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Working neobladders in women

12 years 4 months ago #5217 by Melodie
Hi!    First off I would like to say that finding this website has been the most positive thing that has happened to me since being diagnosed with BC.  In the beginning I kept saying, "how could this happen to me?"......I've always been so healthy, never even smoked my first cigarette; I'm not a male and not over 60....so how can I be diagnosed with BC?  I felt so terribly alone and went through a myrid of emotions until I felt like I was losing my mind.  I just wanted to crawl into some cozy hiding place and sleep the next six months away and wake to find a happy new world.  But no, I would instead need to put on a brave face and go on a journey that I felt I had neither the strength nor desire to make.  How would I manage it.  I knew my faith would guide me, I felt my family and friends would support me, but  I needed something more....a connection....and this I think I have found in this website.  I am so very thankful to any and all who have worked to make it such an awesome resource for people like me.  I feel it will be a real blessing to me and aid me in my decision making.  These are tough decisions and I wish to make the best one I can.

I was diagnosed in early March and just began chemo two weeks ago.  Because I didn't like what the first two doctors told me, I had to go out and talk to three others.
And we all know what time it takes to get appointmnets scheduled, even consults.  Anyway, I ended up a major medical university, and all five doctors have the same opinion....four months chemo followed by surgery to remove the bladder.  I am not a brave soul by any stretch of the imagaination and I also happen to be very fond of my ole bladder, even if it isn't functioning at it's best....so I have seriously considered not doing the surgery.  The doctors, however, think that is very unwise of me.  But who's life is it, anyway.

The doctor who initally removed the tumor likes to specialize in the "Indiana Pouch".  Also the doctor at the university seems to do much of the same....least ways for women.  He indicated to me that neobladders work better for men because "men have a better spikot" than women and there is alot of incontinence.  Now, I firmly believe that I cannot go into surgery unless I can make peace with the idea of surgery and the neobladder is the only surgery option I think I am willing to accept.

So, what I would like to do is to hear from some women out there who have had this surgery and hear what life is now like for them in regard to performance of their new bladders.  I don't think either of the urologists that  I have seen  will buy into this idea for me, and honestly, if they aren't enthusiastic, than I need to find a surgeon who is and who can help me achieve what I want.   Even now,  none of the doctors have given me a stage and grade, although I had asked the first two.  The last doctor who examined me (at the universitiy) said the cancer was on the muscle but was "marginal"....also that he thought he could save my vagina....I had a hysto. in 89 so the uterus is already gone.  Just had a PETscan done and that too looks good.  So with all that going for me, I think I should be a canddate for a neobladder.  

Below I have more detail about what led me to the diagnosis, in the event that sharing might help someone else out.....as I learn more, I recognize that my story isn't that unusual....sounds like we woman just are not diagnosed early enough simply because we are women.  One of my doctors said I likely have had this cancer for 18 months to two years.

 In early Nov. I knew something wasn't quite right and went to my GYN clinic complaining about a very minor discomfort in the lower left side of my pelvic area.  I thought it was perhaps an ovarian cyst.  After a pelvic exam and an ultra sound, the doctor could see nothing except a fallopian tube that held some fluid, which I hear sometimes results from a tubal ligation.
I went back in Dec. for my yearly check up and still nothing could be determined wrong.

In Jan. I returned again, this time complaining about a mild pressure in the pelvic area, an increased frequency to urinate,  aside from the discomfort that was initally there....but I had no burning sensation or difficulty urinating.  They gave me a prescription for antibiotics.  That did not resolve the issue so they gave me a second dose.  I called them back to say I wasn't really any better and was told they couldn't give m any more antibiotics.

In Feb. I went back to the clinic, examined by a third doctor in the clnic, who did a pelvic exam and who was able to finally feel something....he suggested another ultrasound.  Interestingly enough, when I went for the ultrasound, I learned the doctor had ordered a "pelvic", but when the technician asked me why I was there, I explained to her that I had pressure in the bladder area and she replied, "well, that is not what the request is for but since you have those complaints I will also take photos of your bladder.  Thank goodness we had that conversation.  

In March I had a colonoscopy scheduled because I wanted to rule out the colon as thebasis of my problem.  It turned out that the colon was fine.  I had asked that the results of my ultrasound be sent to the colon doctor and what he saw disturbed him.  He ended up making an appointment for me with an urologist four days later...this is when I began to get a little nervous as doctors don't usually make the appoints for the patient and make them so quickly.  

The next Tuesday I saw the urologist and I saw what he saw on the monitor, a mass of angry red tissue that I knew must go by the name of "cancer".  Two days later he had me in the hospital for surgery....cysto, TURBT.  I had done some research on the internet and I wasn't too worried as I had read the procedure was for "superficial " bladder cancer and I thought, "well, that's not so bad." It wasn't until after the surgery and I was in recovery when the doctor came in and matter of factly blurted out, "you have an agressive cancer, its into the muscle tissue, you need four months of chemo an then have your bladder removed."  Of course, this had to be a bad dream....this must be the drugs....I can't be hearing this.  But this was more than a bad dream...this was a nightmare.  

Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright

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