Announcement

Collapse
No announcement yet.

Im thinking of going to USA for RPLND

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Im thinking of going to USA for RPLND

    Im from the UK and have been recommended RPLND. Ive now done some research and realised its a pretty serious surgery to do.

    What i want is the most experienced surgeon now. I just dont think my doctor could possibly have the right experience being from a quite a little town in England. Ive heard of Dr.Foster from Indiana or whoever else from Indiana and am considering going there. I know insurance wont pay but money aint really an option, with this being cancer. Would any experienced Dr in USA accept me? How long would i have to wait?

    I just thought id ask for help. What do you think? Is this possible? Would it be dangerous to go back on a plane, let says 3 weeks after the RPLND or am i being too paranoid.

    Or does anyone from the U.K. know any surgeon whos experienced in RPLND?

    Note: I have lost both of my testicles so ejaculation is not possible anyway. So shall i just go ahead with it here, seeming that this is the biggest fear with RPLND and that will not be a matter for me.

    But im worried about ending up with something else serious happening to me. Whats the second and other big risks with RPLND?

    Any help with be appreciated. Thanks.

  • #2
    Richard Foster at IUCC

    Joel Sheinfeld at Sloan-Kettering

    check out the expert section at



    good luck, thoughts are with you
    Age 33, Right I/O Mar '05, 90% embryonal, 10% teratocarcinoma, Surv until 4 mo CT (+), 3 x BEP Aug/Sep '05, CT 10/05 ok, CT 2/06 ok, CT 3/06 ok, CT 6/06 ok, X-Ray, Blood 8/06 ok, Sperm Count 09/06: Low but active, CT 10/06 ok, X-ray 12/06 ok, CT 02/07 ok, X-ray/blood 4/07 ok, CT 6/07 ok, X-ray/blood 09/07, CT 10/07 ok, CT 4/08 ok, CT 10/08 ok

    LAST NIGHT I DREAMT 1000 LIES
    I CAN SEE THE DAWN
    THROUGH A DIFFERENT SET OF EYES

    Comment


    • #3
      Adrian

      When you see your first consultant urologist pre RPLND ask for a second opinion with Tim Christmas at Hammersmith Hospital London. Thats what I did.

      I too was going to go to the States for my RPLND if he wasn't prepared to do it. I think he is the best the UK has and at the time of mine one year ago he had done over 300.

      Best Wishes.

      Mark.

      (for a good account of his work, see www.timstollery.com )

      Comment


      • #4
        Thanks a lot nuts.

        I was hoping for a good recommendation from the UK. Ill check him out. 300 seems like a good amount.

        Comment


        • #5
          [email protected] I think does about 2 maybe 3 a week. I was his 3rd one week.
          Treatment
          Non-Seminoma, Stage II
          Right Guy Removed
          4X BEP ending 6/3/2005
          RPLND 7/1/05

          Comment


          • #6
            Originally posted by Adrian
            Note: I have lost both of my testicles so ejaculation is not possible anyway.
            Ejaculation should still be possible, even though sperm production isn't. You are on testosterone replacement therapy, right?
            Scott, [email protected]
            right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since


            Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!

            Comment


            • #7
              Dr. Sheinfeld at Sloan did the RPLND on my son last July, and he has had no side effects....was able to do the nerve-sparring.....Mary Ellen

              Comment


              • #8
                Ill be going on something called Testogel (Androgel) soon. Hopefully everything goes well with that. When i get on that, ill do some 'scientific testing'.

                Yeh my doctor did say some bit of ejaculation could be possible from the fluids from my prostate glands and other glands, but not real ejaculation though. So if anything happens in the RPLND it wont really affect me THAT MUCH. Im just wondering about all the other known risks.
                Last edited by Adrian; 03-16-06, 10:01 AM.

                Comment


                • #9
                  Well, it is a big surgery, no doubt about that. I had mine two weeks ago (performed by Dr. Sheinfeld). The surgery took 5 1/2 hours, and the first few days after the surgery are a bit tedious, but the morphine makes it a lot easier. I'm off the pain meds since about a week and only take an occasional vicodin at night when I can't sleep.

                  As with any surgery there are the usual risks of infection, forgotton instruments in your body and the like. Since surgery is close to the vena cava there is a risk of internal bleeding. But these risks are fairly small, and the expertise of your surgeon minimizes them even more.

                  The most common side-effect of this surgery is an obstruction of your digestive system - I suffered from that on Sunday and it made me go back to Sloan for a few days. Basically your intestines shut down and have to be restarted slowly. If you eat too much, or the wrong stuff, they might choke and shut down again. That's the most annoying part of the whole ordeal.

                  As for the choice of going to the US, Malcolm Gladwell wrote an interesting piece in the New Yorker a while ago (and I think it appeared in his book Blink) about the difference between merely good and excellent surgeons: Article

                  With regard to mobility, my release papers stated: No driving for 4 weeks, no heavy lifting (5-10 lbs max), and some dietary restrictions. Traveling 3 weeks after surgery (in particular trans-atlantic) might be a bit soon (assuming you have someone to carry your bags), but your mileage may vary.

                  Best of luck

                  Michael

                  Comment


                  • #10
                    Originally posted by Mizu
                    With regard to mobility, my release papers stated: No driving for 4 weeks, no heavy lifting (5-10 lbs max), and some dietary restrictions. Traveling 3 weeks after surgery (in particular trans-atlantic) might be a bit soon (assuming you have someone to carry your bags), but your mileage may vary.
                    Interesting restrictions. I had my RPLND in Germany and flew back to the states about 12 days after the operation. I did have help with my suitcase though

                    I spent the night in a motel near the airport where I flew in and then the next day drove almost 4 hours home.
                    I/O Aug 04 (nonseminoma), bilateral RPLND Sep 04, Surveillance

                    Comment


                    • #11
                      Well, Sloan is known to be very conservative with regards to how you should behave, what you should eat etc. (which I believe is a good thing). I think the driving restriction has more to do with the Vicodin prescription than the surgery, but then again seatbelts may feel rather uncomfortable on the cut.

                      Comment


                      • #12
                        I was off pain killers pretty early. I left the hospital 8 days after the surgery and the only thing I took after that was a mild laxative. Wait, does wine count as a pain killer?

                        You're right about the seatbelt. Between the RPLND and orchiectomy scars, and hair growing back, I remember tying up the seatbelt to the window crank to keep it from putting pressure on my waist.
                        I/O Aug 04 (nonseminoma), bilateral RPLND Sep 04, Surveillance

                        Comment

                        Working...
                        X