Home Forums All Categories Men and Bladder Cancer Finding a good surgeon

  • Finding a good surgeon

    Posted by efoster4242 on August 4, 2011 at 12:36 am

    This may be helpful for some in search of an accomplished doctor in the field. I was told about 6 weeks ago that the treatments, mainly BCG, for my bladder cancer did not work and that the treatment would now be the removal of my bladder, prostate, and associated lymph nodes. Since that revelation I have been on a search for the doctor to do the procedure. I started in my home town and found a doctor that seemed knowledgable on the removal and had done about 12 in a year. Not knowing any better that seemed to be somewhat okay. He also told me a female associate would do the construction of the neo-bladder and I had not talked to her. In the mean time I had an appointment to the Cancer Treatment Center of America thinking they might have some new treatment where I did not have to have the bladder removed. It was in Chicago and it turned out to be a dead end. They confirmed the bladder removal as a treatment and they did not have a doctor that did the type of surgery. I cut my planned visit short and came back home disappointed. The next step was to find a well known facility known for cancer treatment and specifically bladder cancer that might be somewhat nearby. I was recommended John’s Hopkins and MD Anderson. Since I am in Louisiana and only about 4 hours away from MD Anderson I set up and appointment with them. By the way I was told that I had several weeks to decide what doctor and what procedure so time was not an issue. I went to MD Anderson and it was night and day from any other place that I went. The first days visit was the usual gathering of information, but also on the first day I met with one of 3 doctors that was recommended to me from this forum, Dr Kamat. I was very impressed with his knowledge of the desease, methods of treatment, and post surgery complications. He spent a long time with me going over everything. He also told me that he has done about 250 of the neo-bladder surgeries this year alone. He had with him an associate doctor that has worked with him for the past couple of months learning the techniques from Dr. Kamat so that he could go back to his town be proficient at the procedure there. Both of them gave me a great deal of confidence that this cancer can be dealt with and that life will go on with a good bit of normalcy. They made me aware that there could be complications that are not seen yet and I could come away with a pouch. They don’t think so but its a possibility.
    Finding a doctor like that within about 250 miles of home is a big plus. The doctor I chose is Dr. Kamat with MD Anderson. My surgery is scheduled for August 24 with a pre-surgery cystiscope on August 11. Dr. Kamat doesn’t want to just trust the x-rays and CT scans, he wants to see for himself what he is dealing with. Another thing that impressed me about him. So I have a good deal of confidence going into this at this point. Don’t think there still won’t be apprehension but that is just part of the beast. The best thing I have found is to educate yourself on the cancer, the treatment, the complications, and find a good experienced doctor. Explore this site and read about the different treatment options and the experiences people are describing here for you. Also participate if possible in the Sunday chat. It helps to talk one on one with people like yourself dealing with all of this. This site helped me tremendously and I am forever in all of your debt for helping me deal with this.
    Thank you all.I now have a plan and am ready to proceed.

    Alan replied 13 years, 6 months ago 7 Members · 11 Replies
  • 11 Replies
  • Alan's avatar

    Alan

    Member
    August 15, 2011 at 10:14 pm

    The Comal River has been jammed this past summer with the drought on the Guadalupe! 10000+ a weekend day to where the authorities have actually had to restrict access. Keep us posted! We will both look at your situation as a crook in the road by this time next year!


    DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
  • efoster4242's avatar

    efoster4242

    Member
    August 15, 2011 at 1:01 pm

    You brought a smile to my face Alan. You brought back some fond memories of my childhood. I used to live in San Antonio in the mid 50’s. One of our favorite things to do was to head to New Braunfels and the swimming pool lake there. Back then the swimming area was a dammed up river. Nothing like it is now, but loads of fun in those days. Everyone would pick a spot under the trees to set up their picnic area and all would enjoy the swimming and diving in the pool.
    I am pretty confident in my selection, so now I am just waiting till the day comes. Nerve wracking at the least. thanks for the note and I hope all continues to go well with you.
    Ed

  • mmc's avatar

    mmc

    Member
    August 13, 2011 at 7:06 pm

    Great choice Ed! All the best for a successful surgery. You’ve done the homework and are ready.

    I can tell you that it is way scarier on your side of the surgery than it is on mine. It’s an investment in your future (which you get to have much more of).

    Mike


    Age 54
    10/31/06 dx CIS (TisG3) non-invasive (at 47)
    9/19/08 TURB/TUIP dx Invasive T2G3
    10/8/08 RC neobladder(at 49)
    2/15/13 T4G3N3M1 distant metastases(at 53)
    9/2013 finished chemo -cancer free again
    1/2014 ct scan results….distant mets
    2/2014 ct result…spread to liver, kidneys, and lymph system

    My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
  • Alan's avatar

    Alan

    Member
    August 13, 2011 at 3:16 pm

    Ed,

    You have done very well in your choice. I live the other direction about 180 miles from Houston in New Braunfels, TX (home of Schlitterbahn)! While I am fortunate that my local URO is well versed in BLC and I have been able to keep my bladder, MD Anderson is my backup. Also, I have sent or had a few friends sent to Dr. Kamat. You are in great hands. Dr’s Grossman and Denney are also well respected also. You will do just fine!


    DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
  • catherineh's avatar

    catherineh

    Member
    August 12, 2011 at 6:29 pm

    Ed… Even though this is definitely major surgery, you can set aside much of the pre-surgery jitters knowing you have done your due diligence and assembled a team of doctors who are tops in their fields. You wouldn’t be human if you didn’t feel some anxiety going in, but you have done your part at this point.

    Enjoy the beach!!!


    Best wishes… Catherine

    TURBT 1/21/10 at age 55
    Dx: T2aN0M0 Primary Bladder Adenocarcinoma
    Partial Cystectomy 2/25/10
    Vanderbilt Medical Center
    Nashville, TN

  • efoster4242's avatar

    efoster4242

    Member
    August 12, 2011 at 1:16 pm

    Hello Flyer, I just got back from MD meeting with more doctors, cardiologist, anesthesiologist, pulmonary doctor. All have approved the surgery, so now comes the hard part. Waiting for Aug. 24 to come while thinking about it. My wife and I will be headed to the beach the week before to just enjoy the time together.
    I hope you get your wings back soon. I know you are antsy to get back in the air. Thanks for the info on the post surgery. I can prepare better knowing how each person dealt with the problems and of course what potential problems I will face.
    Glad you are on your way to full recover. Long life is what we are looking. I will post as I go along with this procedure.
    Have a great week.
    Ed

  • GroundedFlyer's avatar

    GroundedFlyer

    Member
    August 10, 2011 at 2:46 pm

    Ed,
    Congratulations on finding a surgeon you trust. If the local uros hadn’t been such asses, I would not have done the research to find someone better and would have ended up with an Indy pouch and no bilateral nerves. As it is, I’m seven weeks post neobladder surgery and learning to pee again.

    The first month was the worst with stomach upset, marginal bowel function and general malaise. Life is significantly better after the catheter is removed and I am looking forward to a long life.

    Flyer

  • efoster4242's avatar

    efoster4242

    Member
    August 4, 2011 at 12:22 pm

    Duke, No guarentees in life. We can only do what we can do and try to do it the best that we can. I am so glad you are doing so well. I have hopes and aspirations of that at this time. I know there will be a pretty good learning curve and a lot to deal with at first, but knowing that going in will help me prepare and cope. You have come a long way and I am glad your outcome is so positive. Gives my hope for the same later on. I’ll let you know how it goes.
    Ed

  • efoster4242's avatar

    efoster4242

    Member
    August 4, 2011 at 12:18 pm

    It was very challenging to just find information at first, but then I found this site and things started to fall into place. You are right Sara most people simply follow the original physicians advice and go blindly into it. Knowledge is the key. It took a while, but I am comfortable with my decision and that’s half the battle. I feel I am where I should be for this procedure. Thanks for the encouragement. I will post in here and on the Sunday chat my progress. Have a great week!!
    Ed

  • dukel's avatar

    dukel

    Member
    August 4, 2011 at 3:52 am

    efoster, Can,t give you any guaranties, but will give you as much hope as possible. I am about 19 months post neo. The going early on was not easy! Just go in knowing you’re in for a few rough weeks. Every day you will feel better. At the stage I am now, I could have never hoped to have recovered so completely. I have been very fortunate. I can only hope that you and others are as fortunate.
    Hope all goes well for you!
    Duke

  • sara.anne's avatar

    sara.anne

    Member
    August 4, 2011 at 1:02 am

    You are a very lucky guy! Not to have found a good solution to a really lousy situation, but to have the foresight and guts to search until you have found it!!!! Too many people accept what the first doctor they see says, without really investigating his/her background and the other options available. While it won’t be a Sunday picnic, you couldn’t have done better!!!

    We will all be here waiting to hear how you are doing and, as you have already found out, we are not shy with the advice!

    Sara Anne


    Diagnosis 2-08 Small papillary TCC; CIS
    BCG; BCG maintenance
    Vice-President, American Bladder Cancer Society
    Forum Moderator

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