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Bladder cancer

For people affected by bladder cancer to get together, ask questions, share experiences and support each other

What does the future hold for life without his bladder.

No. of entries: 4 | Posted on 30 Oct 2008 2:08 AM

What does the future hold for life without his bladder.

  • My father has had treatment following a diagnosis of an agressive bladder cancer, chemo and radio. He has just been told it has not gone, although no cancer can be found outside of the bladder. In the phone call informing him of the situation, he has been told he has two options - removal of the bladder or a 6 week course of treatment of chemo, focusing on the bladder. He told me he thinks that the medics appear to be siding with removal. I desperately want to support and help my dad, but I know nothing. What I need is information from those who have already been where he is now, along with details of experiencing life with a "bag", which I believe is perhaps his biggest fear. If anyone can share their experiences, I would be most grateful. Thanks.
  • Firstly, I'm so sorry to hear your dad's problems. I am in the same situation as your dad but I have no option other than removal. I have got some very useful information from the UROSTOMY ASSOCIATION who actually arranged for me to speak with a couple of chaps who had gone through the same thing as I'm about to. I can understand you and your dad's anxiety and fear, again, I've been there and to a certain extent still am. Through the forum and chat room here on this website, I've found a whole host of information and considerable support and advice, all of which have helped me come to terms a bit more with such a devasting diagnosis. There is also a very good American website called BLADDER CANCER WEB CAFE (Google it for exact address) you might like to try. If this experience has taught me one thing its that health professionals, from the lowest level up, will not tell you everything unless you ask and have a certain reluctance to get things done unless you keep on top of them. It is you right to be a pest and badger them for both information and action although I personally think that this should be an automatic right rather than one you have to impose upon them.

    Don't let you dad see any medical professional without somebody who serves his best interests being present. My wife always attends meetings with doctors when I go and I find her take on the who thing helps out a lot as do her very probing questions. Like "HEY MR DOCTOR IF MIKE WAS YOUR BROTHER/DAD WHAT WOULD YOU ADVISE NOW?".

    Life quality after removal, from where I stand doesn't look too bad now. Sure, I'm going to have to develop a new lifestyle regime but I'm sure I can come to terms with that. I'm in my late 50's going on 30 and I believe I can still have a fantastic quality of life after surgery. If you hget a chance read up on DAVE OF FORMBY's blogs and his page. I'm sure he'll post a reply to you anyway, he's a diamond guy like that. I hope he doesn't mind me saying that.

    So, thats it, for what its worth. I do hope your dad has a successful outcome which is as stress free as possible.

    Best of luck, Mike
  • Nurses will be in the LIFESTYLE CHAT ROOM at 2 PM today to run a discussion on LIFESTYLES with cancer. Would be a golden opportunity for you.

    Cheers, Mike
  • Thanks very much, that's a great start, I will certainly follow up the sites and blogs you suggest. Already I feel a bit more positive.
    All the very best and again, thank you.