Is Dr. Woltering the best doctor for Carcinoid?

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Is Dr. Woltering the best doctor for Carcinoid?

by Meg412 on Thu Oct 01, 2009 12:00 AM

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Hello!

My mom was diagnosed in 2004 with carcinoid cancer. We live in SC and have been treated at a local cancer center, MD Anderson and at MUSC. We are currently at MUSC and have been on the RAD001 clinical trial for over a year. My mom has carcinoid syndrome and carcinoid heart disease. Last week her oncologist suggested supportive care. We are not ready to just put our hands up and surrender. What doctors should we see? I've read a lot about Woltering and Warner but don't know who to see. Thanks for any help.

 

Meg

RE: Is Dr. Woltering the best doctor for Carcinoid?

by diannaboom on Thu Oct 01, 2009 12:00 AM

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 Dear Meg,

I am a patient of Dr. Woltering and the Neuroendocrine Tumor Clinic at LSU Ochsner Kenner in New Orleans so I'm rather prejudiced, but .  Dr. Woltering and his team can cover all kinds of involvement with carcinoid and neuroendocrine cancers.  They have specialists available for many disciplines including cardiology and have been able to help many survivors who have been deemed inoperable or terminal by others.  Their advantage is that they see hundreds of carcinoid and neuroendocrine cancer patients annually...the clinic there always has a waiting room full of us NETs!  They just have more experience than most and are considered an "aggressive" team...in other words they just don't give up until all options are exhausted!

You can contact Dr. Woltering for an evaluation at the following numbers:


504-464-8500- clinic appointments

504-464-8525-clinic fax


Eugene A. Woltering MD FACS The James D. Rives Professor of Surgery and Neurosciences


LSUHSC Department of Surgery

Ochsner Medical Center
Clinic address:
200 West Esplanade Ave, Suite 200
Kenner La 70065
USA
Email: ewolte@lsuhsc.edu
or if all that fails: try his cell phone 504-884-3555


On 10/1/2009 Meg412 wrote:

Hello!

My mom was diagnosed in 2004 with carcinoid cancer. We live in SC and have been treated at a local cancer center, MD Anderson and at MUSC. We are currently at MUSC and have been on the RAD001 clinical trial for over a year. My mom has carcinoid syndrome and carcinoid heart disease. Last week her oncologist suggested supportive care. We are not ready to just put our hands up and surrender. What doctors should we see? I've read a lot about Woltering and Warner but don't know who to see. Thanks for any help.

 

Meg


 

RE: Is Dr. Woltering the best doctor for Carcinoid?

by rn460 on Thu Oct 15, 2009 12:00 AM

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I am so sorry to hear about your mother. I was dianosed with carcinoid cancer at 29 a yr ago next month. I go to Sloan in NYC and see Dr. Saltz. I have never heard of this doctor you are asking about. I would reccomend you go to http://www.caringforcarcinoid.org/ this happens to be a excellent website where you can also find doctors in your area. Please let us know what happens. I wish you all the best!

 

RE: Is Dr. Woltering the best doctor for Carcinoid?

by CarcinoidJohn on Fri Feb 05, 2010 03:19 AM

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On Oct 01, 2009 12:00 AM Meg412 wrote:

Hello!

My mom was diagnosed in 2004 with carcinoid cancer. We live in SC and have been treated at a local cancer center, MD Anderson and at MUSC. We are currently at MUSC and have been on the RAD001 clinical trial for over a year. My mom has carcinoid syndrome and carcinoid heart disease. Last week her oncologist suggested supportive care. We are not ready to just put our hands up and surrender. What doctors should we see? I've read a lot about Woltering and Warner but don't know who to see. Thanks for any help.

 

Meg

I was diagnosed in 2009 and treated by Dr. Larry Kvols at Moffitt Cancer Center in Tampa Florida. Check the research on carcinoid and look for the names of the researchers. Dr. Kvols and the other names listed on this blog are all involved. I know that Dr. Kvols nailed my care plan and he sent me to Mayo Clinic In rochester minnesota for carcinoid heart repair. Dr Hartzell Schaff and Dr. Heidi Connolley are very good. They also have performed the greatest number of cardiac surgeries. I am doing great. By the way there is a new treatment in Holland that Dr. Kvols advocates..good results so far. I have a friend that MD Anderson sent to Dr. Kvols. She is going to Holland for DNA therapy. The FDA has not yet approved the treatment for the Holland therapy. My friend is not going to give up, she is going to Holland. Remember, there are many kinds of Carcinoid. We need to know that there are many very good Doctors but God has all the answers, ask Him where to go but I dont think He wants you to give up.

CarcinoidJohn

RE: Is Dr. Woltering the best doctor for Carcinoid?

by snmm2367 on Tue Feb 23, 2010 06:47 PM

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On Oct 01, 2009 12:00 AM Meg412 wrote:

Hello!

My mom was diagnosed in 2004 with carcinoid cancer. We live in SC and have been treated at a local cancer center, MD Anderson and at MUSC. We are currently at MUSC and have been on the RAD001 clinical trial for over a year. My mom has carcinoid syndrome and carcinoid heart disease. Last week her oncologist suggested supportive care. We are not ready to just put our hands up and surrender. What doctors should we see? I've read a lot about Woltering and Warner but don't know who to see. Thanks for any help.

 

Meg

Meg;

I have seem them all and "?the best" is a relative term and based on the current experience of the patient. All of the md's you mention are well respected in the carcinoid community and leaders in the filed.

I am currently working with dr richard baum in bad berka clinic in germany! I am very impressed by his expertise and calling out a number of issues in my first visit prior to scans and tests.

I am undergoing prrt at the moment under his direction, see my blog if interested in learning about prrt therapy and results- not only for me but on studies i have posted.

An md that is works wtih him is dr ordisio in iowa, and dr shah in osu also dr botha in unebraska. I believe the others also refer to other prrt sites such as basel, uppsala (dr yao), etc.

Prrt should be something you mother should consider now,.,,,she is too young (so am i!)

www.renalcarcnoid.com

 

Good luck and thanks for taking care of your mom!

 

 

RE: Is Dr. Woltering the best doctor for Carcinoid?

by atl8490 on Thu Oct 14, 2010 01:34 AM

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Hi Meg!

So sorry to hear about your mom. Will be thinking of her.

I just wanted to post as I have been - and still am - trying to find the "best" to see! I have tried a number of local doctors and none are really helpful (some are just simply too clueless, others aren't willing to learn about a rare disease, and some have said I am too young to be aggressively treated - was diagnosed 2 years at age 34).

I just wanted to share my experience with you - Many people I have met and corresponded with have had good experiences with Dr. Woltering, so I went to Kenner to see him myself. Unfortunately, I did not have a good experience at all. I was more disheartened after that visit than I think at any time (maybe even when I heard my diagnosis) just because I had heard good things and was counting on finally being treated. No such luck. You can certainly keep him in mind and try seeing him, but please just go in to it "realistically".

Also, just a caution for you: please do not let him (or anyone for that matter) suggest Dr. Vinnik (Norfolk, VA - EVMS). He was absolutely unprofessional and horrid. AFTER seeing him (of course), I heard from others about similar experiences with him. Please be careful!

Best of luck finding someone you are really comfortable with and that can provide the best care. If you find someone good, please let me know! :)

Take care,

RE: Is Dr. Woltering the best doctor for Carcinoid?

by Katsen57 on Thu Oct 14, 2010 06:11 PM

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On Oct 15, 2009 12:00 AM rn460 wrote:

I am so sorry to hear about your mother. I was dianosed with carcinoid cancer at 29 a yr ago next month. I go to Sloan in NYC and see Dr. Saltz. I have never heard of this doctor you are asking about. I would reccomend you go to http://www.caringforcarcinoid.org/ this "" target="_blank" rel="nofollow">http://www.caringforcarcinoid.org/ this " target="_blank" rel="nofollow">http://www.caringforcarcinoid.org/ this happens to be a excellent website where you can also find doctors in your area. Please let us know what happens. I wish you all the best!

 

Dear rn460, Sorry to hear about your troubles. Has Dr. Saltz done surgery on you yet?  Do not let him tell you into "Wait and See"  (I only ask this because he is well known for not treating Carcinoid with anything, no surgery or even sandostatin) Don't get me wrong, He may be great at treating other cancers but not carcinoid.

Case in point:  There is a gentleman in my support group who went to him and he told him not to worry about it and did nothing to treat his Carcinoid and for years he suffered with severe flushing a diarrhea.  With his brothers urging he found a support group and everyone who was there said he was literally PURPLE from the constant flushing. And because he was not treated he had to have his heart valves replaced.  Twice!  I havent seen him in a while but last I saw he was OK,  But if Dr. Saltz is not treating you please run, dont walk to another Carcinoid Dr. Your life depends on it. 

Surgery and "Debulking" and getting on Sando to supress the symptoms is probably the best thing to get rid of this cancer. I wish you only peace of mind. No one is too young to get surgery. If you think about it you are stronger and would recover better and faster than an older person. I was DX @ 40 and recovered fine.

Many blessings!  Katsen57

RE: Is Dr. Woltering the best doctor for Carcinoid?

by SBIBG on Mon Apr 30, 2012 08:36 PM

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On Feb 23, 2010 6:47 PM snmm2367 wrote:

On Oct 01, 2009 12:00 AM Meg412 wrote:

Hello!

My mom was diagnosed in 2004 with carcinoid cancer. We live in SC and have been treated at a local cancer center, MD Anderson and at MUSC. We are currently at MUSC and have been on the RAD001 clinical trial for over a year. My mom has carcinoid syndrome and carcinoid heart disease. Last week her oncologist suggested supportive care. We are not ready to just put our hands up and surrender. What doctors should we see? I've read a lot about Woltering and Warner but don't know who to see. Thanks for any help.

 

Meg

Meg;

I have seem them all and "?the best" is a relative term and based on the current experience of the patient. All of the md's you mention are well respected in the carcinoid community and leaders in the filed.

I am currently working with dr richard baum in bad berka clinic in germany! I am very impressed by his expertise and calling out a number of issues in my first visit prior to scans and tests.

I am undergoing prrt at the moment under his direction, see my blog if interested in learning about prrt therapy and results- not only for me but on studies i have posted.

An md that is works wtih him is dr ordisio in iowa, and dr shah in osu also dr botha in unebraska. I believe the others also refer to other prrt sites such as basel, uppsala (dr yao), etc.

Prrt should be something you mother should consider now,.,,,she is too young (so am i!)

www.renalcarcnoid.com

 

Good luck and thanks for taking care of your mom!

 

 

What is prrt?

RE: Is Dr. Woltering the best doctor for Carcinoid?

by lonniej on Mon Jun 25, 2012 08:32 PM

Quote | Reply

I haven't seen his name brought up very often here and perhaps he is not practicing anymore but Dr Lowell Anthony (LSU) was very helpful to us.

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