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Cleveland Clinic?

9 years 8 months ago #24542 by deand
Good feedback from both of you. Thanks.

I am just going to sit back, get the TUIP and TURB done and figure out just what the heck I am dealing with. Once I get the path labs back and know exactly what I am dealing with, I will then make a decision on where to get treatment and if that means going to Cleveland or USC, then so be it. Hell, if that meant going to Mars I will do it. I need people who are experts in the field and have seen it all, not to be some experiement for a doc's ego....

The only thing I can control in this disease is me and my plan....

Thanks to all.

Dean

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9 years 8 months ago #24539 by Patricia
ooooooooh Sara Anne....i know a lot of top bladder cancer specialists that would be pretty upset to think they are over the hill with 20 yrs of experience...If they are with a top cancer center or medical center you can bet that they are practicing their trade on a regular basis.....and being of a certain age is not a deterent to skill.....they are teaching the younger ones.
So i guess we should throw out Dr. Lamm, Dr. Herr, Dr. Schoenberg, Dr. Lange, Dr. Gill, and the list goes on........
Anyway deand...its one thing to do TURBs and TUIP's..its another to do major surgery and if someone is in a private practice they are not doing surgery on a regualar basis. And as far as females are concerned......thats even trickier if you wish to be informed and have the best at reconstruction if it should come to that......i hope it doesn't. If your doctor only does 3 female reconstructions a year....i'd have to think about that. The top guys are doing 60 to 90 plus a year.
And no there is no place to go to get referrals but the stars are pretty well known in the field as are the institutions. ... and we do know who they are. Pat

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9 years 8 months ago #24537 by sara.anne
I don't know of your uro personally, but Swedish is a good hospital and Seattle is in the midst of a lot of excellent medical facilities. IF your uro is relatively young (ie, not stuck in the medical world of 20 years ago) and treats a number of bladder cancer patients, and you have a good relationship with him/her, you are lucky to be able to stay at home. Another good test is if he discusses your questions and respects your interest in finding out more about your disease (some doctors get really upset if their patients go to sites such as this...mine welcomes it.)

Places such as the Cleveland Clinic are great for a. people with complicated cases and b. people who live where there are no resources such as you have in Seattle.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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9 years 8 months ago #24535 by deand
AWESOME! Thanks for that. I have a buddy that is a professor at USC so maybe, depending on the diagnosis, I may try to change to be attended there...

So, anybody have a web resource where you can check your surgeon out? Any feedback sites or anything like that that you would be willing to share.

My surgeon is Dr John Mullen from Swedish Hospital:

http://www.swedish.org/body.cfm?xyzpdqabc=0&id=6&action=detail&ref=670&HC1=%2D%20blank%20%2D&HC2=%2D%20blank%20%2D&HC3=%2D%20blank%20%2D

He looks ALOT younger in this picture then he really is. I think he is around 38 and is Harvard trained. He came highly recommended by my primary care doc and does a ton of urology/BC surgery. I spoke to his surgeon scheduling assistant and he told me that Dr. Mullen does alot of bladder TURBs and prostate TUIPs. I kind of like the younger docs, more aggressive, more up on recent changes and procedures plus he has a really good bedside manner. Just a really approachable, honest guy.

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9 years 8 months ago #24527 by Patricia
deand.....The Cleveland Clinic is brought up frequently as it is the #2 Urological Center in the country......Johns Hopkins is #1. Both have extensive experience with bladder cancer as you might imagine. I personally had my surgery done there by Dr. Inderbir Gill who is one of the few and possibly the most renowned surgeon that can do it laproscopically. He is now head of USC/Norris in LA. There are many good surgeons around the country that deal with bladder cancer...and a few that deal with women in particular.
You have a good doctor out there in Washington at the U of Washington..Dr. Lange
http://medical.washington.edu/bios/view.aspx?CentralId=16036
There's a great one up in Portland Oregon Dr. Daneshmand
http://www.ohsu.edu/health/meet-our-staff/doctors/doctor.cfm?id=11019
In California USC/Norris is tops as is UCSF........
You just want to make sure you are with someone who sees a lot of bladder cancer. Don't jump the gun yet but if you need referrals down the line we're here to help........Pat

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9 years 8 months ago #24525 by deand
I have read through alot of the forum and I keep seeing the Cleveland Clinic mentioned over and over again. Is there something special about the Cleveland Clinic concerning Bladder Cancer? I did see on their website that they are one of the first to have the robotic arm that can remove bladders and do the neobladder surgery through lapscoptic. Havent done that much research on that procedure to see if that is unique or not.

I am currently seeing a Harvard trained urologist in Seattle that I have alot of respect for (Swedish Hospital) and I am not fully diagnosed yet (TURB being done in a week) for a small surface tumor (what the urologist said after the scope test)....but this Cleveland Clinic thing is interesting an I am starting to wonder if I "missed something". If I do have cancer past the Stage Ta that my urologist believes I have, should the Cleveland Clinic be something I should consider for future treatment? My urologist hasnt given me any reason to consider a different course of treatment yet although he hasnt done a "FISH" test on me, discussed the possibility of BCG treatment aftercare or anything like that. I believe he is waiting until pathology is done determining what kind of tumor I have before he explains the next course of action so I want to give him time...but at the same time, this Cleveland Clinic thing is very interesting to me.

Have any of you actually traveled out of state to go to the Cleveland Clinic for treatment and if so, why? What am I missing?

Appreciate the feedback

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