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  • "Centers of excellence/expertise" for RPLND

    For some reason I can't get the pinned discussion on this subject to load, so I was hoping for some guidance. My oncologist has recommended RPLND, and I'm meeting with a urologist at Duke to discuss the surgery on September 5th. I'm also looking into my options regarding travelling to receive the RPLND elsewhere though. I've heard a lot about IU and Sloan Kettering, but are there any other hospitals that I should be considering? And which doctors should I try to get in with at each of these places?

  • #2
    Hopkins does a lot of them. Personally, I'd go to IU if I had to do it, or to Sheinfeld at Sloan. I haven't been impressed with Duke and how they've handled some TC cases. But that's more on the oncology end, not the surgical part. I don't know what their expertise is in RPLND.
    Diagnosed at age 31. Treated in NYC. Now living in Ottawa, ON, Canada.

    7/1/2015: felt tiny lump on side of R testicle
    7/30/2015: Ultrasound shows 2 intra-testicular masses.
    7/31/2015: tumor markers normal, CXR clear
    8/5/2015: R orchiectomy
    8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
    8/14/2015: CT abdomen/pelvis clear, Stage 1b
    8/24/2015: started 1 x BEP

    Comment


    • #3
      As RJKD mentioned there is also Hopkins, Dr. P is a great doctor. There are few men who have had surgery in NC, hopefully they will chime in.

      If my son and I could do it again, we would have traveled to IU. My son's surgical Urologist is a great doctor, but the hospital care was not good post surgery. They left a 17 year old in the recovery room for 5 hours waiting for a room, and only let me see him 1x after I pleaded.
      I would think a center of TC Excellence that deals with a lot for RPNLDs vs 1-2 a year is the way to go if insurance will cover.
      17 year old son Grant dx 12/21/16
      pre/o markers 12/21/16- HCG:1065.15,AFP:298.8,LDH:1119
      pre/o CT Scan 12/22/16 normal
      r/o 12/22/16
      Post r/o Elevated Markers with INCREASE 4 weeks post r/o;
      PATHLOGY: mixed maligent germ cell 8.6 x 6.2 x 5.9 cm

      -80% Embryonal, 10% Yolk Sac, 5% Teratoma, 5% Choriocarcinoma w/LVI within Spermatic Cord and invasion into Rete Testis
      2nd CT scan on 1/24/17 3 nodes 2 over 2.5, one over 3.5
      BEP x 3 1/27/17
      Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
      2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
      Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

      Comment


      • #4
        We live in the Charlotte area and my oncologist was pushing me towards Duke and Chapel Hill. We made the decision to go to IU and we're happy we did. One of my fears for my son was becoming retrograde so I figured Dr. Foster had such expertise that there would be a higher chance that all would go well in that area. The hospital staff was terrific and they put my son in a private room post op where we could stay with him in the separate room connected to his. I was very pleased with my son's stay.
        9/6/13 Left I/O. 18 year old son diagnosed 9/13/13 Stage 2C. Path report: embryonal and yolk sac with spermatic cord involvement and lymphatic invasion BEP x 3 finished 11/25/13. PC-RPLND with Dr. Foster at IU on 1/21/14. Found only dead cancer! Surveillance as of 1/23/14. All clear as of 5/2017.

        Comment


        • #5
          I had RPLND surgery at Duke by Dr. Rampersaud this past February. Due to the locations and sizes of some of the tumors, the surgery was complex, from what I understood. He was very serious and focused prior to going into surgery, and he told me afterwards it was quite tense in the OR. He was able to spare the nerve, and I have had no other complications. In summary, it couldn't have gone any better. It was roughly a 6 hour surgery.

          When we had a our baby at our local hospital a few months later in May, one of my wife's nurses who saw my file said that her son had TC. He had just had RPLND performed recently by Dr. Rampersaud as well with success. It's a small world!

          My personal experience with Duke and my doctors was fantastic. RPLND surgery is a major one, though, so it is definitely smart to consider your options.
          9/28/16 - Diagnosed Stage 3C. 10/10/16 - Left I/O. Pathology pure seminoma but treated as non-seminoma due to aggression and high AFP at 58. Largest tumor at 11x9cm. 10/28/16 - Emergency VIP chemo in hospital and 3 additional in-patient cycles. 2/17 - RPLND and tumor masses all dead. 3/17 Remission and surveillance. 7/17 - First imaging clear.

          Comment


          • #6
            My son will have his surgery with Dr. Clint Cary at IU mid-September. He has come highly recommended by Dr. Einhorn as well as several survivors and care-givers on some of the other TC pages I follow.
            Mom to Zachary - dx. at the age of 15 - Stage IIIC mixed germ cell
            5.10.17 - Initial diagnosis
            Baseline markers: BhCG: 43,882 AFP: 138 LDH: 328

            5.16.17 - Left Radical orchiectomy (total tumor size 7x5x4cm)
            5.31.17 - CT Scan showed mets to retroperitoneal LNs (5.7x6.4x9.4cm, 1.7x2.6x3.5cm, 3.1x4.5x6.1cm)
            PATH: Mixed germ cell (75% teratoma, 15% embryonal ca, 8% yolk sac tumor, & 2% trophoblastic tumor) Spermatic cord margin, neg. Germ cell neoplasia in situ present.

            Post-op markers: BhCG: 73,837 AFP: 38 LDH: 412

            BEP#1 6.9.17 BhCG:77,721, AFP 34
            BEP#2 7.3.17 BhCG: 210, AFP: 6
            BEP#3 7.24.17 BhCG: 19 AFP: 3
            BEP#4 8.14.17 BhCG: 4.59 AFP: 5

            8.28.17 BhCG 2.46, AFP 6
            9.7.17 BhCG 1.78, AFP 3

            RPLND 9.14.17 - path report showed 100% teratoma in nodes removed! ALL CLEAR!

            Comment


            • #7
              Best of luck to you and your family. Rest assured you're going to the best TC center in the WORLD!

              Comment


              • #8
                My son is meeting w a surgeon on 09/11/17 in Cleveland for RPNLD surgery. We do not know the surgeon. The urologists that performed I/O is suggesting this surgeon. We have questions, in place to ask but feel it's not enough. Can anyone suggest what we should be asking? Suggestions to get ready for this.

                Comment


                • #9
                  ANN~ (1) How many RPLND a year have you done? Most Surgical Urologists that are NOT at a TC Center of Excellence do not have over 5 a year.
                  (2) Post Surgery Hospital Care- that is one thing I wish I had asked about, our experience was less than stellar. (3) Results of Pathlogy when to expect report
                  My son decided NOT to travel to IU after another mom of a young TC patient chimed in that her son had RPLND with the same Urolgical Surgeon that my son's Pedii Urologist referred is to in TN.
                  Wishing your son the best
                  17 year old son Grant dx 12/21/16
                  pre/o markers 12/21/16- HCG:1065.15,AFP:298.8,LDH:1119
                  pre/o CT Scan 12/22/16 normal
                  r/o 12/22/16
                  Post r/o Elevated Markers with INCREASE 4 weeks post r/o;
                  PATHLOGY: mixed maligent germ cell 8.6 x 6.2 x 5.9 cm

                  -80% Embryonal, 10% Yolk Sac, 5% Teratoma, 5% Choriocarcinoma w/LVI within Spermatic Cord and invasion into Rete Testis
                  2nd CT scan on 1/24/17 3 nodes 2 over 2.5, one over 3.5
                  BEP x 3 1/27/17
                  Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
                  2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
                  Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

                  Comment


                  • #10
                    Originally posted by jryancard View Post
                    I had RPLND surgery at Duke by Dr. Rampersaud this past February. Due to the locations and sizes of some of the tumors, the surgery was complex, from what I understood. He was very serious and focused prior to going into surgery, and he told me afterwards it was quite tense in the OR. He was able to spare the nerve, and I have had no other complications. In summary, it couldn't have gone any better. It was roughly a 6 hour surgery.

                    When we had a our baby at our local hospital a few months later in May, one of my wife's nurses who saw my file said that her son had TC. He had just had RPLND performed recently by Dr. Rampersaud as well with success. It's a small world!

                    My personal experience with Duke and my doctors was fantastic. RPLND surgery is a major one, though, so it is definitely smart to consider your options.

                    My 9/5 appt is with Rampersaud, so it's good to have such specific feedback. Would you be willing to discuss a bit more about your situation in PM?

                    Comment


                    • #11
                      Certainly, just sent you a PM.
                      9/28/16 - Diagnosed Stage 3C. 10/10/16 - Left I/O. Pathology pure seminoma but treated as non-seminoma due to aggression and high AFP at 58. Largest tumor at 11x9cm. 10/28/16 - Emergency VIP chemo in hospital and 3 additional in-patient cycles. 2/17 - RPLND and tumor masses all dead. 3/17 Remission and surveillance. 7/17 - First imaging clear.

                      Comment


                      • #12
                        I would like to discourage folks from going to private messages unless there is something so deeply personal that they do not want it made public, This forum exists to help as many folks as possible by publicly answering questions about TC so that folks that choose to just read can benefit as well as those that post. PMs only help the person(s) involved in that discussion, were as open forum posts help anyone reading them. Seems to me it's best to be open & help as many as we can every time we have something to add to a discussion.

                        Dave
                        Jan, 1975: Right I/O, followed by RPLND
                        Dec, 2009: Left I/O, followed by 3xBEP

                        Comment


                        • #13
                          I would like to discourage folks from going to private messages unless there is something so deeply personal that they do not want it made public, This forum exists to help as many folks as possible by publicly answering questions about TC so that folks that choose to just read can benefit as well as those that post. PMs only help the person(s) involved in that discussion, were as open forum posts help anyone reading them. Seems to me it's best to be open & help as many as we can every time we have something to add to a discussion.

                          Dave
                          Jan, 1975: Right I/O, followed by RPLND
                          Dec, 2009: Left I/O, followed by 3xBEP

                          Comment


                          • #14
                            Fair point on the pms. guess it's just a hold over of general forum etiquette, ie when explicitly revealing info is being discussed it should be away from the always saved public forum so as to maintain any anonimity one may wish to maintain

                            Comment


                            • #15
                              I understand that we need to respect privacy, but if everyone in this forum starts to PM then the value of this forum is lost. There are always two ways looking at it.
                              Last edited by OneBallLeft; 09-03-17, 12:21 PM.
                              6/2016 - Right I/O; 35% Yolk Sac, 35% Teratoma, 10%EC, 20% Seminoma with LVI; AFP elevated; CT scan clean
                              7/2016 - markers normal; confirmed Stage 1B; surveillance
                              8/2016 - markers normal
                              9/2016 - markers normal
                              10/2016 - markers normal; CT scan revealed 3mm lung nodule
                              12/2016 - markers normal
                              2/2017- markers normal; CT scan confirmed lung nodule grew to 14mm; confirmed relapse
                              3/2017 - 3xBEP
                              5/2017 - finished 3xBEP
                              6/2017 - markers normal; no size reduction in lung nodule
                              8/2017 - VATS and markers normal; continue to surveillance

                              Comment

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