Gathering info for the decision time

12 years 7 months ago #38746 by GKLINE
Replied by GKLINE on topic Gathering info for the decision time
Even though I did not go to MD Anderson.... My surgeon did.
I was ready to get on a plane and go. He even encouraged it!
My surgeon said MD Anderson had the "Team" as Mike said.

If I was only 4 hours away......... I'd GO!


My surgeon did more than 600 neo's and he spent 3 years at MD Anderson to learn his craft. I felt I had the MD Anderson experience in Albany, N.Y.

If I had found this site before surgery...... I would have gone to Houston. I happen to have been exremely lucky here. LUCK being the word.

George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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12 years 7 months ago - 12 years 7 months ago #38705 by Patricia
Replied by Patricia on topic Gathering info for the decision time
Firstly all neobladders are not created equal...there are several types and you want to know which type the surgeon is doing and what parts he is using. Here is a great article that will probably freak you out but its got everything there you need to know.
tinyurl.com/3zpfpzt

You want to know how many lymph nodes will be removed.
I traveled 4 l/2 hrs away for my surgery and i did follow up here in my home town by a uro recommended by my surgeon and he was quite happy to do it. All follow up CT scans and blood work done here and a copy always sent to the original surgeon for confirmation. It worked out great. My local uro did a great follow up on me in regards to my B12 also. So i was a happy camper.
pat

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12 years 7 months ago #38702 by motomike
Replied by motomike on topic Gathering info for the decision time
We will be watching your progress and supporting you as best we can. Please keep us informed. Wishing you the best.

I'm 70, retired heat/air contractor. After 4 months of keymo ileal conduit (IC) surgery removed bladder & prostate May 2010

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12 years 7 months ago #38685 by mmc
Replied by mmc on topic Gathering info for the decision time
I don't think you will have a problem with a local uro doing some of the follow up. They may even be able to recommend someone local to you when you are at MD Anderson. MD Anderson is one of the top places so, if it were me....

Twelve a year is not enough in my humble opinion. Fifty a year or more is where you want to. A hundred a year is even better.

The answer to number three is that the urethra is sewn to the neobladder. Similar to the way the ureters are sewn to the neobladder at the top, the urethra is sewn at the bottom.

On the how many neobladder questions, I would suggest following that up with "and what percentage had complications, what kind of complications?"

Another thing about MD Anderson is your getting a team, not just the surgeon. You want the best surgeon you can get but the team is important as well. While your surgeon will likely see you every day while you are recovering in the hospital, there will be other doctors seeing you as well.

Also, nurses are EXTREMELY IMPORTANT! They are doing the day to day, hour to hour care. They need to be very well versed in neobladder recovery, complications, etc. It's not just general surgical recovery--it is specialized. So again, my bet is that MD Anderson has much better nurses with the kind of experience that would most benefit your recovery. Again, just my opinion.

Let us know how the interviews go. Best of luck with everything. The choice of surgeon is pretty much THE critical decision now.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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12 years 7 months ago #38684 by efoster4242
Gathering info for the decision time was created by efoster4242
I was diagnosed with the tumor about 14 weeks ago. I went throught the BCG and was re-scoped about 4 weeks ago. The tumor had grown back and was just starting into the muscle. So I am at the point of deciding which doctor to do my surgery.
I am in the process of gathering info on the RC surgery. I have pretty much decided on the Neo connected to the regular plumbing. I am 61 and it seems to be the most sense for me. I am fairly active and want to stay that way after. Thanks Mike for all of your time and info, your input is helping me a lot. I talked with a surgeon urologist here in town and he said he does the removal and has done 12 in a year or about 1 a month. Another female doctor does the reconstruction and i haven't interviewed her yet. If she does the reconstruction maybe I'll be more connected with my feminine side. :laugh: My wife would like that.
I have an appointment with MD Anderson on Tuesday Aug 2. I have the names of the 3 doctors that were recommended on this site and will be interviewing them when I go. I would like to have it done closer to my home, MD is 4 hours away, but will do it where I have the best chance at a good outcome. One thing my general practitioner told me was if I did the surgery at MD make sure one of my urologists here would help with the follow up. It would be a pain to have to go back and forth to MD for routine appts.
I am making a list of questions for them as I think of them.
1. How many neo's have they done ?
2. Can they do an epidural and will it help?
3. How does the connection from the neo-bladder come out to connect to the uretha?
Any other questions that I should think about asking ?
I will get back here with the answers I got and share them for others. Thank you all for your time and help. Having a site like this makes all the difference in the world as to how a person goes about taking all of this in and remains sane.

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