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facing bladder reconstruction
please bare with me as i am new to this computer not very technical lol not so new to bladder cancer as i have been dealing with it for nearly a year by myself i am ova the moon to hav found this site my friends r laughing cos i am talking more to my bladder cancer mates than iam to them december 08 i had hysterectomy and they were suprised to find cancerous tumors in my ureter as i had no symptoms at all so 6 weeks later i had my kidney out after a speedy recovery from both ops i began a 6 week course of bcg this was a sucsess sadly my 2nd course has failed and they r waiting on biopsy results tyey hav told me to prepare myself for bladder reconstruction still iam fit and well with no symptoms wotsoever
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11 Replies
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It must be very disheartening to be going through it all over again, I’m glad you’re already at a good centre.
I grew up in York, I still miss the the heather and the sheep! -
hi mona i am at one of the biggest cancer hospitals in the north east of england so will hav to trust the consultants i have seen they were marvellous with me wen i had m y kidney out i am just blown away i hav to hav my bladder out so soon i thought i was over the worst apparently not just seem to get back to normal then wam bam thank u mam its bac :angry:
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Thanks Mona…i did read that about the UK…also the same thing is happening in Germany. All bladder cancer patients are being referred to major institutions that perform many RC’s and deal with bladder cancer. Thanks for that reminder……Pat
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Hi Suzy, I’m British but have been living in the US for almost 5 years. You probably know already, but thought I’d mention it anyway, that since last April all patients (apart from mental health and maternity) have a choice of hospitals which best suits their need. This is great as you can research with your GP where the best place for you to go is and get referred there,
Good luck,
Mona -
Hi Suzy!
I am UK based and had a neobladder op in August 2007. As Pat points out there are advantages and disadvantages of all operations. I am very happy with my neobladder.
Where are you based? I am on and off the site a lot at present so try and PM me or join chat if I am around. Happy to help!
Betsy Mae
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Suzi i have the Indiana Pouch. Its also made from intestine and you have a stoma which you have to catherize from. I chose a navel stoma as my body looks perfectly normal and its a pretty convenient place to have it. I am biased toward the Indiana for women. My pouch took a while to get trained but its certainly doable. I cath maybe 4 times during the day and i sleep 8 to 9 hours without having to get up. I have never had a UTI. I have yet to meet a female with a neo who doesn’t have to get up many times during the night to empty. The stats haven’t improved much in the six years i’ve been researching neo’s and Indiana’s. For women only about 33% of neos are completely successful..meaning you don’t have to catherize on a regular basis..women tend to be hypo or hyper continent…it goes both ways. And urine that gets trapped tends to breed infection and UTI’s. Surgeons tend to sell the neobladder to women..the Indiana is more difficult to do.
Just do the research and decide what you can deal with and then make sure your consultant knows how to do it.
Many people have the outside bag and seem to adjust just fine.
They keep taking these polls saying that we adjust to whatever we have but truthfully i’ve yet to find one woman with a neo who doesn’t have to catherize anyway or who hasn’t had multiple UTI’s. If they’re out there i’d like to hear from them and get their surgeons name.
Pat -
wot do you think about pouch and neo ?
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Well Suzi……if it is high grade and stage and into the muscle wall then yes it should come out. But wait for the pathology report. If it is still low grade and stage there is a possiblility that Mitomycin might work or another round of BCG. You need to be very pro-active in your care.
How many reconstructions does he do a year? How many women has he done? Can you have a choice between an Indiana Pouch or a neobladder?
Pat -
thank you for the info i had 1 tumor on bladder wall cos bcg failed so early pending on stage and grade but he is pretty convincing he wants it out
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hello my consultant said he would probably do the new bladder from my bowel and i would hav no bag i had 1 tumor on bladder wall but he seems pretty sure he wants to take my bladder because my bcg has failed so early?
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Hi Suzy….what a journey! I understand you are in the UK and under National Health Care so i’m not all that familiar with your choices of doctors or institutions. I’m hoping some of our other UK members will chime in soon.
A lot depends on your path report and the stage and grade of the tumors…how many returned?
Many of us have undergone reconstruction. You might want to familiarize yourself with the different types of diversions if you have a choice. That may be up to your surgeon. This from The Cleveland Clinic..
http://my.clevelandclinic.org/services/urinary_reconstruction_and_diversion/hic_Urinary_Reconstruction_and_Diversion.aspxPat
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