Pat, we live in SW Florida NOT Irvine, CA. I am sorry for any confusion. I appreciate what your are writing, I truly do. There is a multidisciplinary team behind them. The cancer center here is affiliated with Mass General and Harvard Medical School Where we live has many Fortune 500 officers winter homes and they want and get the very best care possible. As a result they poured money into the cancer centers here just for the good quality care I cannot tell you how I appreciate your input and I am not debating or challenging you about any of your input. I am just asking questions because I simply don't have the answers. Thanks so much
I'm not debating your procedure in this process. First of all is it a T1G3 tumor or CIS or a T2 invasive tumor...makes a difference in treatment. And how on earth did you get to Irvine from Fl? I don't know much about your surgeon other than he specializes in prostates for the most part. There are 2 resources for Best Doctors..CastleConnelly
and US News and World Report which ranks hospitals according to their expertise in each field..look up urology and cancer
Urology is a bit of a misnomer as it includes everything from prostate, kidney, and bladder. USC is ranked 16 in Urology but is known for its experts in bladder cancer..the same with Memorial Sloan, and Johns Hopkins in Baltimore. MD Anderson is up there but not as many specialists in bladder cancer but the ones they have are great. Kamat, Grossman and Dinney.
Most of these people will get you in quickly and some might even advise chemo prior to cystectomy depending on the invasiveness of the tumor. You need to look at the pathology report to see exactly the stage and grade and what type cell they are seeing.
I know all docs you've seen may say the same thing but knowing where the top docs are is another matter and if there is a multidisciplinary team behind them and great pathologists to boot.
The best surgeon in Fl in down in Miami..Dr. Mark Soloway.
Thanks, Pat, I don't live on the West Coast in CA I do live in Florida on the Gulf Coast. Our surgeon is considering doing this robotically and has done a number of them as that was part of his fellowship. I am surely open to all input but every doctor we've gone to has said that the RC is the only alternative for Jim's situation and he will be having a PET scan today to see if there is any other involvement. This was just diagnosed on July 16th and we've been told it is an aggressive form of TCC. We are always at the mercies of the doctors and their expertise. I come from a medical background myself but it is so different when it is someone you love. Our doctor who will be primary surgeon is David Ornstein, MD website: http://www.davidornsteinmd.com/ I realize that he has not done 200 rcs annually but he seems to be very competent and we've been encouraged due to the aggressiveness that time is an important thing here. Not just by Dr. Ornstein. All the doctors we've seen here. We considered going to Moffitt Cancer Center in Tampa and Dr. Ornstein had not problem with that. He even gave us some names of surgeons up there. But when every doctor who isn't associated directly with the surgeons says the same thing, the best outcome possible which we've been told is 50/50 for 5 yr survival for Jim is by having an RC with prostatectomy and lymph node resection we felt that this is the route to go. The surgery is HUGE we know that but, it seems the best route to go for optimum outcome. Am again, open for ideas.
Jimswife....you're probably going to hate this post...but you've got one of the top centers for bladder cancer at USC/Norris Keck School of Medicine right there in LA. There are so many doctors recognised as the best by their peers. Dr. Inderbir Gill can do it laparascopically, Sia Daneshmand performs over 200 cystectomys a year, Elia Skinner and i could go on. Take a look at their bio's and maybe consider a second opinion and a bladder cancer specialist that is widly recognised in the field.
9 years 6 months ago - 9 years 6 months ago#33301by jimswife
I am new to the forum and glad that it exists. Frankly I am about to lose my mind here and need some people who have been there and done all this to help me out. My husband was diagnosed about 2 1/2 wks ago with Invasive TCC bladder cancer with involvent of the prostate. He is scheduled for RC and prostatectomy with a ileal conduit to be done.
I thought I was doing okay with all the doctors visits etc but today, it hit me like a 20 lb sledge! Our lives are changing in ways we never imagined. Our surgeons, I believe are very competent, the primary surgeon was at UC at Irvine and seems experienced. Any input or ideas or suggestions are so appreciated.