included the following:

3/10/09  ERCP w/ 1 long and 2 short stents    Columbia Presbyterian           Hospital (now known as NY Presbyterian)  New York, NY
Dr. Peter Stevens, Director of Endoscopy, Diag:  bile duct cancer CC
(note:  Dr. Stevens passed away 8/2011 of prostate cancer)

3/18/09    PreOp consultation              Columbia Presbyterian Hospital   
New York, NY
Dr. Tomoaki Kato, Chief, Division of Abdominal Organ Transplantation
Columbia University Medical Center
PH Room 14-105
622 West 168th St
New York, NY   10032
Phone: 212-305-5101
Fax: 212-305-5124
Secretary:  Delia Garcia

4/8/09    Left hepatic lobe resection    Columbia Presbyterian Hospital   
Dr. Tomoaki Kato,     (two VT events, 12 hr surgery)   

5/09     CAT scans                    Columbia Presbyterian Hospital   
Dr. Abby Siegel,     Oncology follow up - clear    
positive.
6/5/09    Chemotherapy
12/2009   Chemo done

12/09 to present      routine followup (CT and CT/PET scans, blood tests)

Dr Kato is a superb surgeon, and very easy to talk to.  He is also willing to take more risk than more than most cc surgeons and he has the skills to go along with that.  My experience at NY Presbyterian was overwhelmingly positive.  One aspect of NY Presbyterian that I think is unique is the way the hospital tends to insulate patients from their own administrative internal procedures.  While Dr Kato may discuss taking a patient or not for surgery with others in the Digestive Diseases Group, he is the final word, not a 'cancer board'.  He will also render opinions w/o a person formally becoming a patient and traveling to NYC.

If anyone would like to email me, feel free to use this board's email feature.  I will also make myself available to anyone who would like to talk on the phone ... just email me and I'll email my cell number to you.

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: Treatment Centers/Physicians

One more big thanks to all for establishing this list.  It has been accessed in excess of eight thousand times. 
Love
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: Treatment Centers/Physicians

I had my Whipple surgery at Strong Memorial Hospital in Rochester, NY, by Dr. James Peacock.  He was excellent, thorough, very forthcoming with information and highly skilled.

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Treatment Centers/Physicians

Thanks Randi.

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: Treatment Centers/Physicians

Surgeon - Dr. James O. Park Univ. of Wash. (he is ACES)
Oncology - Dr. Michelle Zang (South Lake clinic - Renton Wa. (again very good)

Re: Treatment Centers/Physicians

Hi all,
I thought to revive this thread once again.  Thanks for entering your information.
All my best,
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: Treatment Centers/Physicians

I needed some urgent help in identifying the right hospital and doctor for my mother hepatobiliary surgery in new York. Just about 2 weeks back we have found that she has her right duct blocked and it is a case of colangicarcinoma. We live in India but for the surgery we decided to come to new York as our doctors said here the expertise level is very high. Now we are confused as to which surgeon to choose.  We have met dr. Yuman fong  who is a hepatobiliary surgeon and oncologist at sloan Kettering. Second doctor we are meeting is dr. Jean emond at Columbia hospital, he is a hepatobiliary and liver transplant surgeon.

I am requesting to seek help in assessing whether to go for a hepatobiliary surgeon with expertise is oncology or liver transplant. Secondly, any one knows between these 2 doctors who is more known for cc surgery?

Re: Treatment Centers/Physicians

Dear Pryianka, welcome to our family. First of all it is good news that your Mother can have the surgery. If you go to the top of the page and put Dr. Fong's name in our search engine I have a feeling it will come up in older posts. As soon as our members start waking up today, I know that you will get many more posts back with lots of suggestions. In the meantime I am sening my best wishes to your Mother and please keep us posted.

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: Treatment Centers/Physicians

Kentucky Jack-

We, too, sought another opinion because I felt Dr. Tan was "too" conservative...he certainly treated us and warned us it may kill my dad (and almost did twice in five weeks) but that is the job of an oncologist! We did ultimately switch to Dr. Andrea Wang-Gillam as primary oncologist for my dad from Dec 2010-March 2011. She was proactive in all treatment and we also sought a fourth opinion in Dr. Wells Messersmith (University of Colorado Hospital , Aurora) to ensure there was no other tx. It seems between Barnes and USC there is little on the i-70 corridor in between! He assured us he would have recommended the same course of action and treatment.My dad passed away shorthly after the Colorado consult, so we were never able to follow up. I loved Dr. Messersmith's bedside manner and thought into the consultation!!! If anyone ever wants further details on Barnes or University of Colorado, feel free to email me at staceyhighsmith@gmail.com.

Stacey

Re: Treatment Centers/Physicians

Pryinka...Hopefully someone can come along and speak to you about Dr. Emond, as I don't have any information.  But, I do know of Dr. Fong.  He has seen and operated on numerous CC patients and he is highly regarded among his peers.
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: Treatment Centers/Physicians

My dad was being treated by Renato Lenzi, at MD Anderson.  Excellent ultra-competent and he himself is a cancer survivor (colon cancer 2002).  Unfortunately, Dr. Lenzi has been seriously ill, don't know why.  Now treated by Dr. Varadachary at MDA, who also specializes in GI/Cancer Unknown Primary.