Stage 3 T4a No

Posted by: Dixie in T4 - Tumor invades other organs on Print PDF

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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Wendy
February 26, 2007

Hi Dixie,

I haven't run into many women who've had vaginal fistulas post neo-bladder. There may be a special group somewhere for this problem, I'd check Yahoo.

As for neobladders, you'll find many women here who've got them. Like you experienced, very often doctors will say it's not possible to do, when the truth is they aren't qualified enough to perform them on women, it's a relatively new procedure. But the evidence coming in supports this approach in selected women, and the complication rate is getting less and less with experience.

You were wise to take your search to Johns Hopkins. It's a rare complication, but the surgeons there will know how to fix it. I wish I could give you info about the recovery for this surgery, but have nothing to offer.

Just want to say that your story of being mis-diagnosed despite long term complaints and symptoms is unfortunately all too common with women and bladder cancer. There is an awareness campaign underway, we have got to educate the public about the risks and symptoms, too many women experience significant delays before diagnosis and this isn't good.

It's good you're cancer free. I hope your healing goes quickly and this problem is now solved. Please keep us posted on your progress.
Wendy


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