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Looking for some help!

11 years 2 months ago #28185 by GKLINE
You are ME! only a few years older! I wish I had found this site BEFORE I had my Neo bladder surgery. My surgeon did a great job, but, I had ALL the same questions that you have!
I found a Surgeon in Albany NY that had served at MD Anderson in Houston and knew his stuff. My search for a surgeon was amusing to him. I asked him everything I was afraid of. Even told him that I was NOT a number. I had a lot of things to do with my life and if he was not up to the task, then I would look elsewhere. He was a little taken aback for a second. Then he opened up and we had a conversation. I think the medical community has a way of distancing themselves from the cancer patient. It may help them to cope.

But, after my "I have a Dream" speech, he really opened up and became a name.

I have entertained my friends with my description of my surgeon. I did NOT want an artist... I wanted an ASSEMBLY LINE WORKER. I wanted a guy (or woman) that has done so many of these that he can do them in his sleep. I kind of like the 1,000 count of successful surgeries as a guide.

As for the "getting back in life" part. I had my surgery on 08/08/08 and I was able to golf on Oct 15th, Ski on January 17th, and go auto racing on May 22nd. You will too. Reading your posts..... Maybe sooner!

The surgery is hard to recover from, but you will do it. Stay in good shape. This will speed your recovery. You will learn how to push yourself. Just knwo the difference between bad pain, and recovery pain or healing pain.

One thing you need to think about is The Ansthesiologist.... Very important! They are instrumental in your recovery. These people can really make or break recovery time. You should have a consult before surgery. They ask a LOT of questions.... answer truthfully. I think my "gas man" made a big difference in my mental clarity after surgery.

Keep up that positive attitude and you will be fine. The other people on this site KNOW their stuff and are more than willing to share.

Good luck

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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11 years 3 months ago #28166 by bcfighter
I tell anyone when they are first dx to always get a second opinion. but reading your post and you been fighting this cancer for 5 yrs now and went from a T1 to a T3 I assume you have been seeing the same Oncologist maybe it is time to get the surgery. Maybe it was just a misunderstanding on the part about a second opinion. What I was thinking say it were me and I was seeing the same Oncologist for 5 yrs and he told me my stage changed from a T1 to a T3 after this length of time I would trust his judgement. I didn't mean to start anything by saying don't get a second opinion, I hope you can see where I was coming from. Best of Luck, BCfighter

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11 years 3 months ago #28162 by rudyskier
I would not consider any ops unless I had at least 2 opinions. No doctor would say not to get a second or even 3rd opinion. I am currently working on my 4th. I am interviewing 2 of the best surgeons I could find with respect to doing all 3 Bladder replacement alternatives. Thats the way to go.


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11 years 3 months ago - 11 years 3 months ago #28156 by Humpy
If I didn't get a second opinion, I would be dead by now.

Age 54
T1NOMX,Grade 3 Urothelial CIS (Carcinoma in Situ)
Neobladder 5/19/2009
Prostate Capsule Sparing
U of M Hospital, Ann Arbor, Michigan

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11 years 3 months ago #28149 by Patricia
I respectfully disagree with you about no need for a second opinion. When any cancer is involved it is always prudent for a second opinion and always important to find a surgeon who performs cystectomy on a regular basis.

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11 years 3 months ago #28144 by bcfighter
These is no opting about having you bladder out it needs to come out asap and you need to find a good cancer hospital and most of these are in the larger cities depending on where you live. Sometimes the surgeon can't guarantee you a neobladder until he opens you up, this is when he has a good look at your ureters and makes his decision if it will work, I wanted one but my ureters were bad so I got the IP and I am quite happy with it.
At this point there is no need for a second opinion and you can't worry what you will be capable of doing. you have to think about now and your life and after your surgery and recovery all in time you will know what you can do physical wise. Too many people try to look to far ahead and this is wrong, you have to take it a day at a time and the waiting is the hardest part but you can do it. I wish you the best of luck with your surgery and make sure your surgeon knows the other 2 diversions you want and also make sure if you can't get the neobladder does he do the Indiana Pouche as not all surgeons do these. Some do just the neobladder and the outside bag. BCFighter.

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