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12 years 4 months ago #6212 by Alice L.
TIM, I just read this!

Cystectomy is a major surgical operation. The patient is placed under general anesthesia. An incision is made across the lower abdomen. The ureters are located, tied and cut. The ureters connect the kidneys to the bladder. Cutting them frees the bladder for removal. The bladder and associated organs are removed. In men the prostate is removed with the bladder. In women, the uterus, fallopian tubes, ovaries, AND PART OF THE VAGINA are removed with the bladder. The bladder collects urine from the kidneys for excretion at a later time. Since the bladder is removed, a new method must be created to remove the urine. A small piece of the small intestine is removed, cleaned, and tied at one end to form a tube. The other end is used to form a stoma, an opening through the abdominal wall to the outside. The ureters are then connected to the tube. Urine produced by the kidneys now flows down the ureters, into the tube, and through the stoma. The patient wears a bag to collect the urine.

Part of the Vagina???? Now what would happen to me after that? I am still single, but plan to eventually, hopefully, find someone that would put up with me, lol.

Tim, this really frightens me. Did it make a difference in your life? I am sorry. I don't mean to get personal, but it really does concern me.

Alice

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12 years 4 months ago #6211 by Alice L.
Hello Tim,

Thank you so kindly for your time and for sharing your experience with me. I really am so sorry to hear about your father and your sister. I too lost my sister when she was only 31 of Inflammatory Cancer.

Tim, you said you are a year younger than me, it might be two years younger. I turn 34 on June 28th. Oops, did I say 34? I really meant 46, lol.

I really don't know if I am ready to lose the bladder or not. It really is so scary, but I do know I will be asking this next URO alot of questions. Following Zach's advice, I have already started writing down questions. If you or anyone else can advice of question I need to ask, please feel free to let me know.

So Tim, how long have you had the new bladder? Have you had any complications with it since? Please let me know all, for I am so very interested.

Do hope you have a great day at work.

Alice

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12 years 4 months ago #6195 by timb
Alice I just read your original question and, for the record, I was 14 years between initial diagnosis of G1 bladder cancer and my final siagnosis of G3 with CIS that led to my cystectomy. I've had a huge number of cystoscopies in that time, mitomycin, BCG etc and, for me, the cystectomy route has felt really right. Scary at the beginning, as for everyone, but right. I'm a year younger than you. I've adjusted well and, except for a few nighttime continence issues my life is pretty indistinguishable from what it was before the op 7 or 8 months ago. In fact its better because the frequency of "treatments" and the invasiveness of them is now much lower and I finally feel I can plan a future. I could never really look beyond 3 months before. Which I'm just beginning to appreciate. My docs told me ages ago that the cystectomy would allow me to move on and I didn't believe them. But its turning out to be true for me. I don't smell of urine, rarely if ever leak in the day and go to the bathroom probably every3 to 4 hours.

I read Rosemary's post above (hi Rosemary!) and whilst it's true that I chose cystectomy (it said elective cystectomy on my notes) , I knew statistically that with recurrent, refractory BCG (resistant) CIS and G2/G3 it was the smartest thing to do. Before doing the BCG I told myself that if it failed and the CIS came back then I'd do the bladder removal. I actually let it fail twice! But I'm glad of the time it had given me becuase it let my mentally prepare for the removal. I think I somehow knew all along that it wouldn't work but it would buy me some time. My mind was focused also by having lost my father to BC a couple of years ago and a sister to lung cancer.

Openness in my daily life about what's gone on for me has been a major factor in my recovery. I think if i'd have treated my op as something to hide I would have added to my burden considerably. I sense that with the happier post-cystectomy people on this site. That and liking myself!

I'm getting ready for work right now and haven't read all the posts here so forgive if I'm covering any old ground.

all the best

tim

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12 years 4 months ago #6188 by Patricia
OK Alice...i just replied over on "NOw What"...i'll figure this out eventually!!....Pat

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12 years 4 months ago #6184 by Alice L.

hmmmmm. ... where have my post gone i sent to you Alice?
I looked up Great Bend Kansas and found only one urologist in the entire city.
I think part of your site is somewhere else...i'll have to find it....probably out in cyberspace!!...Pat


Pat, I don't think it is your posts that are out there in Cyberspace, I think it is me at the moment :-)

Pat, I am sure you got Dr. Leidig's name. This is the one who first treated me and was with me for over a year and then I started falling behind in my payments. My next 3 month check-up I went in and they refused to see me again unless I could come up with the $250.00 in full that I owed them. I couldn't believe how they could treat me that way when he knew I didn't have one clean cysto since I had been going to him. I was just horrified. He doesn't treat others here now. He does most of his practicing in Dodge City, about 2 hours West from here in which I would never go. I would drive to Wichita going East before going West.

I did get your messages, thanks soooo very much, and thank you Rosemary for following up with us.

Alice

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12 years 4 months ago #6181 by Rosemary
Pat,

Alice has another thread called, "Now what?" and you have a long reply in that thread.
Is that what you are looking for?

Just trying to help, but, a bit confused myself.

Your friend and buddy,
Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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