Questions after my first year with bladder cancer

fraziek

Hello all, have some questions that hopefully people with similar experience can help out with, but any encouragement and advice is welcome.

 

I'll start with my general specs and then the story: age - 38 (37 when diagnosed on 1-14-2012), sex - male, cancer - superficial bladder cancer low grade (i dont think they ever told me specific info on it but plan on finding out more tomorrow.

 

Had bleeding in urine for over a year, with problems urinating for right at 9 months or so, basically a pain towards the end, and never feeling like i completely empty. Had a kidney stone about the same time so doc thought it was a combination of maybe a kidney abscess (and never sending me to a urologist) or possibly Rhabdomyolysis since the severe bleeding (looked like dr pepper) always seemed to coincide with an extremely difficult workout. Finally decided to check for additional kidney stones with a ct but none were found. What was found was a golfball-sized mass in my bladder. 1 week later it was removed, and i was admitted overnight with bladder flushing. Sent home with no real issues. 3 months later no signs of the cancer. about 2 months after that started feeling a little less energetic, with some blood in urine and sure enough, i had 3-4 tumors at my 6 month checkup. The urologist was concerned that it returned but said the theory was sometimes the tumor removal could leave cancer cells that plant back into the bladder lining. A second opinion from an oncologist (from the same association, different location) agreed with him and said basically would have to do this every 3-6 months for a cpl of years but would eventually go away, and i think he said they might try BCG down the road. The tumors were removed and they gave me mytomicin. Discharged same day this time. 3 months later, i had 9 tumors. Set up an appt a week and a half later to remove, but i had started a new job and my old insurance became secondary to my new insurance. my doctor didnt take my new insurance, and even though my secondary would pay as long as they at least filed the claim with the primary and sent the denial with the claim to the secondary, they refused to do that asking instead that i pay for the $15000 procedure and get re-imbursed...it took 2.5 weeks to get in to see a new urologist, a week later to get another cytoscopy or w/e, and basically found 11 new tumors, for a total of 20. the procedure was done a little over a week after that.

The urologist said originally that the number of tumors to resect might lead to severe bleeding and maybe should do the procedure in a hospital, but decided to do it in an out-patient clinic he is partial owner of. after the procedure he said i would need to keep the catheter for 10 days "or so" because "the lining is so paper thin up there". odd since i never had to keep one before but oh well. that night i had severe breathing problems and had to go to the er...turns out they used a different anesthetic and i was the "3rd or 4th person to have those issues". went in for a follow up one week after the procedure, pushing him to remove the catheter so i could return to work, only to have him finally tell me that he cut a hole in my bladder and it takes 10-14 days to heal. Of course, everything i read says he should have had me admitted for surgery to repair, but maybe i'm missing something. Anyway, appt tomorrow to see if hole is healed by cystogram and if so remove the catheter (cant freaking wait).

So, my questions are:

has anyone had their bladder perforated in this procedure? If so, what did they do? are there long-term problems associated with that?

does that mean the cancer progressed into the wall? or did he just screw up?

he says he will do bcg treatments. how are these done exactly? do you have to get a catheter inserted everytime?

 

thanks for your help

Maverick1@

fraziek - bladder cancer

Sorry to hear about your nightmare. I am very new at this having been diagnosed with stage 3 bladder cancer a week ago. I can tell you my urologist told me that when he did a biopsy he would leave the catheter in until the next day and if he accidentally made a hole in the bladder wall it would be in for 5 days. I was treated for uti's for almost a year before my doctor insisted I go to am Urologist so I kind of have myself to blame. They both have the same symptoms. I am now starting my journey to decide which will come first, chemo or surgery. I wish you the best of luck!