while getting a second opinion from a Uro at Moffitt Cancer Center in Tampa, FL, a Uro told me he has had to remove bladders due to patients receiving so many rounds of BCG and the bladder shrinking so much, the bladder can only hold very small amounts of urine and life is miserable for the patient. So from what he said, the bladder was removed not from the bladder cancer but from the BCG! Every body responds differently to BCG that is why we have to keep such a close watch with a good Uro.
10 years 9 months ago - 10 years 9 months ago#21306by Rosemary
This particular subject could not be more confusing.... In my research, I have been noticing that the references now are Stage I, II, III and IV.
I am absolutely certain that my Doctor has told me TWICE that I have Stage II Bladder Cancer. My cancer is not muscle invasive....My Urologist, who was s Duke resident, has simply GOT to be more on top of it than to get this wrong TWICE....
I really must get to the bottom of this!
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006
It all depends on how you count CIS. Lots of places term it a 0, since it's non-invasive. You still get BCG treatment for that. I did, but I could only take 3 treatments and then had serious reaction and couldn't take it anymore.
I was all clear from Oct 2006 until last month. Now I'm wishing I had gotten it removed instead of hoping the BCG and then Mitomycin C would keep it away.
Not only do I have positive cytology in the bladder, but now both kidneys have postive cytologies as well.
From what I understand though, that is very very rare and it is statistically better to try to treat and keep close eye.
Even with the cysto last week, my bladder "looks" perfectly fine. We did catch it fast, but it seems to have hit the kidneys and bladder pretty much all at once within the last few months.
That is indeed wonderful news! If your Dad had such a strong reaction to the BCG, I can understand why his poor bladder must have looked very raw and inflamed, and why it lost capacity to hold urine. But, as I understand it, in a situation such as this the bladder lining heals, and apparently your Dad must be on the way to healing if the catheter was removed. On the bright side, think of all the potential cancer cells that must have sloughed off in the process!
I think some of us were also concerned about what happened with your Dad because we either have had BCG, or (in my case) are in the middle of treatment. The thought of someone losing his bladder due to BCG treatment rather than the cancer itself was pretty scary.
Best of luck to your Dad.
Small TA Grade 1, May-06; recur (2 tiny), same, June-08; TURBTs both times. BCG begun July-08, dosage to 1/3rd May-10, completed treatment December-11. All clear since 2008.