Neobladder and new to this forum

I was reading from 'preanesthetic evaluation' and that was listed as the proposed procedure. I just went a little further (lots of paper here) and found the surgeons post op report. That lists the procedure as radical cystoprostatectomy with ileal neobladder.

It is inside.

If it sounds like I haven't read this stuff before, that is correct. This is the first time I have opened these records.

Well there's a first for me..i've never heard the term Pagetoid spread in relation to CIS......not that its not possible..i've just never read it before in a path report re bladder cancer. I've read about it with melanomas ...oh well...another first.
And it looks like you did have a TURB...which is a transurethral resection of the bladder.....the cystectomy you had i would gather was done under general anesthesia. This would have determined the stage and grade of your tumor/tumors.
And the pathology report says you have an ileal conduit? You're saying a neobladder......which is it.....inside or outside ?
Pat

Aha, found the records. I had the CT scan first and that noted it was consistent with cancer. The cystescope was next and biopsies were done which confirmed the cancer.

The biposies from the surgery showed left and right ureter negative; total of 10 lymph nodes from left and right pelvic resection were negative. Prostate was negative but bladder showed Invasive papillary urothelial carcinoma, high grade, forming an exphytic polypoid tumor on the superior posterior wall, invasive into the submucosa without involvement of the muscularis propria and located greater than 1 cm from the closest margin. Focal uyrothelial carcinoma in situ, Pagetoid spread, located in the right lateral bladder wall.

Also according the records, I was in for two weeks. Funny, sure seemed longer.

The procedure was listed as Cystectomy, ileal conduit,urinary diversion. I think that covers it.

I've seen the reference to a TURB in here but don't know what it is. Would appreciate a translation. Things did move pretty fast but for all I know he could have done that too. Oh, if I remember correctly, I had a CT scan too that evening.

By the way after I was released and went to 3 oncologists for further review (from different hospitals and oncology centers) all concured with the treatment.

I will reread those records when I can find them

I'm kind of dumbfounded at the speed of lightening that you went from the ER to a cystectomy and neobladder. Your doctor made a diagnosis without doing a preliminary TURB..just said the tumor was too large to save the bladder? Am i correct? Wow i need to know the name of this seer!
Take a good look at that path report ...how many nodes were taken and yeah what part and how much of the intestine he took to make the neo.
I wish you great luck and success with your new bladder and i'm sure the guys will give you all kinds of tips on dealing with it.
Pat

I'm a 64 yr old male and in March 2008, I went to the emergency room with blood in my urine and unable to pass much urine. Things really went pretty fast. There was more blood when they inserted a catheter and a cystoscopy was immediately scheduled and I was admitted.

The cystoscopy showed a mass in my bladder which they believed was cancer but would wait for the biopsy results to confirm. Dr. said that if it was cancer they would do an RC (as I believe you refer to them here) and described the procedure with the neobladder. He said the mass was too large to save the bladder. They would also take the prostate and when I asked if that was also involved he said it was a 'package deal'. Well, who can refuse a good bargain! He told me I should be able to urinate fairly normally and that turned out to be true.

Several days later the cancer was confirmed and a bone scan was also run. That was clear so I at least had some good news, under the circumstances. I tolerated the surgery very well they said with vitals rock solid. For pain, they had a needle in my spine and a pump. The name escapes me but it is basically the procedure they use for women in labor. this was kept in for abt 2 weeks so I really had no pain at all from the surgery. By the time they removed it I only needed some minor relief for a couple of days.

Several days after the surgery the doctor advised me to start buying lottery tickets. The cancer had not penetrated the bladder wall and the sample nodes they took were all free. As far as they could tell there was no evidence of cancer spread beyond the initial in the bladder.

Now, I was faced with the trials and tribulations of recovering from the surgery and getting the neobladder to work. Total time in hospital was about three weeks. This all took place in Highland Park Hospital which was part of the Evanston/Northwestern group in north suburban Chicago.

Having been lurking around on the site I am staggered by the amount of knowledge everyone seems to have. I didn't know there was more than one kind of Neobladder procedure and can't tell you which I have (I'll know when I find the extra copy of my medical records we had made and read those).

I did want to introduce myself first and hopefully, my recovery experiences can contribute to the group.