Hi everybody who replied to my note so far,
Warm wishes to everybody...I'll be back on soon,
I had multiple Ta G1 - 3 tumour with CIS and went with the neo. In your situation, looking back, I probably would. For me personally, the op has been a lot better than I thought it would be. My lifestyle is very much as it was before.
Its an extremely difficult decision. I am 36, was 35 at time of diagnosis with T1G3, but with angiolymphatic invasion and multiple sites, with CIS. The evidence for this particular type of disease is unclear, and I took the pragmatic view that this was likely to behave more like a T2 tumor. I had a cystectomy and neobladder, and also underwent 3 months adjuvent chemo (MVAC).
It has been a difficult year, but worth it for us as a family. We decided that despite the risks of the surgery and chemotherapy, we were not prepared to discover tumor at a more advanced stage after TURBT and bladder/local chemo.
As I said at the beginning, it was a difficult decision. We will never know whether I could have 'got away' with bladder sparing treatment, and luckily I managed to survive the chemo without too much trauma. I am still getting to know my bladder, but am fit and well, and able to mountain bike better than I have for years.
Good luck with your decison, and best wishes. Andy.
Thanks for this note and the one sent to me personally (hope you received my other reply too). Your comments here back up everything else I'm finding out, and as I said in my personal note to you, I have made my decision and the RC will be Jan. 18. I will certainly continue to come to this forum...it's a great source of info and support.
Very best regards and good fortune to you,
When I was first diagnosed at the age of 54, my Urologist sent me pronto to the Urological Surgeon in Chapel Hill, NC. I had been diagnosed in January with T1 G3 disease and undergone two TURB's (the second one being for "residual tumor"). So, in May, I went to the nice Dr. in Chapel Hill. At this point, I had not had any treatment. The two Dr.s were both concerned for me because of my AGE and because of the fact that I might have to be looking at an RC sometime down the road anyway and so they wanted to be cautious and evaluate me for RC.
THE ONLY REASON THAT I HAVE MY BLADDER TODAY, IS BECAUSE I DID NOT HAVE RECURRANCE
BY THE TIME OF APPOINTMENT WITH THE SURGEON IN MAY. THIS WOULD HAVE BEEN THE DECIDING FACTOR.
There was another fella at Chapel Hill at the same time as me being biopsied for the same reason. Because he had recurrance, he was not given the choice of keeping his bladder.
I hope this helps you somewhat in making your decision.
Please take care and keep talking to us.
Very best regards,
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006