GIST Support WikiI saw Ron DeMatteo at Sloan Kettering for my liver surgery in April he was excellent and is the GIST expert at Sloan.
I found that MSKCC was extremely caring and professional. I do not know Dr.Singer, but he has an excellent reputation. Dr DeMatteo is the finest person and doctor I have ever met.
They definitely know what they are doing at MSKCC,and I would not go any where else!! The staff in the hospital is wonderful. I am sorry that you had a bad experience, but do not judge MSKCC on this one experience. I think you are making a mistake if you go anywhere else.
I had a bad experience with Dr George, but other people think she is wonderful,so I guess everyone can have a bad day, but believe me you will not find any finer care than at MSKCC. I know this from experience.
M.K. sister of E.E.M. surgery at MSKCC July,2006
When I emailed Dr DeMatteo (whom we had never met), he emailed me back immediately (even though he was on vacation). He said to send her scans. When he got them, he said to come right away. We flew by air ambulance.(By the way it took two years to get medicare to pay for the private flight, but we would have spent the money to save her life any way!) She arrived safe and sound to New York and was transferred to the hospital. All the time she was attached to a tube draining the tumor of blood!
The surgery was long and hard! Most surgeons would have walked away! My sister has had two great years since that surgery. Dr DeMatteo reviews her scans every three months. One day I emailed him with a question,and I had an answer back in 5 minutes.
When we arrived in New York,he visited her immedately in the hospital even though it was July 4th. All of his staff and all of the hospital staff was wonderful, and they gave my sister excellent care.
She also has epilepsy and we have been in many hospital so we have al alot of experience in hospitals. This was the best experience!!! MSKCC IS GREAT!!!!!!!
We have been back to New York to see both Dr DeMatteo and Dr Maki. They were both wonderful to my sister. Dr DeMatteo"s nurse has called on her own to ask how my sister is doing.
Even the door man is caring at the clinic where we go for office visits. He always says a kind word!! For New York,this was a pleasant surprise! Good Luck!!!
I LOVE NEW YORK AND MSKCC!!!!!!!! M.K. Sister of E.E.M.
I go to MSKCC every four months and see Dr. Maki. The hospital all in all is very careing and very professional.
I must say if I would have listened to Dr. Singer's advice and waited till I was off Gleevec(which I will not be for a long time), I might not be around today. So I have no respect for Dr. Singer what so ever, and am glad that I persued my problem with another surgeon who saved my life. She even stated if I would have waited a couple of more months I would have been in real big trouble.
Sincerely Yours, N.F.
I've been a patient of Dr. Maki, Dr. Singer, Dr. DeMatteo, and Dr. Alago, at MSKCC, and they have been the most caring, informative, and reliable doctors anyone could ask for. Your sister is in the best of hands at MSKCC.........
L.C.
Memorial Sloan Kettering Cancer Center, New York
Dr. Vivian Strong, Surgeon
http://www.mskcc.org/prg/prg/bios/903.cfm
GSI received a call from NJ. The caller's husband had gone to MSK and seen a doctor that they were told by MSK was a GIST expert... Dr. Vivian Strong. She related that they waited for 5 hours to be seen for their appointment. Then were told that it would take 3 months to assess his situation. He had a HUGE tumor and they decided that he couldn't wait so went to another facility and he had immediate surgery.
Hi "Donna From Montana," Surely, go ahead and post what I had to say in my email along with my initials.....that is fine with me. Thanks for your interest as always, A. G. from NJ
When I moved from CT to NJ, I had to switch doctors and after many recommendations to see Dr. Maki I went ahead and made the appt. at Sloan to meet him and have my initial consultation. I feel he is so knowledgeable and has a nice "bedside manner." They were all very helpful at Sloan and treated me with the utmost respect and care. The "Care Nurses" are very friendly and don't keep you waiting. They are very attentive and always call you back. I would say go with Dr. Maki.....you will be given the best of care and be in excellent hands. Good Luck to you and keep the faith. Stay positive and be well, A. G. from NJ
By all means, Donna (copy post) ! It would be hard for us to say enough good things about Dr. DeMatteo.
Dean the GISTer, had such a good experience with his liver mets surgeon, Dr. Ron DeMatteo at MSKCC. The first time we went to see him, not sure that we would have the surgery there, first in came two of his residents, who completely and accurately recited by memory Dean's entire GIST history (this was 2006 and the history went back to 1999). Then, in came Dr. DeMatteo, who proceeded to also recite accurately by memory Dean's entire GIST history. They had only had all of Dean's history info for 24 hours! This was the first of many things that told us we were now in the hands of real and caring experts. When we left that day, Dr. DeMatteo was hunched over a table covered with Dean's history materials, seriously studying. We live in Michigan, so having the surgery at MSKCC was unnerving for us. But it just went so smoothly. No complications. Dean was released to fly back to Michigan on day 5 after his liver resection. When we went to Dean's 1999 surgeon here afterwards, he was nice enough to let us see how astounded he was at a number of things about the surgery, the first being how soon Dean was able to leave the hospital - said he had never seen that before. Dean had no drainage tubes at all. Dr. DeMatteo used a different type of incision than they still use here. The surgery only took about 3 1/2 hours. All of the surgical staples were able to be removed on day 8 after surgery because the healing was so good. Dean just healed and recovered steadily. Also, MSKCC just opened 20+ completely renovated operating rooms in spring 2006. Dean said he thought he was in the Houston Space Center when he walked into the OR the morning of his surgery! The hospital itself is old, but clean, and the staff was extremely competent. Dr. DeMatteo came in every single day, even the weekend, as did his residents. I know that others have had wonderful experiences at other top GIST centers like Fox Chase, Dana Farber, OHSU and M. D. Anderson. Please do give serious thought to consulting with these outstanding doctors. Also, we were told at the University of Michigan that standard practice is to take Gleevec to see if it will shrink the tumor, with the time frame being 6 months, possibly less. Dean's liver mets went from cantaloupe size to orange size from March to November 2006 on 400 mg Gleevec. Then, the U of M tumor board said it was time to operate and Dr. DeMatteo agreed.Diane Schmitz