jim-wilde
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Son of a gun, Dr Kato was my surgeon. He’s extraordinary!
Here’s a link to info I posted about NY Presbyterian and Dr Kato:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126&p=4
Wow, what a wonderful story Andy. I had surgery and Gemzar and considered myself very lucky with this pernicious disease.
Good luck in the future.
It’s not a soap … could have fooled me! Lainy, they even tolerate my lame humor! What more could one want???
Just got the CA 19-9 from 2/7 … 19, I’ll take that any day!
Katja, I rely on my flock of lady doctors at NY Presbyterian:
Dr Sun Hi Lee, cardiologist is the leader of the bunch. I’ve known her for ten years. She is involved in ALL my care there and helps in decision making and selecting other doctors. I kid her about being my “loyal tour guide”. She was instrumental in diagnosing my CC, based on a routine liver function test with slightly over the reportable enzyme triggers. No other doctor even noticed, or had the wrong interpretation. I love her and she’s become a friend!
Dr Abby Siegel, oncologist. While I’ve only known her for the past few years, I continue to be impressed with her cancer knowledge. Her practice is limited to digestive diseases.
Dr. Angela DiMango, pulmonologist. This is the latest addition to my “flock”.
These ladies discuss my situation regularly, as needed. They’re all friends and the latter two encountered Dr. Lee at Columbia Medical School, where Dr Lee continues on the faculty in cardiology.
Kim, glad you’re still doing well.
The unusual things surrounding my surgery are my age (70 at the time), and cardiac condition (severe heart attack in 2001, followed by emergency by-pass and mitral valve repair at Columbia done by Mehmet Oz, another of CPMC’s superheroes. I had several VT (cardiac) events during the liver surgery, but both were handling by Dr. H. Thomas Lee, a anesthetist, who had been a cardiac anesthetist in an earlier life. I’ve been very fortunate!
This is a link to a NY Times article about one of Dr. Kato’s most challenging surgeries:
http://www.nytimes.com/2009/12/15/health/15surg.html?_r=1&scp=1&sq=Dr%20Kato%20surgery&st=cse
I just looked … same link as first post in this thread. My bad!
I had the same, left hepatic lobe resection, clean margins and the final pathology report was clean as well. My lovely cardiologist said “I want you to see an oncologist”. OK, did that. The oncologist, another lovely lady read the final path report somewhat differently than the surgeon. The pathologist had noted that some of the removed tissue was particularly aggressive. She said, if any of that material got loose during surgery, it could be bad. So she ordered six months of Gemzar, to start about two months after surgery. The downside of the chemo was I got no regrowth of the liver. That was about two years ago and so far, still clean.
From what I’ve casually observed, there’s no clear protocol for CC treatment. The oncologist pointed out when she ordered Gemzar, that there’s no clear evidence it’s effective against CC. For us as patients, you just have to trust the judgment of the professionals and not get too worked up when you see different protocols than yours that appear effective.
My biggest concern is about the surgical risk, rather than the growth, I guess because that’s more immediate. scragots, my growth has changed very little, but the doctor’s collective concern is that it will become inoperative due to proximity to the mammary artery. If that get’s damaged, it’s big trouble time since I have 35% cardiac muscle damage and cannot tolerate very much loss of function.
You just have to go on faith that the doctors have the necessary skills to deal with this stuff. This surgery “seems” simple, but I guess it’s not really. When I see the surgeon next, I will ask him to do a diagram, since I don’t fully understand the physiology. The surgeon , Dr. Joshua Sonett, did a scar tissue clean up on Bill Clinton, following Clinton’s by-pass surgery, so he comes highly recommended.
Thanks all for your kind wishes.
Lilack, look at the link Marions provides above. There are a number of outstanding places in the NY area.
I am from NJ, now living in MD. When my disease was unfolding several years ago, I wound up at Columbia Presbysterian (now called NY Presbyterian) because of cardiac connections I had there going back ten years. My experience there was great, but you have to make your own choice of course.
Good luck.
I am almost two years clean. I had a left hepatic lobe resection 4/09 followed by six months of Gemzar as a prophylactic measure. I had a PET scan 1/11, which didn’t show any clear CC recurrence, but was ordered due to a small lung growth. We’ll find out when the lung growth is removed (likely in May 09) what the CC deal is more clearly.
Not much in life style changes here (being a cardiac patient, I’ve been a clean liver for ten years). You know, no saturated fats, no salt, no fried foods, no red meat, go to the health club daily, etc, etc. In fact, when it comes to food, if it tastes good, I just spit it out.
I’ve got great LDL and HDL numbers from the combination of exercise and diet and my weight is about the same as when I was in high school (I’m 72).
I just hope that the pernicious CC doesn’t return!
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 Garcia4/8/09 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 done12/09 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.
I had surgery with Dr. T. Kato at NY Presbyterian in April 2009. Dr. Kato has done a lot of very complicated surgeries and transplants, and so far, saved my bacon. I had about 50% of the liver removed in a left hepatic lobe resection and the CC had not metastasized. So far, I’m clean except for a funky small lung growth, which may come out in May this year. The risk is proximity to the mammary artery, which was used in a cardiac bypass ten years ago.
Dr. Kato has operated successfully on many patients that were given no hope of a surgical fix. I’m sure there are some diagnoses that clearly aren’t amenable to surgery, but Dr. Kato is a very innovative and creative surgeon. Had he not been at NY Presb, there wasn’t another surgeon who who have operated on me at that hospital, for a variety of reasons … age, cardiac history, surgical difficulty, etc. All I can say, is the NY Presb Digestive Diseases Group did a heck of a job for me. franticmom, for me convenience was way down on the list of importance in selecting where to go (I live in Southern MD, about a 7 to 8 hour trip to NYC for the hospital. I would be happy to provide contact info if you’re interested.
mhelton, let me share a few thoughts. My wife and I had a conversation many years ago about what we should do in the event either of us should be faced with a serious medical issue. The conclusion we came to: convenience should be way down the list of criteria. We decided a serious condition would be faced with a serious hospital and doctor(s) (i.e. only large, teaching hospitals). Unfortunately for my wife, I have been the most frequent user of the policy! In 2001, I had a severe heart attack, which resulted in 35% damage and requiring an immediate surgery. At the time, we lived in central NJ and had a cath workup done there. Once we had the bad news, the next choice was where and who. Since this was not a routine cardiac surgery, I opted for NY Presbyterian Hospital and asked my wonderful NJ cardiologist who the best surgeon at NY Presb was. His response was Dr. Mehmet Oz (yes, the very same you might have seen on TV). Several days later, I was there and had surgery, which was completely successful.
On to cancer topics. We have now moved to Maryland. My wife had a routine breast cancer screening done at a small local hospital. They found some “attypical structures” which required a needle biopsy, which was inconclusive. At this point, we did some investigation and found that there’s a small number of NIH recommended cancer centers on the east coast, such as Mass General, Sloan Kettering, NY Presbyterian, Johns Hopkins, etc. We ended up going to John Hopkins. My wife had a surgical biopsy done by a surgeon who did nothing but breast cancers. Results came back negative, but we go to Hopkins once a year, where my wife participates in a high risk screening program. This is not terribly convenient (Johns Hopkins is in Baltimore, about three hours drive each way from home, but makes my wife confident she’s getting the best care.
My choice for my CC care was NY Presbyterian, even less convenient, but again a NIH cancer center. I realize that choice of doctors and hospitals is very personal, but with something like CC, you want the best care you can get that doesn’t grossly inconvenience you and the caregiver.
My point is, if you are not totally confident in the diagnosis or any other treatment aspect, I would get a second opinion from a teaching hospital. You can find major cancer centers from the NIH website. Good luck.
Jim
Kim, we live in Ocean Pines and have been here for the past eight years. We love it here, especially the quiet time of now through Memorial Day. Pretty soon the winter diving ducks will show up and entertain us through the cold weather. So sorry to see CC took your mother recently.
marions, I was blessed to have some very special doctors caring for me, especially Dr Lee, the cardiologist. I don’t see her all that often, but she’s always been there for me. She said after the surgery last year that someone was watching over me. I learned after the surgery from the OC, that no one else in the Digestive Diseases surgery group at NY Presbyterian other than Dr Kato would have taken me as a patient and he had only been at NY Presbyterian for six months when I encountered him. The more I learn, the more I realize how few Dr Kato’s there are in the world!
