Home Forums All Categories Muscle Invasive Bladder Cancer when to say bye bladder

  • when to say bye bladder

    Posted by star on January 25, 2007 at 11:25 pm

    hey folks I am not here yet been super f so far but here is my thought. Since Feb 10th 06 been going with scopes and surgeries and bcg- whom has had several rounds before saying or told nope no more bladder has got to go? I am up for surgery 5 for 6 clumps this time and a stronger bcg treatment{4th round} is to follow I guess for the other doseage no go.
    Had any of you had some treaments prior to going with the options? I had the first surgery on the 10th then the 6 weeks recoop while then another surgeryfor he said still a mess in there with bcg 6 weeks then scope then surgery/bcg 4weeks then scope/surgery 3 clumps/ 3 weeks bcg/ then scope now 6 clumps and going for my annv date for cancer we are staritng all over again. I thought I had 4 surgeries but no.
    Had the ct again to check over all bladder won’t know yet.
    I am in women section and the superf sections to read more.
    I really do not care for the tumor{s} to break the wall and spread so that is why I am asking you folks if it was handed to you with no choice or some had to make the choice? Then living with how? I really am okay to loose the bladder it is my job concern for I carry the benifits for family. Does anyone work with also disability or mm your fine to work???I just really now looking into this whole other area and have not got all my facts on this. I will be out for 2 weeks for this tur so I shall be reading all I can now. THANKS LET ME KNOW. :-/

    timb replied 17 years, 5 months ago 3 Members · 2 Replies
  • 2 Replies
  • timb

    Member
    January 26, 2007 at 8:15 am

    Star
    I’m a man (43) but I can really relate to your situation. I had many tumours removed (40 or so) over the years and ended up trying BCG when they became more aggressive (higher grade). I also had CIS. I tried the BCG for about 18 months or so and when it kept failing I was faced with the same decision as you; whether to keep the bladder or not. Amongst the many reasons I went with bladder removal was the simple fact that if I was to go through such a big operation (and it IS a big operation!) then I wanted to do it when it had the best possible chance of curing the cancer. Unlike Patricia above, mine was always early stage (Ta) but with the CIS I knew statistically there was a good chance that it could become more aggressive.

    It’s a very very hard decision but I’m happy with the route I chose. I’m now 14 weeks or so out of surgery and my life is mostly back to normal. I still have some issues. Mainly nighttime continence with my neobladder but a cloud has certainly lifted and I’m just getting on with things. I’m back to work soon but I could probably, if pushed, gone back already. But I’ll go when I have the nighttime stuff a bit more under control

    Best Wishes

    Tim

  • Guest
    January 26, 2007 at 4:23 am

    Wow..your poor little bladder must be pretty scarred by now…thats a lot of tumors and TURB’s…..Have they all been stage 1..non invasive? It seems pretty obvious that the BCG isn’t working. I remember when they found my tiny tiny little flat papillary tumor that was so small the surgeon couldn’t find it at first…and it came back Stage 11 invasive …i was devastated. So i didn’t have a choice…the bladder had to come out. I’m now thinking maybe that was a blessing in disguise. I have an Indiana Pouch and we are quite used to one another now…its been 4 years. It does take a while to come back….they told me 6 to 8 weeks. I was very tired at first mostly from sleep deprivation as you’ve got to train the bladder….but it does get better and i do know people who have gone back to work in 2 months. I hope there are some others out there who can relate to your experiences with the recurring tumors. I hope Wendy and Karen Green can weigh in on this.

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