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new diagnosis male bladder needs advice

Advice and info please. Yes I am seeing doctors and getting a second opinion but the best info comes from others that have been there. had cancer before elsewhere.
I have been recently diagnosed with pT2 after a Transurethral resection of bladder, with a stint placed to allow the Kidney to drain. They have recommended a Radical Cystectomy....don't want that! The tumor has entered the muscle.
Has anyone gone through this and did something different?

  1. markct63 I had a surgery for another cancer that I found out down the road I could have avoided with chemo-that I eventually had to do anyway. For your peace of mind I would suggest you find a reputable place for second opinion. Good luck. DanFranke,

    1. fabulous advice! Thank you for sharing this and for your stand for the community. I hope your own health is doing fantastically and you are enjoying bright, joyful days. All the best, Charles (Moderator /

    2. @Charles Anthony Ulloa - Thank you for this advice. I am so sorry for the loss of your mother. I chose to go with RC at stage one high grade to avoid what happened to her. BCG was an option but my doctors were very clear that it may not work and I might end up with a higher stage cancer grade. I chose RC as it was the right decision for me. Nearly 8 years later I am as active as I was before "C"and cancer free. It is a personal choice and I completely understand those who chose other options. My best. Linda Urbanski ( moderator, team member)

  2. My Husband also has bladder cancer that is in the muscle. He is going through some clinical trials that consist of an antibody that triggers the cancer cells one week and then the next week gets cisplatin (chemo). EVEN if this entirely removes this cancer, he is still having a radical cystectomy because of the likelihood of this cancer reoccurring. Instead of an ileostomy though we are hoping he will be a candidate for artificial bladder. Since I am a retired R.N. we would prefer that he not have an ileostomy due to the likelihood of infections r/t inside of the body being brought outside. Men are generally more of a candidate for this than women. I don't know if this is helpful or not but thought I would respond with what we have discovered thus far.

    1. sorry for your loss. Laura, Moderator,

    2. thank you for sharing your plans. I absolutely love that you and your husband are taking his health seriously and considering RC. I'm sure no one wants to *have* to go through that, especially after seeing how Mom resisted RC. My concern is that it cost her her life. I would hate anyone else to be in that same boat. Please keep us updated with your journey. Wishing all the best, Charles (Moderator /

  3. @markct63 - Have you discussed other options with your doctor or is RC the only viable option that was provided ? If you are set on not having RC, I would suggest discussing other options with your doctor as well as considering getting a second opinion. I hope that you are able to find other options that you can consider. There are many of us on here who have had RC and are living a great full life but I certainly realize that it is not for everyone. It is your choice in the end so again I hope that you find other options that are available to you. Please keep us posted on how things turn out. We are here to support you all the way. My best to you. Linda Urbanski ( moderator, team member)

    1. I have seen both the Yale and Sloan Kettering Doctors. Sloan stated that he wouldn't know what he was doing until he got in there after chemo, and I would know until i awoke from the surgery......Yale had me come back to do another scraping and see for himself the damage and possibilities. After he saw he is now reviewing the slides and other films etc. He feels that a radical may not be the best thing for me, but will follow my progress and may take another non-invasive look before he determines the outcome. He and his team are also looking at my chemo regimen for possible adjustments. For me this proactive approach is what I need.

    2. Hi. How are you getting on? Laura, Moderator,

  4. I understand it might be daunting and you are right to explore all options. I can tell you, I live a good life after RC, should that be the option you select. Wishing you well. Laura, Moderator,

    1. @markct63 - I am happy to hear that you have options. Please let us know how you are doing. My best!! Linda Urbanski ( moderator. team member)

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