I haven't logged on to this site in a very long time because we have just been getting on with our lives after very successful treatment of cholangiocarcinoma for my husband almost 6 years ago.
Our surgeon at M. D. Anderson was Dr. Jason Fleming, and Dr. Javle was his oncologist.
We live only 40 miles from the hospital, so for us it was a no-brainer to go there. However, I cannot praise the whole hospital staff enough for the whole experience. We never once felt as if we were an anonymous patient, and that we were an integral part of the whole team. We were listened to, and our thoughts and desires were always included in the process. I'm not saying we weren't occasionally overruled, but it was NEVER a case of being talked-down to. Now that being said, I must clarify that my dad was a hospital administrator, my mother was a secretary to the dean of a nursing school at a university, my sister is an diagnostic RN, and we had a brother who was paralyzed from the neck down in an accident in the Viet Nam war and then lived at home with us for 28 years before passing from cancer himself. I have no hesitation letting medical people know this about me, and I do think it does change how we are treated. I don't pretend to know as much as the doctors or nurses, but I do let them know I'm not totally ignorant about medical stuff and that I do my research and ask intelligent questions.
To anyone researching any hospital for themselves or their loved ones, I would say this: research, research, research. You may have to do this very fast, so thank heaven for the internet! If you are facing a Whipple, you want the place and/or person who has performed the most, within the constraints of your budget, ability to travel to that place, and support system in place for you and your family. There will be differences in opinion and methods of treatment among these doctors, because they are different people just as we all are. You may have to ask questions - so ask!! It won't offend them. And if it does, then decide if that matters to you.
While the medical treatment is the primary concern, don't overlook the support system in place for the caregiver and family. Some places are definitely better at this than others. And a caregiver who is overwhelmed and burning out from the demands now on them can't take care of the patient well.
Since going through our journey, Richard & I have become certified counselors with CanCare. It is a non-denominational, faith-based organization which matches a cancer patient (any kind of cancer) with someone else who has had/is still dealing with that exact kind of cancer. They may still be battling the disease, but usually are much further along the road on the journey than the patient. What they do that is so special, though, is that they will match the caregiver with another caregiver, too. It is so wonderful to have someone to talk to who has been in your shoes and is still standing! Not to mention just having someone to talk to. Your family and friends love you and want to help - and many do, in countless ways - but they can't understand completely the path you are walking. Being able to talk to someone who has been there, and come through, is a lifesaver. CanCare is free and online at www.cancare.org if anyone is interested.
I just can't get back here as frequently as I would like, so if there are any questions I can answer for anyone, please email me at cinschmerb at gmail.com. (Written this way instead of traditional way in order to avoid scammers.)