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Deciding Between BCG and a Radical Cystectomy

Deciding Between BCG and a Radical Cystectomy

In an interview with BladderCancer.net, Shirley describes a phone call with her doctor during which he explained the two choices she had to treat her bladder cancer: BCG treatments or bladder removal surgery (a radical cystectomy). He explained the pros and cons of each option to allow Shirley to make an informed decision. Watch along to hear her story and how she made her choice.

Comments

  • nancycccslp
    4 months ago

    This was surprisingly unhelpful.
    Stage?
    What had been tried over the previous 12 months that “stole” her life?

  • Sarah Wallin moderator
    4 months ago

    Hi @nancycccslp, these are great questions about things that the video does not cover. Shirley (from the video), is a writer for us and has been very open in sharing the details in her written articles. I’m sharing with you 2 articles which should give you more details and answer your questions. In this article (https://bladdercancer.net/living/my-treatment-options-what-i-learned/), Shirley talks about having recurrent UTIs to the point of antibiotic resistance, blood in urine, weight loss, and weakness that she battled with for 12 months prior to her bladder cancer diagnosis. In this one (https://bladdercancer.net/living/how-radical-cystectomy/) she talks about getting the results of her TURBT, which were Grade 3 (highly aggressive), Stage 1. Hope this helps you wherever you are at in your journey! We are here to support you if there is anything else you would like to discuss or learn about. -Sarah (BladderCancer.net Team Member)

  • raymond
    4 months ago

    I had cystsectomy from get go 9 years ago. Had som leakage problems but once got the right pouch, had no more problems. I think cystecyomy is way to go. Still play golf! Square dance and I’m 75 years old.

  • Sarah Wallin moderator
    4 months ago

    Hi @raymond, That’s great to hear you had no problems once you got used to the pouch. It sounds like you’re still able to enjoy the activities you love, which is great! Square dancing sounds like a fun time. Do you dance with a partner? -Sarah (BladderCancer.net Team Member)

  • Sarah Wallin moderator
    4 months ago

    @raymond, that must be delightful! Thank you for sharing with me. -Sarah (BladderCancer.net Team Member)

  • raymond
    4 months ago

    Yes we Square dance as a couple.

  • munch
    4 months ago

    No real problems with the stoma, you get used to it, I day better the cancer out than in!!
    My advice would be to ask for tips on managing, do not just put up with it…. there will be an answer to any problem you are having

  • Sarah Wallin moderator
    4 months ago

    @munch, this is great advice! Feeling comfortable with managing things day to day is so important. I’m glad that you’ve gotten used to your stoma, and that you feel positively about your decision. If you ever feel like providing some insight to others, we do have members who ask about life with a pouch fairly often. Here is one (https://bladdercancer.net/q-and-a/neobladder-pouch/).
    -Sarah (BladderCancer.net Team Member)

  • munch
    4 months ago

    Yes everyone is different, but research is showing some interesting ideas.. I had BCG x 12, TURBT, radiotherapy, all to no avail. Had i had a cystectomy straightaway, I would NOT have genital skin burn, or damaged bowel. These problem have caused a lot of pain, digestion problems limiting what I can eat, sexual activity NIL, etc etc.

    I am 18 yrs down the road, but quality of life due to the treatment,NOT the stoma, has been poor

    I can only speak from my point of view.

  • Sarah Wallin moderator
    4 months ago

    @munch That does sound like a lot you’ve been though…not only the treatments themselves but the lasting side effects too. It can be really tough to deal with all of those things that you listed. Really appreciate you sharing your point of view on this. Many are afraid of getting a cystectomy, but hearing this might make them feel better about deciding to. How did you adjust to having the stoma? Did it get easier as time went by? -Sarah (BladderCancer.net Team Member)

  • munch
    4 months ago

    Go for cystectomy every time, better than BCG burn and soreness

  • Sarah Wallin moderator
    4 months ago

    @munch, it’s important to remember that everyone is different, so the best treatment route for one person may not be the same for someone else. Did you opt for the cystectomy? How did it go for you? -Sarah (BladderCancer.net Team Member)

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