cholangiocarcinoma.org :: discussion boards
a resource for patients, friends, caregivers and loved ones.
You are not logged in. Please login or register.
Here I am again....please, let us continue to work on this.
Thanks a bunch,
Marion
Hello, I had all my treatments at MD Anderson in Houston, TX. Excellent cancer centerl! My doctors at the time:
Dr. Nicolas Vauthey - surgical oncology
Dr. Melanie Thomas - medical oncology
Dr. Ahmed Kaseb - medical oncology
Dr. Christopher Crane - radiation oncology
MD Anderson Cancer Center: http://www.mdanderson.org/
For our UK members. I was treated at St. James Hospital in Leeds for ampullary cholangiocarcinoma and had the whipples operation by Keyhole (laparoscopic surgery). Had the operation April 30th 2009, so I have passed my one year point.
My surgeon was Mr K Menon. He was the first surgeon in the UK to do Whipples by Keyhole. I highly recommend him, not only for his skill with the keyhole resection, but also his very kind and caring manner. He is truly a wonderful and compassionate man, and he treats people from all over the UK, on referral from other hospitals.
I have been a member for a few months and I just saw this so I'm sure that other new members have missed it too. Hope they see it now and add their info.-----
The surgeon that did my Hepatectomy and Roux en Y is Dr. Giuliano Testa at the University of Chicago Medical Center.
His specialty is living-donor liver transplant however, not a specialist
in Cholangiocarcinoma. That said, he has a tremendous attitude and
confidence, and great personality. His support staff (in particular his
nurse/coordinator) is by far the best. It helps when you have
difficulities and need answers. She was always available and could
get your answers for you either by talking to the drs. or asking them
to call you.
http://www.uchospitals.edu/physicians/g … testa.html
My Oncologist at the Univ. of Chgo. is Dr. Blaise Polite
http://www.uchospitals.edu/physicians/blase-polite.html
My Radiation Oncologist at the Univ. of Chgo. is Dr. Stanley Liauw
http://www.uchospitals.edu/physicians/s … liauw.html
Linda Z.
Thought to revive this once again. Thanks everyone.
Hi...
I first saw a hepatologist who is brilliant (and also told me my tumor was resectable):
Dr. Gores, Mayo Clinic in Rochester, MN
My resection was done by an equally wonderful surgeon:
Dr. David Nagorney, Mayo Clinic in Rochester
and I am now scheduled to see an oncologist who I hope is as good as my other two doctors:
Dr. Richard Kim, Moffitt Cancer Center in Tampa, FL
Dianne
Great Rad Man!
Dr. Mark Sands, Interventional Radiology, Cleveland Clinic, Cleveland, Ohio
216-444-5616, sandsm@ccf.org
Betsy
Hello All,
I am sending all the info I have on myself to Dr. Pawlik at Johns Hopkins-thanks again to all of you! Sincerely, Johanna
Dear Johanna, best of luck!!! We will be thinking about you and wishing for the best.
My Mom was treated at Duke University Medical Center
Her oncologist was Dr. Michael Morse.
Pam
I am new to the board but wanted to add a few fabulous docs at Barnes (St. Louis, Missouri).
Dr. David Linehan-Chief of hepatobiliary-pancreatic and GI surgery-THE best!
He did three surgeries, in three days, on my dad and two started before dawn! I think he may have spent more time than his residents and fellows(later to be known as an entourage larger than Lady Gaga's), in the ICU, that first week after my dad's surgery.
Dr. Benjamin Tan-Oncologist/Hematologist; Very conservative in treatment but very knowledgeable and caring. He has a star of a right hand wo(man)...his main nurse and our life line, Joan James.
Dr. Ida Fox-Not many of you will need her, but she is a plastic and reconstructive surgeon and AMAZING!!! My dad is a big guy (6'2", 250+pre-surgery) and his entire abdomen was left open after complications of the Whipple (x3). She did an amazing job and had a beautiful pencil line scar...before he had an awful encounter with MRSA...but not Dr. Fox's fault.
Dr. James Duncan-Interventional Radiology-I have had less face time with him, but he has been there through it all.
Dr. Jeffrey Crippin-Transplant surgeon...He turned us down, but he is one of the best!
If anyone has questions, feel free to email me!
Stacey
Again for UK members, my dad was diagnosed at Bradford Royal Infirmary and swiftly referred to Professor Lodge's team at St James in Leeds.
Mr Smith and Mr Menon are both highly recommended for the Whipple; Prof Lodge does the liver transplants.
We can not speak highly enough of Mr Menon - he did a wonderful job on my dad, hardly any complications to speak of and visited him every day for at least a week. He keeps him under surgical observation every 3 months even though my dad is also under oncology as 'he's one of our success stories'.
Mr D Swinton is my dad's oncologist, and again is highly recommended. He really knows his stuff - with a very calm manner.
Hello highsmith, I am a cc survivor thanks to Barnes. My leed doctor was Dr. William Chapman, he transplanted me twice. My oncologist was Dr. Rama Suresh and radiation oncologist was Dr. Parik. My liver doctor is Dr. Crippin. I have written on here many times about these amazing doctors and need to expierence them to know how loving and caring they are. I was never a number or just another patient, they honestly knew who I was as a person. They always took care of just not me but my family also. My coordinator is Pam Thurston and she never stops caring. I always found it amazing that they never took credit for my survivng and always credited me, my family and a higher being. I am still confused about why transplant is not an option for more of us. I am very suprised that this site list transplant treatment as controversial, I am a living testimony to how wrong that is. If you would like to know more about my amazing expierence with Barnes e-mail me, I would love to talk to you and help you navigate your way thru this miracle instution. Cathy
I agree with you about Mr Menon Katja. He did my whipple by keyhole on April 2009 (12-hour operation). I was diagnosed in York, and referred to St. James in Leeds.
Mr Menon is a wonderfully warm and caring surgeon, and he cares about each and every patient, and remembers the small details about everyone. On a six-months checkup, he took care to ask how my mum was, because I mentioned after my operation that she had her own health problems. How many other surgeons would remember this six months later?
Sylvia xxxxxx
Thanks for keeping this invaluable thread going. The goal is to include all physicians and centers, world wide.
Thanks again all you wonderful people.
Best wishes,
Marion
My surgeon for my resection was:
Myron Schwartz MD-He is part of Surgical Oncology Associate at Mt. Sinai Hospital in NYC. There are 4 surgeons in this group all with experience in CC and liver transplantation and resections.
Administrative office# 212-241-2891
Fax# 212-241-1572
Referral# 212-241-9049
I forgot to mention this Centre in Glasgow, The Beatson West of Scotland Cancer Centre.
http://www.beatson.scot.nhs.uk/content/
Gavin
About time I added our miracle workers
Dr. Alan Hemming Surgeon, UCSD San Diego
Dr. Paul Fanta, oncologist, UCSD Moore's cancer center
Dr. Thomas Savides, ERCP, UCSD San Diego
And our unsung hero, the man who suspected klatskin tumor immediately and sent us down the right path,
Dr. Sam ElSheikh, Gastroenterologist, Grossmont Hospital
What a blessing that you had someone who recognized or suspected the tumor immediately and sent you down the right path. Many are not so blessed. Thank you for sharing those who have supported you on your journey. Blessings, Susan
Hi Marion
This information is something that is so badly needed in the UK. AMMF (the UK's cholangiocarcinoma charity) is working on providing a database of as many specialists and where they are based in the UK as we possibly can.
Our new website has just gone live, and the section on UK specialists is on there, and will be expanding as more information comes in.
For anyone wishing to access this information, please see www.ammf.org.uk.
Marion , thank you for the wonderful resource you provide to the cc family with the Cholangiocarcinoma Foundation website ...
Helen
Hi Helen,
It is great that you and AMMF are working on providing this database in the UK, as as you say, it is badly needed here. In my dads case, his GI specialist at Ninewells here in Dunde was Iain Tait, and it was he that diagnosed my dads CC and did the PDT for him as well.
Great to see that your new website has went live. I was looking at your site the other day and your new site has a lot more info on it, so thank you very much indeed for the new site! And I do like the new header you have on the new site for CC, it has a lot of great info under it.
Thank you very much,
Gavin
Hi Helen. I have been wanting to get in touch with you and will do so, soon. Thanks for all the work you do. You are an amazing person. Helen, I will designate a special link to your organization for our UK members.
Best to you,
Marion
Hi,
I was treated at Mayo in Rochester, MN. I saw a liver specialist, Dr. Lewis Roberts who was very straightforward and knowledgeable. He was able to have me see the surgeon in the same day and get things going for me to set up my surgery. My surgeon was Dr. David Nagorny. He came highly recommended and I felt very comfortable with him. He was great and his nurse was awesome. I live about 8 hours from Rochester and his nurse was great about calling me after surgery and checking in on how I was doing. I followed up with an oncologist Dr. Michaela Banck, and she was great also. The oncologist was very thorough and spoke with the surgeon, the pathologist, and other doctors in her group about my case and they decided on the best course of action for me. I felt very lucky to be there and feel I received the best care I could have.
Shari
Thank you Gavin and Marion.
As far as the specialist information on AMMF's site is concerned, the details we are including have been as a result of direct contact with the hospital/team concerned - so it's slow going, but we want to be as certain as we can be that the information we are providing is as accurate as possible. We will be adding to this information as new details come in or are confirmed ...
Climbing that mountain, and looking for the miracle!!!
Helen
Helen....I agree with your approach. Presently, the CC Foundation has established contact with most of the major centers. This particular thread allows members to search out physicians in their vicinity also. Additionally, it comes first hand from patients being treated personally something, I find to be of especial value to people searching for physicians located in their immediate vicinity. Being that the US is a vast country, not all patients are near major cancer centers. And, what better testimony is there than that coming from a patient.
Climbing the mountain right along with you.
Best wishes,
Marion
Like the Cholangiocarcinoma Foundation? Share us on Facebook.
Powered by PunBB 1.4.2, supported by Informer Technologies, Inc.
©2005- :: the cholangiocarcinoma foundation :: 5526 West 13400 South, #510 :: Salt Lake City, Utah 84096 :: U.S.A. :: 801-999-0455 :: 
