Is there a best place to be treated for cholangiocarcinoma?
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Hello Johanna, I am one of the few survivors of cc on this site. I am cancer free, thanks to Barnes-Jewish Hospital in St. Louis MO. Dr. William Chapman is in the top 100 doctors in the world, (google him). When I was diagnosed in Aug 2008 only Barnes or Mayo were offering cc clinical trial. I was told 6-8 months with out transplant I was stage 4. In the last 2 years I have done chemo, chemo and radiation,oral chemo and 2 transplants. My second transplant was due to radiation damage and was given maybe 36 hours to live, Dr. Chapman never gave up and found me a new liver! It has been 2 long years and I was always treated with so much love and hope. Dr. Chapman and staff are definetily Gods angels. Good luck and lots of prayers your way. Cathy jrdunnagan@gmail.com
Hello Johnna,
My 78 year old mother just had surgery in August at John Hopkins.. her surgeon was Dr Pawlik and we were all very impressed with him. depending on where you live in delaware this might be little closer for you and I would say he was top notch.. this is one of his specialties. after more than 10 hours of surgery he seemed like he could start all over again.. very energenic and positive.. My mother really liked him. We also met with a Dr Marsh at University of Pitts.. he definatley seemed very knowledgeable as well but Hopkins was a much better location for our family.. very fortunate to be so close to so many great hospitals that could handle this disease.
jladams,
I’m fairly new to this site (two months), as my partner Ben was in a similar situation. An MRI discovered a tumor in his liver – upon discovering that we immediately made an appointment for Mayo Clinic (where they diagnosed the CC). I would highly recommend a second opinion and the Mayo Clinic was amazing and from what I understand treat the highest number of CC patients (their knowledge was amazing). You may not hear what you want to hear, but they are really good…I’ve also heard that Sloan Kettering (always known as a top cancer center) also has experience in CC. Definitely worth checking out.
So sorry you had to join us – but you will find an amazing amount of support here (and very quick responses).
tom
Hello Johanna…..I would like to follow everyone else in welcoming you to our site. With education and advice given by the great members on this site in addition to the clinical information available you will become stronger and face this disease head on. Many people have positive responses and there is absolutely no reason to think that you won’t be part of that group.
Therefore, continue to reach out and support will be coming your way.
I also want to mention a ongoing thread established by our members, which may aid you in the search for specialists with this disease. (In addition to those already mentioned above.)
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126
Hang in there…we are in this together.
Hugs
MarionHello Dianne,
I am thinking about going to Mayo. My husband is worried about me going to all these different places for opinions. I want to know all my options. If you saw me, you would not think I was sick at all (which I am thankful for). I am so glad I found this site. JohannaHi Johanna,
I was diagnosed at Mayo Clinic in Rochester in Jan. ’09. I saw a brilliant hepatologist, Dr. Gores, who recommended surgery. Dr. Nagorney, also brilliant, did the surgery a week or so later and I am doing pretty well. Mayo is one of the leading clinics to do liver transplants in certain cases of CC. I send you my very best wishes. This is very scary stuff, that’s for sure, but I hope you find a doctor to help you and things improve for you soon!
DianneHi Johanna, My husband was diagnosed in February of 2009. We went to the Liver Cancer Center in UPMC in Pittsburgh, Pa. Our surgeon there was Dr. Clark Gamblin but has just recently moved to Wisconsin to head the Liver Cancer Center there. I’m not sure which hospital but I’m sure he would be easy to find. We still go to UPMC but we now see Dr. Geller and I can tell you that I know with all my heart that Jeff would not be here with us today if it weren’t for the doctors there. Just to let you know we did go to Cleveland Clinic first but they gave us no hope for surgery or even any type of treatment. Just not the place to go for CC. I wish you the very best and will keep you in my prayers! Jenny
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