Life w/ a Neo-Bladder

I can only say that I wish I had found this site around 6/22/06.  It’s wonderful to hear the stories of others and read through the forum links.  BC is not well known so when I found out, I truly felt alone.  Since everyone has their own tale and no two are alike, I thought I’d share mine with you.  If it deems posting, I’d be happy to hear from anyone with any question.

I’m 45 yrs old and pretty active though smoking has always been a tough nut for me to crack.  I did quit for 2 years at one point but since I had been on and off using nicotine lozenges to help out.  Any way, June of ’06 I started to notice my urine was darker.  Having had a Kidney Stone some 3 yrs ago, I learned, dark pee means DRINK more water.  Regardless of how much I drank, the urine was darker than normal.  I finally set an appt. with my primary Dr., his diagnosis… once a “Stoner” (Kidney Stones), always one.  Since it had been a couple of weeks and the pain was minimal, he was a bit concerned so set me up for a scan.  That came back inconclusive so he decided to send me to a Uro.

At this particular Uro office, you don’t see a Dr. for stones rather a well qualified RN who after reviewing the scans and symptoms recommended a scope to look around.  She took a urine sample and sent me home feeling very comfortable that they would go in, find a stone and tell me how we might pass or bust it up.  When she called back later in the day to tell me that my urine showed positive for cancer, I was floored!  She quickly added that these tests can easily present false positive and do not panic.  She was very confident that due to my age and symptoms, cancer was not the issue.  I quickly forgot about that conversation and moved on.

My Uro does many scopes in the hospital under anesthesia so when I woke up and had this cath-thingie in my penis; I was a little taken back.  The Dr. came in telling me that he found and removed 5 cancer tumors.  OK… now I was really floored!  I had no idea what he was talking about, never heard of BC and my wife was 600 miles away.  The ride home with my friend was pretty quiet.  At home, I slept for a couple hours then called my wife asking her to come home immediately.  Of course she wanted to know why and when I sprung the news, she was taken back.  I had not said anything to her on this subject as all along, I was told so little myself and anything that was said of BC was in passing.

2 days after TURBT, Dr. called with news on staging.  T-1, G-3 with CIS.  He tried very hard to explain in plain English but still I was a bit lost.  I turned to the internet and started reading all I could find.  Set an appt. at John Hopkins in Baltimore, got a raving recommendation from CA based group about the folks at JH so left it at that.  I’ll see my local Uro and JH.  I then discovered my local Uro had completed fellowship at Mayo specializing in BC… was this luck or fate?  Any way, I was set to see both in one day.

My local Uro explained BCG, RC and Re-Staging.  He recommended Re-Staging for ANYONE after initial TURBT saying that 50% of the time, initial staging is low.  He seemed to lean hard to eventual RC due to young age, # of tumors and CIS.  He answered all questions I could muster and made me feel very confident that he could help me through this but of course; I had to make the decisions.  He applauded getting other opinions but also pushed me to make a decision quickly.

At JH that afternoon I felt like a number.  I had pictures of the tumors, path reports, surgery notes, etc.  The doctor barley looked at the Path report and never asked a question.  He just said “OK, BC T-1 we set you up for 6 weeks of BCG blah, blah, blah”.  When he was finished, I asked about other treatments and he continued with “If BCG does not work, we add Interferon, blah, blah, blah”.  I’m not sure of everything he said because I felt like he was talking to a file, not a person.  When I told him that my local Uro was leaning to RC w/ Neobladder he was astounded!  He went on about how that was NOT the right way since it was such a radical approach and that I did not want to get sent home “With a bag”.  He made RC sound horrifying!  While I did not like his bedside manner, it did make me think perhaps my local Uro was a bit too aggressive.  The only thing he did agree with was the Re-Staging TURBT since if things came back a T-2, RC was the answer.  Great to hear that after he made it sound like the end of a normal life!  Funny thing was, he gave me several articles to read and many of them actually helped my in my final decision.

I called my local Uro to schedule the Re-Staging TURBT which came back with some remaining T-1, G-3 CIS in one of the areas previously resected but nothing new or worse than before.  When I met back with my Uro, he explained that BCG was certainly an option but he still seemed to lean to RC.  He would not come out and say it but because of age, # and CIS, he and associates he consulted felt sometimes you get one chance and at 45 you don’t want to look at 5 yr survival numbers, we’re looking for 25 years.  He just made me feel good that if I chose RC w/ Neobladder, I would be OK.  He explained many things about the process and after care.  He went so far as passing my number on to a patient that was 6 mos post-surgery and asked him to call me.  Hearing from him was great.  He was able to talk to me in my language without all the Dr. talk.  My wife and I had a long discussion and we both agreed.  I’d rather get a few more points on the long term survival side and live with some changes than chance things.  I am a gambler at heart but when I was looking at the long term, even the JH reports that showed 1-2% better results from early RC made a difference.  BTW, reports can be confusing since I found some that showed little or no difference in early RC but I did find some that went as high as 7% better results.  Every report has it’s source and subjects.  Hard to read between the lines but I felt even at 1%, it was my life.

I am currently 4 weeks post-op and happy to report all is well.  Surgery was a long 10 hours with in hospital recovery of 10 days.  Would have been 8 but I had a problem with solid food so we started over going back to liquids.  Walking every day is a must soon after surgery to “wake your bowels”.  I must say it’s not pleasant when they do wake up though.  Several days of very liquid movements made me want to go back a few days but move on you must.  My wife found some medicated wipes, that helped since I was feeling pretty raw after a couple of days.  Your first walk seems like you’ll never make it out your door but within a couple of days you’re ready to sit in the sun and soak up a couple of rays.  I can still remember my first shower after surgery.  I’m not sure if it was 3 days post-op or 4 but it was glorious!  One item I had not seen in other stories has to do with swelling.  Not sure if it’s normal but my Uro made it seem so.  With RC, removal of Prostate and surrounding LN’s is done.  Post-op, my scrotum swelled a lot!  My wife now tells me she was actually scared it would be that way forever but Dr assured me it was expected and would go down soon.  I did develop a pretty bad rash around the inner thighs.  This was apparently helped because of the antibiotics but cream and kept dry, it passed.

My post surgery path report came back showing still some more CIS in the bladder nothing beyond a T-1 and the nodes were clear but the big surprise… prostate was positive for cancer!  T2c, N0 with Gleason’s score of 6.  I still need to look all that up but any way, suddenly felt wonderful about my decision.

mikmckna Author