neobladder

1 year 2 months ago #59195 by tseward123
neobladder was created by tseward123
I have been recently diagnosed with T1 high grade bladder cancer. I am going in for the 2nd TURBT this week. Regardless, based on everything I read, it is highly likely that I will need to have the bladder removed at some point. Obviously I would want that to be before the disease spreads to outside the bladder. I am male 66 years old in excellent health. I have carefully reviewed the 3 options for urinary diversion surgery. If I am deeded a suitable candidate, I will choose the neo-bladder option. I would very much like to hear comments from people, preferably men who have T1 high grade bladder cancer, who have had the surgery. I would appreciate any and all comments about the success or failure of this surgery and also how the recovery has gone. Thanks. Tom

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1 year 2 months ago #59196 by Alan
Replied by Alan on topic neobladder
Welcome Tom,

While I have not had to have a cystectomy, I was at your junction almost 12 years ago. You are smart being mentally prepared. My post is to say I am 12 years out and still doing well with a similar diagnosis as high grade back in 2008. If the TURB says no muscle invasion BCG has worked well for many on this board. I have always been taught to take all as one day at a time and do the least invasive path until you have to. Keep us posted and ask away as you go.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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1 year 1 month ago #59216 by Orillia
Replied by Orillia on topic neobladder
Sorry for the delay in my reply, and sorry to hear that you’re in the position to need this site. By now you will have had your 2nd turp and will have a much better understanding of your situation. Hopefully you have not been upstaged to T2 as a result. If your result is still T1 you will have that uncomfortable decision of RC or No RC. I was in that position 28 months ago, T1 high grade with Sarcomatoid features at turp# 1. Turp #2 revealed no malignancies. My Urol gave me the choice of BCG but due to the Sarcomatoid features, which is hyper aggressive , strongly recommended RC. I got a 2nd and 3rd opinion from top Uro-oncologists and they concurred.so , I had the RC 3 weeks after turp #2 and 9 weeks after turp #1. The op went very well ,got a neobladder, and I could not be more satisfied. I’m 100% continent both day and night, have recently had my 2 year exam,... bloods, histology , cystoscopy and CT scan and all is well. At six weeks all the appliances were removed and I was right back to doing physical work as a building contractor. I know that you are very concerned, but at T1 you are very fortunate, and there is a very high likelihood that you can completely rid yourself of this pest. Hope this helps. Orillia.

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1 year 1 month ago #59217 by Orillia
Replied by Orillia on topic neobladder
123.... I neglected to add that I was exactly your age (66) when this all happened. Being in good shape is both a huge bonus for your recovery and has a say in whether you are suitable for a neobladder assuming all margins are negative during the op. Orillia.

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1 year 1 month ago #59222 by tseward123
Replied by tseward123 on topic neobladder
Hi Orillia,
I thank you very kindly for your responses. It gives me hope in this dark time. Thanks. Tom

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1 year 1 month ago #59223 by tseward123
Replied by tseward123 on topic neobladder
Hi Alan,

Thank you for your response. A response from someone who has faced this situation is helpful beyond measure. Hopefully I can do the same for others. Thanks. Tom

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