Best Hospital/Neuro Oncologist for Grade 3 Oligodendroglioma?

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Best Hospital/Neuro Oncologist for Grade 3 Oligodendroglioma?

by hope4mon on Tue Nov 26, 2013 11:33 PM

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Hi all. I tried searching for recommendations but wasn't having any luck. My brother in law was just diagnosed with stage 3 olihodendroglioma. His neurosurgeon here in Nashville, very trusted Dr. Abram, says he can get 50% and then further treatment would be very helpful. Neuro Oncologist then said basically opposite, that it doesn't look good. Bil had a grade 2 Oligodendroglioma in the same place (left frontal lobe) 11 years ago. Same neurosurgeon who feels confident about this one completely removed the first one with surgery alone and until now there has been no reoccurance. So we are thinking we do surgery with Dr. Abram but then we want to find the best place/best neuro oncologist, no matter where that is to continue treatment. Anyone have a similar tumor and have experience/NO recommendations, etc.

RE: Best Hospital/Neuro Oncologist for Grade 3 Oligodendroglioma?

by hope4mon on Tue Nov 26, 2013 11:35 PM

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sorry that cut me off! 

We have heard Anderson MD, Duke, Mayo. Anyone care to share, especially if the oncologist was positive, honest, determined, aggressive but with quality of life in consideration? thanks so much.

RE: Best Hospital/Neuro Oncologist for Grade 3 Oligodendroglioma?

by karynk on Thu Nov 28, 2013 12:03 AM

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Hi there -

You may want to contact University Hospitals in Cleveland, if you are willing to travel.

NS- Andrew Sloan, MD http://www.uhhospitals.org/find-a-doctor/sloan-andrew-14934

NO- Lisa Rogers, DO http://www.uhhospitals.org/find-a-doctor/rogers-lisa-16689

Although my husband was with them for a short time before he died, it's an amazing team.  We also dealt with their epileptologist team - which was beyond amazing!  I have referred a few people to them, and have had good feedback.  My husband's tumor was a grade 3 Oligoastrocytoma.  

RE: Best Hospital/Neuro Oncologist for Grade 3 Oligodendroglioma?

by shariv on Thu Nov 28, 2013 02:06 AM

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Search for US News and World Report Best Hospitals. They have a list of the top hospitals in the country and you can search for neurology. You can click on the hospital to get more information. Here is the link:

http://health.usnews.com/best-hospitals/rankings/neurology-a

Johns Hopkins is #1. I go to Cleveland Clinic, and it's rated #6.

It's really important to go to a highly rated hospital with a brain tumor board.

RE: Best Hospital/Neuro Oncologist for Grade 3 Oligodendroglioma?

by karynk on Thu Nov 28, 2013 04:43 PM

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My husband was at the Cleveland Clinic for 6 yrs of treatment, so I have experience with both of the Cleveland hospitals.  Of the 2 I would recommend UH, hands down, everytime.

RE: Best Hospital/Neuro Oncologist for Grade 3 Oligodendroglioma?

by robflash on Sat Nov 30, 2013 04:21 AM

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On Nov 28, 2013 12:03 AM karynk wrote:

Hi there -

You may want to contact University Hospitals in Cleveland, if you are willing to travel.

NS- Andrew Sloan, MD http://www.uhhospitals.org/find-a-doctor/sloan-andrew-14934 "" target="_blank" rel="nofollow">http://www.uhhospitals.org/find-a-doctor/sloan-andrew-14934 " target="_blank" rel="nofollow">http://www.uhhospitals.org/find-a-doctor/sloan-andrew-14934

NO- Lisa Rogers, DO http://www.uhhospitals.org/find-a-doctor/rogers-lisa-16689 "" target="_blank" rel="nofollow">http://www.uhhospitals.org/find-a-doctor/rogers-lisa-16689 " target="_blank" rel="nofollow">http://www.uhhospitals.org/find-a-doctor/rogers-lisa-16689

Although my husband was with them for a short time before he died, it's an amazing team.  We also dealt with their epileptologist team - which was beyond amazing!  I have referred a few people to them, and have had good feedback.  My husband's tumor was a grade 3 Oligoastrocytoma.  

Hi Karynk, we have talked before with the troubles I have had with doctors.  up date we are currently switching to univesity from CC.  met Dr sloan.  My husband felt that he seem cocky ( I not sure if that is also because we where told that it couldnt be removed nd he said that it could and Rob is not to fond of the idea of brain surgery) I thought that he seemed confident.  We both agree that he was more personal and listened to us more than CC.  This was just a second opinion appointment.  he said that he would be happy to take over our case or stay 2nd opinion he could refer us to 3rd opinion if we would like.  But amost everything that i had been asking at CC He had brought up tp us.  example I asked what to look for if he has a seizure because he does strange noises and is unresponsive for 30-60 second at times are these seizure.  clinic said tumor to small to cause seizures.  Sloan asked if rob had been checked for seizure without us saying anything about it.  Sloan said that he thought that would have been checked if there was a question about it.  He agreed that the tumor should not be causing the headaches but said that if he is having seizures those could be causing headache.             the only thing that has me really angry is He said that he wishes that we would not have done the radation.  That he would have preferred to have done surgery then rad.  But we did not get the 2nd opionin then.  CC was are second opinion so we thought we were doing go and CC does have a good rating on brain cancer and there are some very good dr.  but there are some very bad doctors.     My family doc said that C Clinic is good for the treatment of the cancer but after care SUCKS.  and I plan on keeping my husband for a long time, so I need after care. 

My husband has oligo stage 2 so there is a review of 2 hospitals.  He has not had surgery other than biopsy with Dr barnette which I like very much Cleveland clinic and Dr Suh is radiation dr.  the NO Dr Rosenfeld is a horrible dr did not know why we there and dismissed all questions  (told me to pick 2 questions he did not have the time for all these silly questions it only stage 2 not really cancer.) He was suppost to be the leader of Rob's cancer team.  

University Hospital in Cleveland is treating us much better but I have only met with the one doctor so far.

I refer to Rob's cancer as our case and our disease,  because Although I know he is the one has cancer.  It effects both of us,  I have to find ways to relate and support him without making him feel any worse emotionally.  And I believe very strongly in marriage that we are 2 people live one life together So I do not mean to take anything from those of you who do have cancer I wish and hope you have someone to be with you that also feel like they are sharing this battle. 

XOXO to everyone dealing with our tumor,

-Sherry

RE: Best Hospital/Neuro Oncologist for Grade 3 Oligodendroglioma?

by robflash on Sat Nov 30, 2013 04:36 AM

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On Nov 28, 2013 2:06 AM shariv wrote:

Search for US News and World Report Best Hospitals. They have a list of the top hospitals in the country and you can search for neurology. You can click on the hospital to get more information. Here is the link:

http://health.usnews.com/best-hospitals/rankings/neurology-a nd-neurosurgery"" target="_blank" rel="nofollow">http://health.usnews.com/best-hospitals/rankings/neurology-a target="_blank" rel="nofollow">http://health.usnews.com/best-hospitals/rankings/neurology-a

Johns Hopkins is #1. I go to Cleveland Clinic, and it's rated #6.

It's really important to go to a highly rated hospital with a brain tumor board.

if you dont mind what kind of cancer do you have?  and who are your docs?  my husband goes there and we are switching.  not getting the care we need at this time.  (see other post)  he has oligodendrogloima grade2.  (like some of the doc and hate others.  the good ones dont make up for the bad so switching)

-sherry

RE: Best Hospital/Neuro Oncologist for Grade 3 Oligodendroglioma?

by karynk on Sat Nov 30, 2013 04:38 AM

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Hey Sherry!

Yes, I remember you and your husband's story.  I am so happy to hear that you went to UH and have seen Dr. Sloan.  Yes, he can come across as cocky (perhaps a little much to take on the first visit), but he sure is an amazing NS.  He is great at what he does, and I really don't expect a lot of warm fuzzys from an NS, but he does have a sense of humor and was very caring and compassionate with my husband's case.  Lisa Rogers, DO, who is the NO at UH....she is beyond amazing.  I have experience with most of the seizure team there too.

I was so weird when we switched over to UH, 2 hospitals just blocks apart from each other....completely different vibe to them.  And isn't Seidman AMAZING!!!  My husband didn't stay at Seidman when he was there, but my father did for prostate cancer last year.  I can't say enough about that place.  I actually wished we would have switched years earlier.

Let me know if you need anything info wise for the area or the hospital!

-Karyn

RE: Best Hospital/Neuro Oncologist for Grade 3 Oligodendroglioma?

by Bee_Rich on Mon Dec 02, 2013 04:06 AM

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I switched to Mayo-Jacksonville, Fla. I Like the NO / NS better than the Gainesville Shands NS dept, ever since the NO bailed to Piedmont and I was placed into General Oncology. Thanks but no thanks.

RE: Best Hospital/Neuro Oncologist for Grade 3 Oligodendroglioma?

by shariv on Mon Dec 02, 2013 04:40 AM

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I have a grade 3 oligodendroglioma. I've seen Dr. Stevens, but now I am seeing Dr. Peereboom. I can't remember my surgeon's name, but she was good. I've heard Dr. Barnett is really good. All of my doctors are great. They all spend as much time with me as I need, answer all of my questions etc. The first appointment was with Dr. Stevens and he spent a lot of time with us explaining everything that I had spent searching online for months because my local doctor didn't tell me anything. Can you ask to switch doctors? 

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