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Looking for Dr in Minnesota and some advice

9 years 4 months ago #32819 by Gracie
Hello Rolin,

I have not had much opportunity to visit the forum lately. So glad I did - now here is something that I can contribute to.

Dr. Konety was my surgeon @ UCSF. I chose to have an Indiana Pouch. Dr. Konety is an amazing doctor. He was recruited to head the urology department in Minnesota. Pat is right - his wife is a doctor - I believe she is a cardiologist. His decision to leave UCSF was largely due to the opportunities also presented to his wife.

He is an amazing surgeon and an amazing man. He also practiced in Iowa with Dr. O'Donnell (very well known in the BC world). Dr. O'Donnell worked with Dr. Lamm (the BCG guru). They all know each other well.

When I was first diagnosed I also went the BCG route.
I ultimately had RC because of reoccurences. Dr. Konety is very experienced with all diversions. I know and have spoken to many of his patients that have had RC. Men and women. They all sing his praises.

You will find him intelligent,patient, easy to communicate with and someone who genuinely cares. I still keep in touch him.

Choosing the right doctor for your care will be the most important decision you will ever make. I know I picked the right doctor.

The best of luck to you. Please let me know if I can help in any way.

Gracie

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9 years 4 months ago - 9 years 4 months ago #32814 by Patricia
Rolin,
Well they like to tell you when they lose a dr. that they've retired but Dr. Blute is very much involved and now at Mass General head of a new surgical department badly needed there as their expertise has previously been on bladder preservation.
As for Konety ..another loss for UCSF as he's one of the few surgeons that can do all three diversions.
And how do i know these surgeons...8 yrs of research..talking to other uro's (they love to dish the dirt)...reading every paper out there and who wrote it. Its actually a very limited field..urology a big field..bladder cancer a small field. And some of the largest institutions may have a great ranking for urology but go through their list of urolgists and find their main interests...won't find much bladder cancer at some places. Other not as prominant centers such as U. of Iowa, U. of Pittsburgh, U. of Chicago, St. Louis have some of the top specialists in bladder cancer. Mayo right now has very few ..one maybe but i don't know much about him except he has training from Cleveland Clinic.. Dr. Igor Frank
http://www.mayoclinic.org/bio/12529231.html
If you go through their list of urologists you'll find prostate, testicular, female incontinence......not much bladder cancer specialty
http://www.mayoclinic.org/urology-rst/doctors.html
Cleveland Clinic having the same problem right now in that field...tops in urology..but main Dr. went to USC/Norris and took his team with him leaving them to scramble and bring in lots of new and very young uro/surgeons which is good but without much of a track record. They only have one of the old guard still there.
I'll try to track down some of the papers written by Konety. He's impressive.
http://www.auanet.org/content/about-us/scholarships-and-programs/leadership-program.cfm?sub=class2008
these guys are ALL impressive.....
pat
pat

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9 years 4 months ago #32812 by Andy
Hi Rolin -

Yup - I'm the same Andy that's on Inspire. My initial tumor was large enough and multi-focal so it took 2 TURBTs to remove it all. I believe 6 weeks before starting BCG is pretty common so the bladder can heal completely from the TURBTs. The more I learned about T1G3 the more I realized I had to go to a major cancer center and be restaged, our cancer is often understaged and therefore under treated. Thank God for this website and the Inspire site also - great folks and great advice. My restaging TURBT was 6 to 7 weeks after the initial surgeries and yes, I was full of cancer again with CIS also present. That's why I decided to forego the BCG and move right to the RC, better percentages plus my surgeon was fairly certain I'd end up with a RC eventually. I'm 52 - the surgeon said if I was 75 he'd try BCG but at my age an immediate RC was my best bet. I know not everyone agrees with not attempting BCG, but I'm very satified with my decision - I wanted my best shot at long term survival. Pathology after surgery confirmed T1G3 with CIS and it had just started to move to the prostate. All lymph nodes were clear and my margins were excellent.

Hope this helps - keep asking lots of questions - best of luck. If you want to talk let me know. Enjoy your beautiful state - we houseboat in Minnesota (Rainy Lake) quite often.

Andy

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9 years 4 months ago - 9 years 4 months ago #32810 by Rolin
Patricia, I've heard you have an enormous amount of information about Bladder Cancer and the best doctors who treat it! I've read many posts from you and know you've helped others in ways no one else could. Thank you for your reply!

Have you personally talked to Dr Konety, or are you basing it on what others have told you? Regardless, it sounds like you have heard good things about him too so I'll call his office and set up an appointment - hopefully he's had great success with BCG.

Anyone else in Minnesota? I've researched all the forums for hours and hours, but I'm not seeing very many people post from Minnesota, or mentioned a great doctor for BCG or Neobladders. We have 2 great Cancer Centers here - The U of M Masonic Cancer Center, and teh Mayo Clinic. You'd think there would be more people mentioning a Dr or two around here - nada. Well there was a Dr Blute at the Mayo, but he recently retired. Other than him, not many names mentioned in Minnesota.

Rolin

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9 years 4 months ago #32809 by Rolin
Hi Andy, I think you're the same Andy on the Inspire website, aren't you?? Thanks for the reply. The CIS scares me a little too. On one hand, CIS is superficial but on the other hand it's very aggressive and spreads quickly. I think I read that it can be a precurser to TCC (maybe someone can correct me on this).

Please clarify for me - did you say that after your first TURBT, you had another one 6 weeks later and they found it was full of cancer again including CIS? Does it grow that fast? I was worried I was getting a little long waiting almost 5 weeks for my second TURBT, but everyone assured me 4-6 weeks is OK.

Thanks again for taking the time to reply - you do sound like you're doing very well.

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9 years 4 months ago #32808 by Rolin
Mike, Good info. Too bad for me that Andy and Humpy went to the "other" U of M in Michigan not Minnesota! I know they got great care, I read Andy's story on another website and know he's doing very well.

You had to wait 6 hours to meet with a doctor you weren't impressed with? Wow! It's frustrating because it takes time to set up these appointments, you usually have to wait weeks to get in,sending records, slides, etc - and because of the time factors and risks everything has to be managed very quickly. Time is precious which makes it stressful.

Thanks for the link to Dr Lamm. I've read about him and know he is the BCG King! I sent an email tonight and asked him if he knows someone who has a lot of experience and success with BCG in Minnesota. Not sure how long it takes to get a response, but I need to find someone within a week or so - hopefully I can get this set up and get started with treatments.

Rolin

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