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Three months post-op

13 years 7 months ago #5183 by Patricia
Ricky....Yep they're working on it a Mayo.....but i can't get any info out of them. Probably a pigs bladder.......we do pretty well with their valves.........Pat

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13 years 7 months ago #5179 by Ricky
Congratulations GG. Glad to hear good stories around hear. Don't hear much about partials but good to see it's working for you.

Ok, let me ask a really stupid question to everyone, in all these years of treating bladder cancer, why do we not hear about artificial bladders? It would seem if there was an organ in the body that could be replaced with an artificial, certainly the bladder would be a good candidate, no? I mean it's just a reservoir for fluid. It doesn't do anything but hold our urine. Come on scientists!
Why not? Is somebody somewhere working on this?

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13 years 7 months ago #5177 by GG
I have CAT scans every three months.  My condition does not require radiation or chemo. since the tumor was so small and everything remotely close to my bladder tested negative.  The drs. are keeping a close watch on me, I feel like I'm in good hands.  My local urologist has taken care of the day-to-day procedures....removing the foley cathether and the first cystogram, etc.  He reports his findings to the Cleveland Clinic dr.; they make a good team.

I have never been much of a drinker, either.  (that's a good thing)  The first two months, I did have to go to the bathroom more frequently than pre-surgery, as incontinence was an issue...when I felt the urge, I couldn't wait.     My bladder has already increased in size, but it's still very different than before.  Pre-surgery, I very seldom awakened during sleep to go...now I go a couple of times each night.  I'm just beginning to 'trust' myself to go out without checking where the restrooms are upon entering a 'new' place.  I'm still not 100% comfortable with that situation.  My life-style has had minimal change, for which I am very thankful.

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13 years 7 months ago #5174 by Patricia
GG...glad you're doing so well. I'm surprised they did a partial cystectomy taking a l/3 of your bladder.......do you find you have to go a lot more frequently? I know what you're talking about with the labor pains....i had the same thing but was caused by drinking too much water...i was filling that new bladder to capacity very quickly as it hadn't stretched yet.....The nurses were so adament that i drink 8 8oz of water a day...my doc said...drink what you've always drunk......that stopped the labor pains.
Every 3 months is a lot of radiation. And if you want to see your report just ask the hospital for it...its yours...they'll give it to you. I always do that as it takes my local uro's 2 to 3 weeks to get back to me.
Continued success and feeling good..........Pat
P.S. I'm going back up to Cleveland next month .

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13 years 7 months ago #5171 by GG
I first posted the middle of January, a couple of weeks before my surgery on 1-24-07.  My tumor was a  leiomysarcoma and I was told there was no chance of saving my bladder.   I knew the tumor was rare and also read in the long-term, the outcome of having this type of tumor was usually not successful.  If you read about leiomysarcoma on this site, you'll see it occurs in .05% of all bladder cancers.  
I'll try to make this story a little shorter and give you the highlights.  The tumor was not as large as they saw on the CAT scan, as it had a large amount of inflamed tissue surrounding the very small malignacy.  Four lymph nodes were removed, all were negative, as well as several other tissue samples around the area of my bladder.  My right ovary was removed (I didn't need it anyway) along with my appendix...all negative for cancer cells.  All the inflamed tissue surrounding the tumor was removed and also tested negative for cancer cells.  While in surgery, the doctor talked to my husband and told him things were not as bad as they had expected.  The surgeon at the Cleveland Clinic and my husband decided we should try a partial cystecomy.  (I knew this was a long-shot before the surgery, but my husband and I talked about the possibility and what we should do if given the option)  Since there were no malignant cells, other than the tumor itself, about 1/3 of my bladder was removed; also, the tumor was around a ureter, so that had to be removed and re-implanted.
My biggest complaint was the foley catheter I had to live with for two weeks after surgery.   I had bladder spasms like crazy.  No amount of pain medication helped those suckers and I was having them about every twenty minutes.  I told my husband they were like labor pains without anything good happening after the pain was over, except to expect another one.
I am so thankful that none of the post-op expectations occured.  The surgery was about seven and a half hrs. long.  I went from a couple of hrs. in post-op observation to a regular room.  I required no blood transfusions, no ICU and my hospital stay was only five nights.  I am most thankful to one of the posters on this forum who told me to take plenty of pillows for the car ride home.  (four hrs.)  I padded myself in the backseat and was relatively comfortable.  
I was back at work part-time, three weeks post-op.  After the foley was removed, my healing was remarkable.   :)
I'm not saying this thing was a big picnic, it was no fun at all.  I'm just happy things were not as bad as they looked on the CAT scan.
I'll have CAT scans every three months for the first year.  I had my first one two days ago and have not received the report yet.  I have a little more anxiety than I expected...waiting is not easy.  
My expecience at the Cleveland Clinic was very positive....if one can say anything is positive about having a partial cystecomy.  I was given wonderful care and place runs like a well oiled machine!  (BTW-I still have my tatoo to remind me of what could have been and of course the long scar on my abdomen...that's a small price to pay in my case.)
If you have been newly diagnosed, you need to be active in the decisions that are made concerning your condition.  Talk things over with your loved ones before surgery in case an option like mine is given to you.  My local urologist suggested I get a second opinion and went as far as getting the appointment for me at the Cleveland Clinic.  (wonderful man that he is)  A second opinion is a 'no brainer' with bladder cancer as far as I'm concerned.  I was in Cleveland within two weeks of my diagnosis with the leiomyosarcoma.  And, not all bladder cancers start with blood in the urine....I had none.  I presented with pain because of the location of the tumor being on a ureter and it had invaded the bladder wall.  (not a good thing)  
Well, that's my story so far.  One of the questions I had on my first post was, will I ever feel normal again.  My answer:  Absolutely, 100%.

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