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  • Recommendation for Neobladder Surgeon

    Posted by cbled on December 13, 2008 at 5:09 am

    Hello, I’m new to this forum even though I’ve had TaG1 bladder cancer since 1996. Twelve years and many TURBS latter, I’m told I’ve developed CIS. I’m getting a second opinion, but if CIS is confirmed, I plan to have the bladder removed. I live in Boise, Idaho and need help locating a qualified, highly skilled neobladder surgeon. Can anyone help. Thanks. –Craig

    replied 16 years, 2 months ago 3 Members · 5 Replies
  • 5 Replies
  • 's avatar

    Guest
    December 14, 2008 at 3:20 am

    Craig …both the Skinners are listed in the Best Doctors in the U.S. and both have extensive experience with bladder cancer.
    At MD Anderson…Drs. Dinney and Grossman are pretty legendary.
    Probably the best at nerve sparing bladder surgery is at Johns Hopkins in Baltimore…Dr. Mark Schoenberg.
    If you would like their links i can give them to you or you can just go to their sites and type in their names.
    There’s a lot of good ones all over the country that deal almost exclusively with bladder and prostate cancer……depends on how far away from Idaho you want to go and if you can get follow up care in your area.
    Pat

  • Cbled's avatar

    Cbled

    Member
    December 13, 2008 at 11:02 pm

    Patricia, thank you for the information. I was glad to hear about the Dr. in Portland. I will check him out. I had heard of a Dr. Stein at Norris, but he passed away recently. He was by all accounts a gifted surgeon and I don’t know who at Norris is now their most talented surgeon. I have also heard of the Skinners and Donald Skinner is a legend in urology, but I don’t know about their talents as neobladder surgeons. Do you have any information about who is the best, most experienced neobladder surgeon at MD Anderson? –Craig

  • Cbled's avatar

    Cbled

    Member
    December 13, 2008 at 10:37 pm

    Nix, I have had three separate six week courses of BCG. I have also tried mytomican-C (sp?) and thiotepa (sp?). If I now have CIS, to me this would represent a significant progression to a more aggressive form of bladder cancer and warrant more aggressive action on my part. I want to act quickly enough to protect my upper tract. My Uro says I am at a fork in the road regarding treatment. Either continue to play with it chemically with another round of BCG or have the bladder removed. I’m leaning toward removing the bladder. –Craig

  • 's avatar

    Guest
    December 13, 2008 at 6:08 pm

    Craig…does your insurance allow you to travel out of state? There is an excellent surgeon in Portland, Oregon Dr. Daneshmand
    http://www.ohsu.edu/health/meet-our-staff/doctors/doctor.cfm?id=11019
    And another resource in California at USC/Norris who do hundreds of radical cystectomys a year…either of the Drs. Skillers…Eila or Donald
    http://www.usc.edu/schools/medicine/util/directories/faculty/profile.php?PersonIs_ID=1090
    http://www.usc.edu/schools/medicine/util/directories/faculty/profile.php?PersonIs_ID=1088
    Pat

  • nix's avatar

    nix

    Member
    December 13, 2008 at 5:32 pm

    Hi Craig
    I certainly don’t know of a neo-bladder surgeon in your part of the country, we are almost opposite ends of the US. It sounds as if you have made your choice, and maybe someone on the forum will know a good connection.
    Have you tried BCG? BCG is effective with CIS. It is the treatment of choice. Just something else to consider. Best of luck with whatever you decide:)

    Nix


    Nancy S
    Ta CIS
    dx Ta 11/06
    dx Ta CIS 10/07

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