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confused, not knowing how to proceed

5 years 5 months ago - 5 years 5 months ago #45017 by CatherineH
Hello Mike... Congratulations on getting through a tough "kidney taker outer" surgery with very good reports. You have gone from "confused... not knowing how to proceed" to "been there, done that!"

I am so happy we were able to ease the waiting period a bit for you, but you did all the heavy lifting! You did your homework, got that second opinion, and did what you needed to do. Bravo to YOU!

Now you can enjoy the rest of your summer! B)

Best wishes... Catherine
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TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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5 years 5 months ago #45016 by MikeP
Hello and greetings from TampaBay Fl
I like to thank you for your posts, replies and most important your advise.
I did in fact go to H L Moffit ( a NCI rated hospital ) , armed with every report, cd of cat scans and results of fish tests
Waited till I was seen within the urology dept , the place was quite analyzing , my tests results were takin, digested and I met with a surgeon who had consulted with a oncologist
Bottom line was that they agreed with the plan my doc had mapped out. With the only suggestion being the resulting bone scans and cats if came up clean go ahead if not pursue chemo first
Well all scans showed up negative, nodes were the same sizes for three scans
So on 24th I had a radical ( kidney taker outer , tube and cuff of bladder) my words not theirs
Just getting back on my feet and all pathology is great as it was stage one , self contained and nothing in nodes

So thank you all who grounded me at a time when I needed it ,
Thank you

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5 years 5 months ago #44930 by Nix
Mike,
I also live in the Tampa area, and I go to Moffitt for my care with Bladder Cancer. My doctor is Dr Sexton, and being fives years out I am very pleased with him. I really don't know if he is also kidney.
There is also a MD Anderson in Orlando and I know they have uros there. It isn't real large but you could find info on Google.
Good luck,

Nancy

Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07

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5 years 5 months ago #44928 by MikeP
Thank you all for your suggestions ( pardon my spelling) .
I did seek out another opinion , I went to Moffitt Cancer center here , an NCI rated hospital. Spent the day collecting all my records and met with the head of their GU dept.
He agreed with the trac I am on.. there might be a benefit to do a Biopsy before surgery but only slight and because when it is located taking samples for pathology is probably not a good Idea
so the rest of this week is bone scans, lung ct for staging and op on Monday am
again thank you for your help

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5 years 5 months ago #44894 by sara.anne
Mike, I am not personally familiar with Moffit, but I did a thorough check of their web site. It appears that they have several urologists who specialize in kidney/bladder cancers. The one thing you want to be careful of in choosing a urologist is to get one who DOES specialize in this area. Many urologist see mostly prostate cancer patients and do not have the experience you might need.

When your current urologist said that he has done "hundreds of the same operation" is he talking about the combination of kidney and bladder? Does he always chose to do them laporascopically? (Sometimes this is a great idea and sometimes it isn't...depends on the situation...and a good urological surgeon knows the difference!)

It would certainly be worth a consultation there, particularly since it is in your back yard!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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5 years 5 months ago - 5 years 5 months ago #44892 by CatherineH
Good morning, Mike... I don't have any info on Moffit personally, but Sara Anne probably does. I'm not sure if you can travel a bit, but Mayo in Jacksonville might be an option to consider as well. I ended up having surgery 300 miles away to get to the best care available.

I'm sure your doctor is competent in what he does, however, renal/bladder cancers are very specialized fields and seeing a urologist/oncologist is what I would highly recommend. Another thing I would want a second opinion on is whether laparoscopically is the best way to go for you. Everyone's case is unique and you want what will give you the best possible outcome. Also, confirm that some lymph nodes will be removed to get a more complete pathology.

The larger hospitals also have online information about their urology staff and sometimes you can request an appointment that way. Your plan to just go there to talk to the appointment people can't hurt either.

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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