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  • Really sorry to hear things arenít quite going to plan. The RPLND sounds like a good call with just one lymph node involved and bloods not raised when they were significantly elevated in your original diagnosis iirc. Have you got a hospital / surgeon in mind?

    You will get through this, it wonít be easy but you have already proved you can beat this once so you know you have the strength needed.

    Keep us updated and best wishes.

    Comment


    • Very very sorry to hear this. I have been following your case closely since I was more or less going through the same at the same time. But I had my RPNLD right after 3XBEP last March. If this can help, just consider that the surgery was way easier than the chemo. After two weeks I was back to work and to normal activities, I am sure it will be even better for you since your chemo is already quite distant.

      Comment


      • NISH~ Oh No!!!! Sorry about this, so if tumor markers are normal again, than you will proceed with RPNLD? I would highly suggest open for this, as in my son's case, they found far more Teratoma than was visualized on CT scans (3 post chemo). But, without pathology can't assume it is Teratoma. Keep us updated, and again sorry.
        Son Grant
        dx 12/21/16 at age 17

        BEP x3
        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


        • Bummer! RPLND sounds appropriate here. Your case is fairly similar to mine, except my post I/O ct had a larger lymph node than yours. My RPLND revealed only mature teratoma...
          6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
          6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
          7/7/15: bHCG 56, AFP 42, LDH 322
          7/13/15 - 9/18/15: 4xEP
          10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
          10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
          4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
          4/20/16: RPLND @ IU - teratoma only!
          9/27/2018 all clears up to this date!

          Comment


          • So sorry to hear that, man! Hopefully your body has recovered from chemo now and RPLND will be easier on you... Hope it goes well!!
            July 2016 - Left I/O
            December 2016 - BEPx3
            All clear for 1 year!

            My Testicular Cancer Support Kit
            First Oncologist Visit Checklist
            Simplify Cancer Podcast

            Comment


            • Hey all, thanks for the support! I am waiting 4 weeks for the RPLND, and then we'll see how it goes!
              24 year old diagnosed 6/11/16
              Pre/o markers 9/11/16 - HCG 15, AFP 210, LDH 539
              Pre/o CT Clear
              Non-seminoma (80% embryonal carcinoma, 10% yolk sac tumour, 5% chorea carcinoma, 5% seminoma)
              Post-op markers - 14/12/16 - HCG 35, AFP 1050, LDH 430
              Post-op CT with one enlarged lymph node - 1.5x1cm
              Borderline stage 2B/3B
              BEPx3 started 15/12/16 (Borderline BEPx4 - Advise of Dr. E to only do 3 rounds)
              CT and markers clear - in remission - 28/2/16

              Comment


              • Hey all,

                An update, been given a choice between robotic and open. My urologist says it's equal, and it's a bit different as he specializes in both and can start with robotic and convert to open if required.

                Anyone got any opinions? Not a fan of being given a choice, i'm leaning towards open..
                24 year old diagnosed 6/11/16
                Pre/o markers 9/11/16 - HCG 15, AFP 210, LDH 539
                Pre/o CT Clear
                Non-seminoma (80% embryonal carcinoma, 10% yolk sac tumour, 5% chorea carcinoma, 5% seminoma)
                Post-op markers - 14/12/16 - HCG 35, AFP 1050, LDH 430
                Post-op CT with one enlarged lymph node - 1.5x1cm
                Borderline stage 2B/3B
                BEPx3 started 15/12/16 (Borderline BEPx4 - Advise of Dr. E to only do 3 rounds)
                CT and markers clear - in remission - 28/2/16

                Comment


                • Nish,

                  Iím an infrequent visitor here now (I guess there are + and - points to that) but I was literally floored when I read your update. We were diagnosed around the same time but different pathology.

                  Iím sure this will sort you but Iím so sorry to read that you have to experience this. I guess in relation to your question there must be papers out there drawing a comparison but best to await feedback from those with actual experience.

                  Best wishes.
                  S.

                  Comment


                  • Originally posted by Nish115 View Post
                    Hey all,

                    An update, been given a choice between robotic and open. My urologist says it's equal, and it's a bit different as he specializes in both and can start with robotic and convert to open if required.

                    Anyone got any opinions? Not a fan of being given a choice, i'm leaning towards open..
                    Everything I've read says open is better at making sure they get everything, but robotic has easier recovery. I can't recall anyone posting that they had a relapse after robotic, but the experts seem to not favor it. Personally, I think I'd go for open, but that's me.

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

                    Comment


                    • Some Urologists prefer robotic. For Grant it was not an option. I do know that with Grant additional Teratoma was discovered during his open RPLND that was not visualized on any CT Scans.Wishing you the best as you decide.
                      Son Grant
                      dx 12/21/16 at age 17

                      BEP x3
                      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


                      • Hey sorry all, couldn't find my password and the reset was broken for a while!

                        Just an update, I chose to do a robotic surgery in the end, as that was recommended by my surgeon.

                        I had it a couple Fridays ago (23rd March). It went really well, they made 5 cuts in my lower stomach, my surgeon said that it went better than doing it openly and no complications (no ejaculation nerves cut etc).

                        They actually sent me home the next day which was very surprising. I am now about 10 days out, and I am moving around pretty easily. Still some pain when sleeping (if I sleep on one side a lot), or if I move quite a bit, but I think because I started moving around the next day it's helped strengthen me.

                        Only time will tell if robotic was the right path to go down, but in terms of pain, i'd actually say it was on par with the orchiectomy, maybe slightly worse. I think it will take a bit longer to return to fitness than before though, as for example my stomach is still swollen.

                        Get my pathology results in about a month from now, so fingers crossed..
                        24 year old diagnosed 6/11/16
                        Pre/o markers 9/11/16 - HCG 15, AFP 210, LDH 539
                        Pre/o CT Clear
                        Non-seminoma (80% embryonal carcinoma, 10% yolk sac tumour, 5% chorea carcinoma, 5% seminoma)
                        Post-op markers - 14/12/16 - HCG 35, AFP 1050, LDH 430
                        Post-op CT with one enlarged lymph node - 1.5x1cm
                        Borderline stage 2B/3B
                        BEPx3 started 15/12/16 (Borderline BEPx4 - Advise of Dr. E to only do 3 rounds)
                        CT and markers clear - in remission - 28/2/16

                        Comment


                        • Good to hear the op went well, Nish, and you are recovering as well as you can expect!!
                          July 2016 - Left I/O
                          December 2016 - BEPx3
                          All clear for 1 year!

                          My Testicular Cancer Support Kit
                          First Oncologist Visit Checklist
                          Simplify Cancer Podcast

                          Comment


                          • I would say full open RPLND recovery is 10x worse than orchie recovery, so your path definitely has an easier recovery!
                            6/5/15: bHCG 27,AFP 8.66, LDH 361, 5.6cm lymph node - Stage IIC
                            6/16/15: Left I/O 85% EC, 10% chorio, 5% yolk sac opinion 2 (mayo) 90% EC, 10% yolk sac
                            7/7/15: bHCG 56, AFP 42, LDH 322
                            7/13/15 - 9/18/15: 4xEP
                            10/1/15: bloodwork normal, ct scan shows 2 lymph nodes 1.0cm
                            10/26/15: 2nd opinion on CT results - lymph nodes normal. Surveillance!
                            4/6/16: 1.7cm X 1.5cm lymph node found with markers normal.
                            4/20/16: RPLND @ IU - teratoma only!
                            9/27/2018 all clears up to this date!

                            Comment


                            • A month seems a bit long for the path report?
                              Jan, 1975: Right I/O, followed by RPLND
                              Dec, 2009: Left I/O, followed by 3xBEP

                              Comment


                              • The whole process was quite long to be honest, my actual operation was about 2 months after they found the cell in my stomach, which felt very long but they said they weren't worried about waiting. And now it'll take about a month for path results. I imagine they'll have the results about 2 weeks after, so if it is something serious they might bring it forward, but they were quite confident that it was teratoma as my markers were low so that might be why they've said it'll be 4-6 weeks?
                                24 year old diagnosed 6/11/16
                                Pre/o markers 9/11/16 - HCG 15, AFP 210, LDH 539
                                Pre/o CT Clear
                                Non-seminoma (80% embryonal carcinoma, 10% yolk sac tumour, 5% chorea carcinoma, 5% seminoma)
                                Post-op markers - 14/12/16 - HCG 35, AFP 1050, LDH 430
                                Post-op CT with one enlarged lymph node - 1.5x1cm
                                Borderline stage 2B/3B
                                BEPx3 started 15/12/16 (Borderline BEPx4 - Advise of Dr. E to only do 3 rounds)
                                CT and markers clear - in remission - 28/2/16

                                Comment

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