Stage 3 T4a No

I was diagonosed with BC on Sept.23,2005 which made me a 47 year old female.  The Dr. that diagonosed me told me I was not a canidate for a neobladder.  He told me I would have to get a stoma or bag due to my situation.  I had around a 4cm sized tumor that was transitional cell which had gone through my bladder wall which made me a Stage 3 T4a No.  I had been c/o of frequent urination to my gyno and family Dr. for months.  I also had irregular periods and had developed high BP.  My Dr.’s nevered worked me up.  They all blamed it on menapause.  Unfortunately, I was the one that found myself urinating blood and told them to check me for a bladder tumor.  
My story is very long but, I will only try to just touch on the important parts.  I traveled to six different hospitals for the right surgeon and oncologist.  Trying to find out if I was a canidate for a neobladder.  This was a education in it’s self.  Out of the six hospitals I went to only two of the places performed neobladders, the other surgeons didn’t know how and just said I wasn’t a canidate.  It ended up I have my oncologist at Sloan Kettering and my surgeon at Johns Hopkins.  I was treated with chemo for three months (Cisplatin and Gemcitabin) before my surgery. I had my surgery on May 25, 2006.  A neobladder was created and a total hysterectomy with around 30 lymph nodes removed,which were clean(thank God).
I was in the hospital for six days.  I was sent home with a foley in for two weeks.  I had problems with my bowels and gas post-op which could be a story in it self.  I live about four hours from the hospital where I had my surgery so the ride home was a little scary.
But, I am skipping to my foley being removed and I leaked non-stop.  I started doing Kegel excerises like crazy and even went to a PT girl for incontence.  I kept getting bladder infections with the leaking.  Well, eight months later they thought I had a vaginal fistula.  I just had it repaired three days ago and now have a foley in again for two weeks.  Is there anyone out there that has experienced this?  And if so how are you since they took the foley out?

Up date(March 9):  I found out when I visited Dr. Wright post surgery that I didn’t have a fistula.  I had a leak where they connected the neobladder and the urethra so they just needed to restitch it.  The Dr. explained I should stop leaking totally in about three to six months. When he removed my Foley on March 5, I had good results.  I have very little leakage through out the day(only need to wear a panty liner) and I can hold my urine for about 1 1/2 to 2 hrs. without leaking unless I drink coffeee, then I have to go 1/2 to 1hr. and I started doing my Kegel exercises again.  I understand it is like starting all over again,and I will have to work on getting up to 4 hours.  I still have to wear protection at night, but not diapers.  I understand at night is the hardest time to be come contient, but I came this far so I guess I can be patient.  Things are so much better now, thank God.
Dixie B 🙂

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