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If you had 3xBEP, than needed RPNLD when was your first scan post surgery?

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  • If you had 3xBEP, than needed RPNLD when was your first scan post surgery?

    My son Grant goes to the Pedi Oncologist on Thursday, June 29th. I believe he will have tumor markers done, but need some input on when to schedule follow-up CT Scan Post RPNLD (May 8th). I have received 2 different opinions- one doctor says 4 months (IU), another says 6 months. Grant's post chemo CT Scans still showed several enlarged nodes post chemo which led to RPNLD (Teratoma).

    Thanks in advance.
    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.

  • #2
    Hope both Grant and you are well. I cannot answer your question, but 4 months sounds like a safer option if you have a choice...

    Comment


    • #3
      Hope Grant is feeling better now. My husband had RPLND surgery on 07/01/2016 in Mayo clinic. They did follow-up CT scan and other blood marker tests on 10/04/2016, almost after 3 months.

      Comment


      • #4
        JOESMUM~ How is Joe? How are you? Grant is wonderful.

        PRIYANKA~ Thank you. Hope your husband is doing well.
        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


        • #5
          In my case it was 4 months after RPNLD, although instead of CT scan I had MRI to the abdomen and low-dose CT scan to the lungs.

          Comment


          • #6
            SINGA~ thanks. Seems as though they want 6 months post RPNLD for CT scan. Also, they did not draw any markers yesterday except LDH. And if Grant waits until end of September for next labs it will be 5 months since his last blood work for tumor markers. I know that is not "normal" post 3xBEP and post chemo RPNLD for the first year.
            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


            • #7
              I would not be concerned about the 6 month scan. They opened him up, poked & prodded & removed anything they found that looked at all abnormal. That is WAY better than any ct scan can reveal. CT scans are tools that help avoid surgeries, but ultimately, the surgery tells the story much better.

              Dave
              Last edited by Davepet; 07-02-17, 12:41 AM.
              Jan, 1975: Right I/O, followed by RPLND
              Dec, 2009: Left I/O, followed by 3xBEP

              Comment


              • #8
                Thanks Dave. I will call tomorrow about Grant's HCG (they do not put that on the patient portal since it is a Children's Hospital), but his other tumor markers are normal!!! So blood work again at end of September & CTScan/ lung X-ray in November.

                UPDATE: All of Grant's Tumor Markers from 6/29/17 are normal so 1st ALL CLEAR!!!
                Last edited by Trekga; 07-05-17, 11:02 AM.
                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


                • #9

                  UPDATE: All of Grant's Tumor Markers from 6/29/17 are normal so 1st ALL CLEAR!!
                  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
                    Grant with his Pedi Oncologist Dr. Susan Spiller at his "off treatment" party.
                    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


                    • #11
                      Grant goes for his 1st post chemo RPLND ct scan on Wednesday 11/15. I know IU/Dr.E suggest 4 months post surgery, but new NCCN Guidelines say 6 months, so that is what we went chose.
                      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


                      • #12
                        My first scan post all clear is also this week. Praying for good results for both Grant and I!
                        3/29/17 Diagnosed 100% Embryonal 4/10/17 Left I/O CT scan shows a few suspicious lymph (biggest 1.9 cm) 5/8/17 - 7/3/17 3xBEP 7/20/17 CT Scan Clear, AFP has uptick to 19 8/16/17 AFP Drops in half to 10, ALL CLEAR! 11/16/17 All Clear! AFP continues to drop!

                        Comment


                        • #13
                          dcalandrelli~ Wishing you the best results. Update when you get them.
                          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


                          • #14
                            Praying for you two this week.

                            Comment


                            • #15
                              Praying for you two this week, and wishing for the best results.

                              Comment

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