It occurred to me that we need a listing of preferred institutions and doctors by general area. I'll start with a few suggestions of my own, but please add your nominees in the comments and I'll edit the list accordingly. Once we get a good list going, I'll make a page out of it for easy reference at the top of the blog.
NORTH AMERICA - WEST
Institutions: UCLA (Los Angeles), Cedars-Sinai (Los Angeles), UCSF (San Francisco), Swedish Medical Center (Seattle)
Neurosurgeons: Linda Liau (UCLA), Mitchel Berger (UCSF), Keith Black (Cedars-Sinai), Charles Cobbs (Swedish), Brian Toyota (Vancouver, Canada),
Neuro-oncologists: Timothy Cloughesy (UCLA), Albert Lai (UCLA), Santosh Kesari (John Wayne Cancer Institute at Providence Saint John's Health Center), Jethro Hu (Cedars-Sinai)
NORTH AMERICA - EAST
Institutions: Duke University (North Carolina), University of Florida (Gainesville), Dana-Farber Cancer Institute (Boston), Beth Israel Deaconess Medical Center (Boston), Massachusetts General Hospital (Boston), Cleveland Clinic, Memorial Sloan Kettering Cancer Center (New York), Johns Hopkins Hospital (Baltimore)
Neurosurgeons: Allan Friedman (Duke), John Boockvar (Lenox Hill Hospital, New York),
Neuro-oncologists: Roger Stupp (Northwestern), Eric Wong (Beth Israel Deaconess), Benjamin Purow (University of Virginia)
EUROPE
Institutions: German Cancer Research Center - DKFZ Heidelberg
Neuro-surgeons: Hugues Duffau (Neurosciences Institute of Montpellier, France; supratotal resection of low grade gliomas)
Very nice idea!
ReplyDeleteI did a lot of research on neurosurgeons, since doctors in my country wanted watch and wait approach. I found dr. Hugues Duffau from Montpellier, France. I think he is one of the leading neurosurgeons in the world - has a lot of awards and was also suggested to me by dr. Patrick J. Kelly (kind of authority in the fields of brain tumor surgery, founder and president of the Brain Tumor Foundation).
I think there are also some dr. Duffau's retrospective studies in Stephen's library.
Although I don't know how much he is involved with GMB tumors, he has a lot of experience with low grade gliomas.
My experience with him:
Underwent gross total resection of my low grade oligodendroglioma with awake brain surgery, without any deficits after surgery. He is a big supported and I think even pioneer of supratotal resection - resection of the tumor with safety margin (if possible) of healthy tissue around the tumor. I think that's why in one of his retrospective studies there is around 50% people recurrence free of their low grade glioma after median follow up around 12 years.
Without personal experience, but on the basis of some general knowledge, I'd recommend Memorial Sloan Kettering in NYC.
ReplyDeleteFrom personal experience, I'd recommend Johns Hopkins as an institution.
Within Ho;kins, I'd certainly recommend Kaisorn Chaichana, MD as a neurosurgeon.
Stephen-
ReplyDeleteThis is really great idea.
Duke. Do you mean HENRY Friedman at Duke?
Mark Souweidane did an amazing job on our 5 year old daughter with a GBM. Great bedside manner too.
Winston
Brooklyn
I know it's confusing - there's two Friedmans at Duke. Allan is a neurosurgeon, Henry is a neuro-oncologist.
DeleteI have experience with both Henry and Allan; I found them both to be elite. Canadian-American Annick Desjardin is a neuro-oncologist and is very much one of the doctors primarily responsible for the ground breaking polio vaccine research, specifically for the advancement of the trial to Phase II/III without any new control group required. She is responsible for the research it took to use historical data for trial study control.
DeleteStephen - thank you very much, brilliant idea as always.
DeleteWe are currently considering switching to Dr. Henry Friedman at Duke as he sounds open-minded to us. You do not seem to recommend him?
It's not that I don't recommend him. I'm sure there are many very good neurosurgeons and oncologists I haven't included mainly because I'm not overly familiar with them. I just wanted to start the list with a few doctors I was more familiar with, and let other contributors help fill it out.
DeleteUCSF neurosurgeon Mitch Berger
ReplyDeleteUCSF Neuron-oncology
My husband had two gross total resections by Dr. Michael Sisti at Columbia in NYC, widely regarded as one of the two top brain surgeons in New York. Neuro-oncologist is Dr. Fabio Iwamoto who is brilliant, compassionate and unfailingly responsive. Iwamoto is familiar with all the clinical trials nationwide, not just his own.
ReplyDeleteTakanori Fukushima Brain Institute in Europe, Italy
ReplyDeleteNice people.
Skull base surgery.
I had a very successful gross Resection by NS Dr Sanchez at Scripps Green Hospital in San Diego and excellent NO care by Dr David Piccino at UCSD Moores Cancer Center
ReplyDeleteMarc
I am being treated by Dr Fabio Iwamoto at Columbia in NYC. He is hugely knowledgeable, empathetic and ambitious for his patients. I can't recommend him highly enough.
ReplyDeleteMiddle East:
ReplyDeleteNeurosurgeons: Dr. Youssef Comair (Clemenceau Medical Center, Beirut, Lebanon), Dr. Imad N. Kanaan (King Faisal Specialist Hospital and Research Center, Riyadh, KSA)
Oncologist: Fadlo Khuri (American University of Beirut Medical Center, Lebanon - consults occasionally)
Sadly, we do not have neuro-oncologists nor dedicated facilities here yet.
For radiation oncology, I would recommend Dr. Anita Mahajan from MDA for her brilliance and care.
There is a similar thread on cancer compass:
https://www.cancercompass.com/message-board/message/all,70037,3.htm
Thanks Meer, I'm glad for your contribution that expands the geographic scope of this thread. Thanks also for the link, good to have that link within this thread too.
DeleteMy husband has had two surgeries at UW Madison. He has a thalamic tumor with a H3.3K27M mutation. The neurosurgeons have been amazing but the medical oncologist leaves a lot to be desired. The first surgery with 90% resection was by Dr Iskandar, who is a pediatric neurosurgeon, long story but it was an emergency surgery. The second was by Dr Baskaya; 70% resection. A gret place to come if someone says it unoperable.
ReplyDeleteChelsea -
ReplyDeleteMy dad was recently diagnosed with GBM and is being treated at Madison as well. Dr. Niemann for surgery. Just met with Dr. Howard for Rad Onc, and hasn't met with Med Onc yet. Would love to hear more detail about what he leaves to be desired. Thanks!
Dr. Howard, radiation oncologist, is awesome. He really cares, is smart, and will always be honest. Dr Robins, medical oncologist, is very rigid and (in my opinion) refuses to do any real critical thinking. At one point he said that "he wasn't taught that way of doing things" as an explanation for why he won't offer more than one treatment at a time. He is very old school. I like the UW and we will still continue some treatments there but do not expect anything truly novel to be offered. Do your own research. Email me at north.vicki@yahoo.com if you want to talk more.
ReplyDeleteAustralian Neuro Oncologist..Does anyone have any recommendations?
ReplyDeleteCan I ask which city?
DeleteWe live regional NSW. Sydney is the closest city
ReplyDelete