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  • RPLND at Johns Hopkins

    So had a right testicle orchiectomy with YK, teratoma, seminoma, and EC. So NSGCT. AFP tumor markers went as followed, 855.5, 19.2, 4.5, 4.7, 5.0, 5.4. So they are creeping back up. CT scan showed an interval enlargement of 2 nodes. My oncologist and urologist want me to have RPLND. Sent my records and images to IU and Dr Einhorn and Dr Cary both weighed in echoing the same thing. Dr Cary said nodes are 1.8cm. Unfortunately, Tricare reserve select does not cover them and seems to be a up hill battle. Reached out to Dr. Pierorazio at Johns Hopkins, he is in Tricares network so he would be covered. My research has shown he is an expert in the field and does high volume RA-RPLNDs. Has anyone had their RPLND with him? IF so can you expand on your experience post RPLND? Thanks Ben

  • #2
    Far be it for me to go against Einhorn here, but I would not recommend you do an RPLND. That is usually only reserved when there is no elevated markers. In your case, the RPLND is unlikely to be curative, and would not only be a potential waste of time, but if chemo will indeed be necessary later, you’ll end having to go into chemo with a body that is still recovering from the effects of the surgery. You need a systemic treatment, and that will likely be 3x BEP.
    2018:
    1/10 - Felt mass in right testicle.
    1/11 - LDH: 287 (max = 246), AFP: 16, HCG: 87
    1/18 - Orcheictomy. Non-sem, 80% EC, 15% Teratoma, 5% Yolk. LVI present. pT2, Tentative stage 1B.
    1/29 - Chest CT, Brain MRI, all clear
    2/19: HCG = 5.6, AFP = 13, LDH = 187 (ref = 340)
    2/20: Abdomen CT, 3 large lymph nodes, 0.8, 1.0 and 1.3. Stage 2A
    2/22: 3x BEP start
    2/22 - 4/26:
    AFP: 13, {11, 9, 5}, {4, 4, 3}, {3, 2, 2}
    HCG: 5.6, {2.7, <0.6, <0.6}, {<0.6, <0.6, <0.6}, {<0.6, <0.6, <0.6}
    LDH: 187, {208, 149, 196}, {215, 197, 222}, {277, 270, 240}
    5/3: CT scan, all clear. Lymph nodes <1cm (largest 0.8cm)
    7/5: Repeat MRI, lymph nodes unchanged. Markers still normal
    9/1: Repeat MRI, unchanged

    Comment


    • #3
      Well my markers arent elevated. They are increasing but still in the normal range. So I think thats why both Einhorn and Cary agree to have an RPLND.

      Comment


      • #4
        AFP below 20 is not cause for concern, but nodes greater than 1CM are. I would personally prefer chemo with enlarged nodes & non seminoma, since some non seminoma can spread via blood & is not detectable in the lymph system. RPLND is somewhat less effective than chemo in those cases. Tough call, I'm afraid.

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

        Comment


        • #5
          indeed be necessary later, you’ll end having to go into chemo with a body that is still recovering from the effects of the surgery. You need a systemic treatment, and that will likely be 3x BEP.[/QUOTE]

          But his markers are normal. I generally agree with the chemo sentiment, but there is teratoma in the testicular specimen. If any of the enlarged nodes have teratoma then chemo will be ineffective and he’d end up with both. This is a really tough call given the teratoma component.

          Wonder if a biopsy of the nodes would help clarify?

          Comment


          • #6
            The percent of teratoma has not been specified, so impossible to know how significant that might be. however teratoma is NOT a cancer. Even though it can cause problems or even transform to a TC down the road. Difficult to know what to do in a case like this. If it were me, unless the teratoma component was very large & everything else very low, I think I'd want chemo to kill anything anywhere & RPLND if anything remained. JMHO.
            Jan, 1975: Right I/O, followed by RPLND
            Dec, 2009: Left I/O, followed by 3xBEP

            Comment


            • #7
              I have a very similar case history to you Balance - I too had YK, T and EC (minus seminoma), my AFP dropped to 4, before it started ticking back up to 13, and had 3 enlarged nodes on CT. Granted I had elevated HCG as well that helped with a more definitive diagnosis, but I think in your case, it’s best to wait and see if there’s a positive trend to your AFP. Within a couple of weeks, you should have your answer I think.
              2018:
              1/10 - Felt mass in right testicle.
              1/11 - LDH: 287 (max = 246), AFP: 16, HCG: 87
              1/18 - Orcheictomy. Non-sem, 80% EC, 15% Teratoma, 5% Yolk. LVI present. pT2, Tentative stage 1B.
              1/29 - Chest CT, Brain MRI, all clear
              2/19: HCG = 5.6, AFP = 13, LDH = 187 (ref = 340)
              2/20: Abdomen CT, 3 large lymph nodes, 0.8, 1.0 and 1.3. Stage 2A
              2/22: 3x BEP start
              2/22 - 4/26:
              AFP: 13, {11, 9, 5}, {4, 4, 3}, {3, 2, 2}
              HCG: 5.6, {2.7, <0.6, <0.6}, {<0.6, <0.6, <0.6}, {<0.6, <0.6, <0.6}
              LDH: 187, {208, 149, 196}, {215, 197, 222}, {277, 270, 240}
              5/3: CT scan, all clear. Lymph nodes <1cm (largest 0.8cm)
              7/5: Repeat MRI, lymph nodes unchanged. Markers still normal
              9/1: Repeat MRI, unchanged

              Comment


              • #8
                Originally posted by Davepet View Post
                The percent of teratoma has not been specified, so impossible to know how significant that might be. however teratoma is NOT a cancer. Even though it can cause problems or even transform to a TC down the road. Difficult to know what to do in a case like this. If it were me, unless the teratoma component was very large & everything else very low, I think I'd want chemo to kill anything anywhere & RPLND if anything remained. JMHO.
                Personally I’d push for a biopsy to see if there’s any teratoma present. While it’s not a cancer it can still be very bad if it surrounds or adheres to the aorta or vena cava. That turns a future RPLND into a major vascular surgery as well. Very tough call.

                Comment


                • #9
                  RPLND can be curative for stage 2 non-seminoma if the nodes are small enough and it is not advanced enough. But time would be of the essence. I would not have an issue having an RPLND to potentially avoid chemotherapy altogether. RPLND generally has less long term health effects than 3xBEP/4xEP.

                  EDIT: RPLND here in this situation seems to actually be preferred to chemo if you read the 2018 NCCN guidelines for testicular cancer. Note Stage 2a, markers NOT elevated.
                  Last edited by biwi; 04-18-19, 01:59 PM.
                  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: begin 4xEP, end 9/18/15
                  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!
                  4/15/19: all clears up to this date!

                  Comment


                  • #10
                    So YK is 50%, teratoma is 30%, semin 15% EC was 5%. My last CT showed a 1.8cm node. one adjacent to the distal abdominal aorta and another adjacent to the proximal RIGHT common iliac artery. the one adjacent tot he aorta is appears centrally necrotic.

                    its really hard for me to go against what all the doctors are saying. Even the MAYO clinic weighed in and basically said all 3 options were still god options. but otherwise everyone else says RPLND.

                    I have a CT and tumor markers scheduled for next week. I think that will be very telling. The surgery at JHU is scheduled for May 8. I imagine if something is different from these scans then we may change.

                    I appreciate all the inputs and dialog. it helps when dealing with this for sure!

                    Comment


                    • #11
                      Update.

                      Currently sitting in The Johns Hopkins hospital. Wednesday morning Dr. Pierorazio performed a Single-port robotic assisted RPLnD. I could have left the hospital today(Thursday), but we weren’t planning to fly back to Atlanta until Sunday, so I opted to stay in the hospital one more night for good measure.
                      There is one 2 inch incision for the single port robotic device just below my belly button and one incision for an assistant on my right side. I never heard of this kind, I only read about the 5 incisions from the DaVinci device. He said this is even newer.

                      He removed three nodes, the largest being 1.8cm. All three nodes were intertwined with one of the nerves. So he could only spare two out of the three ejaculation nerves, so time will tell with that. I didn’t really care either way. He said everything else went great and checked both the left and right side.

                      I currently have a very swollen scrotum, but nothing that surprised him...just elevation and ice would help that out. Kind of hard to completely elevate your scrotum.

                      Depending on what the pathology report says will determine what we do next.

                      I’ve already when walking laps in the hospital. They have me on full clear diet with no more than 10g of fat. So chicken broth, FL yogurt, Italian ice and apple juice work well.

                      I can’t say enough of great things about Dr. Pierorazio and all the staff here at Johns Hopkins.

                      I will update when I get my pathology report.

                      Comment


                      • #12
                        Well Dr. Pierorazio called today. He has the results of my pathology report. He removed 22 lymph nodes. 3 of them were greater than 1 cm but less than 2. All the others were 1-2 mm. Out of the 22, 10 had cancer in them. He said he doesn’t have a lot of study on individuals like me. And we have 2 options. We can hit it with 2 cycles of chemo 4 weeks post-RPLND for good measure and kill anything left. Or wait, get a CT at the 6 -8 week mark and see if there is any cancer from there. If so, then hit it with 3 cycles of chemo.

                        So I guess I have a decision to make. Have any of you seen anything similar? Any advice? I was so caught up in the moment, I forgot to ask what cancer he saw.

                        Comment


                        • #13
                          Just found out they are all Embryonal.

                          Comment


                          • #14
                            Hi Balance,

                            Sorry to hear this unpleasant news. Since there are 10 from 22 lymph nodes are EC, I would take chemotherapy as early as possible. EC has good response to BEP. I would not give any chance to EC. I am not sure 2 round of BEP is enough. Do you have advice from Dr. Einhorn?

                            Best wishes to you.

                            Amy, Ran’s mom
                            Son Ran, 24 years old, 25th May 2018 diagnosed NSGCT. 28th May 2018 right orchiectomy. Pathology:50% EC, 30% Teratoma,20% Yolk sac. CTs: 1 retroperitoneal lymph node 0.7mm Tumor markers: AFP 497, bhcg 19, LDH normal Normalized after R/O. Stage 1, surveillance 17th September 2018, Bhcg elevated up to 5.6 AFP and LDH normal, CT stable. 4th November bhcg up to 28, AFP and LDH normal. BEPx3 started and 2nd January 2019 BEP finished with Tumor markers normalized. 13th February 2019 CT scan showed 1 retroperitoneal lymph node enlarged up to 1.1 cm with normal tumor markers. RPLND : 03/14 2019@IU Dr.Cary Pathology report: one lymph node from 57 is Teretoma .Back to surveillance 05/02/19 Blood work all normal

                            08/23/2019 Bloodwork, Abdomen CT and Chest X-ray all normal

                            Comment


                            • #15
                              That’s what I was thinking. I haven’t email Dr. Einhorn because I’m waiting to see the actual pathology report once it’s posted to my chart. So then I can give him the actual verbiage. Tomorrow will be 1 week since my Ra-RPLND so I still have to recover a little from the surgery before beginning chemo. Once I get the actual pathology I will email him and see what he thinks. I appreciate ur response it kinda goes with what I was feeling.

                              Comment

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