Bladder cancer & kidney transplant

Posted by Bob Taub @tucsonguy, Aug 2, 2021

I recently found out about my bladder cancer condition three months after my kidney transplant. Because of the transplant I can’t have radiation because it would affect the kidney so I’m going through chemo starting today and after the chemo treatments they will remove my bladder.. Anyone else out there have the same condition and how did they handle the chemo. Appreciate any advice. Thanks.

Interested in more discussions like this? Go to the Bladder Cancer Support Group.

@colleenyoung

I'd like to bring other members who have experience with bladder cancer and bladder removal (cystectomy) into this discussion like @sue225 @jimmy2248 @texascitylady @jackc @parus @quark @judith4.

@tucsonguy, are you getting intravesical therapy like Bacillus Calmette-Guerin (BCG) or a different kind of chemotherapy? Do you have any questions about the bladder removal that you'd like to be prepared for?

Jump to this post

Yea! What is life like carrying a bag around for the rest of your life. I think I am ready for it but just want to hear it from someone going through it. That’s the only thing that scares me. Thanks
Bob

REPLY
@tucsonguy

Yea! What is life like carrying a bag around for the rest of your life. I think I am ready for it but just want to hear it from someone going through it. That’s the only thing that scares me. Thanks
Bob

Jump to this post

I had mvac chemo last fall ending 12/17/20 for t-2 invasive. I put off immediate radical cystectomy for months in search of any alternative. In April finally agreed to another turbt to prep for radiation and more chemo. The result showed no visible tumor remaining and so will pet scan again in January. Would like to pursue new ultrasound and cytology which is not available at the VA for additional diagnosis. My thought is something worked or just my dumb luck hunch for waiting. So far so good but my doctors remain skeptical regarding my prognosis. They all said there is a slight chance given time the chemo could be curative.

REPLY

Thanks for the info. I had my choice of going to the VA or civilian care and Joseph billion care because of the limited facilities at the VA.

REPLY
@repeterson137mayo

I had mvac chemo last fall ending 12/17/20 for t-2 invasive. I put off immediate radical cystectomy for months in search of any alternative. In April finally agreed to another turbt to prep for radiation and more chemo. The result showed no visible tumor remaining and so will pet scan again in January. Would like to pursue new ultrasound and cytology which is not available at the VA for additional diagnosis. My thought is something worked or just my dumb luck hunch for waiting. So far so good but my doctors remain skeptical regarding my prognosis. They all said there is a slight chance given time the chemo could be curative.

Jump to this post

Don’t know why the picture came out upside down.

REPLY
@tucsonguy

Don’t know why the picture came out upside down.

Jump to this post

Everyone at the VA has been doing the best they can within their protocols and limitations. Surgeons favor surgery, radiologists favor radiation...etc. There's so much new information you have to be doing your own research (BCAN newsletter etc) to keep current and aware. Cystectomy isn't always the 'gold standard' these days, but as the doctor's say decisions can be life threatening so be careful and get multiple opinions.

REPLY

Not similar. But had bladder remove 4 yrs ago.

REPLY
@tucsonguy

Yea! What is life like carrying a bag around for the rest of your life. I think I am ready for it but just want to hear it from someone going through it. That’s the only thing that scares me. Thanks
Bob

Jump to this post

My husband can relate.

REPLY

Has he had to overcome many. Opsticles? What was the toughest?
And anything else you conciider important.

REPLY
@jimmy2248

Not similar. But had bladder remove 4 yrs ago.

Jump to this post

Did you have a bag? WhAt was the most difficult change? Any information would be helpful.

REPLY
@tucsonguy

Did you have a bag? WhAt was the most difficult change? Any information would be helpful.

Jump to this post

Yes I have ostomy bag.
The hardest thing for me was accepting that i may shower. I think i was concerned about getting the ostomy wet. Now I swim without hesitation.

REPLY
Please sign in or register to post a reply.