jim-wilde

I would contact Dr. Kato today if your dad were my father. Complete contact info including his secretary are at the end of the ‘hospitals’ link below my name. His secretary, Delia, will be very helpful and make sure she knows you will be traveling from a distant place, so she will know the impact a re-schedule might have on you. I can’t answer your medical questions, but Dr. Kato surely can. You will find him a kind, humble and very caring man, but he’s also a giant in his field. BTW, Dr. Kato has written tons of research papers and is likely the only US surgeon doing what is known as ex-vivo procedures, where the affected organs, cancer masses are removed from the body, and the re-useable parts transplanted back to the patient. Presbyterian is associated with Columbia Uinversity Medical School and surgeons (and many others) are on the teaching faculty besides their surgical duties. In fact, until several years ago, the hospital was known as Columbia Presbyterian for many years. Loads of research is done there in many fields.

I know the feeling of being overwhelmed, but don’t let it keep you from action once you have decided on a course. Good luck and bless you for being the caring son and advocate for your dad.

Let us know how you make out.

Donna, welcome and sorry you have to join us. Time may be critical to the available options in treating cc. I live on the Eastern Shore in MD and ended up being treated at NY Presbyterian in NYC, and from my perspective with the awful disease, it was the right place, in spite of inconvenience. Long story short, I had a successful resection almost two years ago, and am still cancer free, but looking over my shoulder as each CT scan comes up. Dr. Kato was my surgeon, and it would be hard to find a more caring and skilled surgeon anywhere. CC is a tough disease, but not without hope. Dr. Kato’s forte is taking challenging cases other surgeons won’t take, but he won’t operate if there’s no chance of success, in his opinion. There is a summary under the hospitals link under my name of my experience with NY Presbyterian.

You will find another poster here, Kim Cirucci, who had a much more challenging surgery with Dr. Kato. She lives in South Jersey and her story is here under “My Inspirational Story”.

You will find, because cc is so rare, the very best care is limited to big city/major cancer centers, as there are only around 2000 cases diagnosed in the US per year.

Whatever you decide, try to get a game plan in place quickly, as time is your enemy. And be prepared to ask lots of questions. You must be a blessing to you brother, since most patients are in a state of shock and not capable of informed research. Every patient needs a good advocate, and you sound like a good one.

Best of luck and come back here with questions/concerns when ever you want. Bless you on a tough mission.

Sorry you had to find us, but I think you will find a supportive group here. Tim, where are you located?

This disease is rare (fewer than 2000 cases diagnosed per yr in the US) and because of that, the best treatment is found in big city/major cancer centers. See the links below my name for more info there.

My circumstances were similar to you dad’s, except I have some significant cardiac issues. In any case, I was successfully operated on almost two years ago by Dr. Tomoaki Kato, a miracle worker at NY Presbyterian in NYC, nowhere near where I live (about a 7 hour car ride). That was clearly the right place for me to be.

Hopefully, your father will be a candidate for surgery, as that presents the best chance for a ‘cure’ from this nasty disease.

Each of the hospitals has it’s own routines for medical info, and most want to do their own scans, etc. That was my case. I had a CT scan done in MD, but the doctor wanted more scans done at NY Presbyterian. The good news was they maintain all the diagnostic data on-line and any doctor at that hospital can see the scans, reports, etc. in a heart beat.

I would suggest getting a game plan in place quickly, as time is your enemy here ,,, some instances of cc progress slowly and some very quickly. Keep the questions coming … there are lots of really helpful and smart people here.

Good luck in your quest and I hope and pray for a good outcome with your dad.

Been doing that for years as a post cardiac person. If it tastes good, spit it out (all the best foods, of course).

There is some feeble hope, though. I’ve found non-alcoholic beers aren’t too bad, and Coors is actually good. I do miss the wine with a meal. But, can’t have it all.

Just so some don’t get panicky, regeneration doesn’t always happen. Mine did not, probably due primarily that I had chemo within two months of a resection. Not surprisingly, almost no cell growth occurs during chemo, and this includes wound healing as well. Almost two years later, no regeneration. Regeneration is also a function of patient age, and that didn’t help me at all and older patients experience slower regeneration. The good news: Ive got a 50% liver that’s working perfectly.

Linda, sorry you had to join us here. Try to get a game plan in place quickly and understand because CC is rare you may need to go somewhere inconvenient for treatment because the success chances are much better at the major big city cancer centers. You want to find people whom have dealt with many cc cases. Time is your enemy here until you have a plan in place. The links under my name point to US doctors/hospitals which you may find useful. I’m assuming you are in the US, which may be a rash assumption.

Good luck in you quest for care for your Dad.

No, I was very fortunate, it had not metastasized and I’ve been clean so far. I was left with 50% of my liver, which was the minimum Dr. Kato wanted to see. I had chemo following surgery (six months of Gemzar), but not before. I think you would be impressed with NYP’s Digestive Diseases group. They do a ton of liver transplants and complex surgeries. This link provides are very brief summary of Dr. Kato’s experience:
http://nyp.org/FPHTML/physician/tkato/

BTW, his secretary is Delia Garcia. Dr. Kato was a real prince to deal with.