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  • #16
    So the CT scan only showed 2 nodes back in April but now there were 10 with EC?, I would definitely get Doc E to weigh in here. Since you had a robotic surgery, it's more likely that some node got missed. I'll be surprised if he does recommend 3xBEP.

    Dave
    Last edited by Davepet; 05-16-19, 06:45 PM.
    Jan, 1975: Right I/O, followed by RPLND
    Dec, 2009: Left I/O, followed by 3xBEP

    Comment


    • #17
      Hi Balance, Dr Pierorazio is a class act. Know him personally.

      It's a tough call on what to do next. Dr P is a great guy. You can just go with whatever he thinks you should do. Personally, I'd probably do the 2xEP chemotherapy with 10 nodes being "hot" with EC, rather than 3 or 4 rounds later. I'm not sure what the odds are of you being cured already with your case and with the robotic procedure. Like he said, there's not a lot of data for patients that have done the primary -robotic- RPLND for Stage II NSGCT, as typically this has been managed by primary chemotherapy, or a full-open procedure. Either way, Dr P is an amazing doctor and human being, and you're in great hands. Best of luck.
      Young Adult Cancer Survivorship by Steve Pake
      April is Testicular Cancer Awareness Month!
      www.stevepake.com
      Feb 2011, Stage IIB, 4xEP, RPLND, PTSD
      My Survivorship Thread | All of my Blogs
      C
      ONTACT ME ANYTIME!

      Comment


      • #18
        Dave, I actually got a CT scan a week before surgery and it had 3 enlarged lymph nodes. He also said he took everything he saw.

        SP, yes Dr P is great. He gave me his cell phone to call any time. His name is all over TC research and I’m very comfortable under his care. He explained that I’m still N1 since all my nodes were less than 2cm. Only three were enlarged, and the other 19 he took were between 1-2mm. Cure with Primary RPLND for my stage cancer according to him is 90%(N1). But since I had 10 nodes with EC in it, he thinks I’m probably less than 90%. He stated you are definitely not N2, which cure rate with primary RPLnD would be 50%. So essentially since there is little data, he said you are somewhere between 50-90% cured with RPLND alone. His suggestion was that since chemo reacts well against EC, to wait and see the next CT scan and blood work. Since I have to wait 4 weeks first to recover from surgery anyways, what’s a couple more weeks to check the CT/blood. He said the risks and differences between 2 cycle vs 3 cycle chemo is not much different, but the diff between no chemo and 2 cycles is significant. He said either way, he is confident if the EC is still there, then we would easily cure me either way we went.

        I’m still waiting for my pathology report to post to MyChart before making my decisions. I was the same initially though, that I just wanted to blast it now.

        You guys are awesome and I appreciate your inputs!
        Last edited by Balance; 05-16-19, 02:50 PM.

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        • #19
          So as I was reading I was leaning towards 2xEP to ensure you knock it out.

          But honestly, generally the point of doing the primary RPLND in the first place is to avoid chemo. And you still have a better than 50/50 shot at avoiding chemo entirely if you stick to surveillance. So given this I would lean toward surveillance at this point and save chemo for if it is determined you clinically require it. It definitely would be nice to get out the other end never having chemo.
          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


          • #20
            Originally posted by Balance View Post
            He said the risks and differences between 2 cycle vs 3 cycle chemo is not much different, but the diff between no chemo and 2 cycles is significant. He said either way, he is confident if the EC is still there, then we would easily cure me either way we went.
            Well, the difference is that you could do 2xEP now, versus 3xBEP (or 4xEP) later, which is a pretty big difference. I don't think there's enough data out there to know definitively about cumulative rates of morbidity between no chemo versus a lighter weight 2xEP protocol, and 3xBEP/4xEP, for example, and it will probably vary quite a bit from patient to patient also. I'll just say that that 4th round of EP really killed me, and that's when my left kidney started packing up on me. I'm skeptical and "not so sure", but Dr P would know best about what the latest studies are saying.

            When you see him again, tell him Steve Pake says hi.
            Young Adult Cancer Survivorship by Steve Pake
            April is Testicular Cancer Awareness Month!
            www.stevepake.com
            Feb 2011, Stage IIB, 4xEP, RPLND, PTSD
            My Survivorship Thread | All of my Blogs
            C
            ONTACT ME ANYTIME!

            Comment


            • #21
              Agree on the last round of EP! If I did it over again I would do 3xBEP instead of 4xEP.
              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


              • #22
                I would go with the chemo.

                That seems like it was a lot of nodes and an aggressive cancer. I wouldn't want to take my chances and would hit it hard now while you have the opportunity.

                - Matt
                March 4th 2014: [AFP = 2.5; bHCG = 6; LDH = 618]
                March 13th: Left IO 100% Classic Seminoma
                6.3 x 5.1 x 3.8 cm, no invasion of anything
                LDH never fully normalized
                Stage: IS
                Watchful Waiting
                May 1st: promoted to Stage IIB with two PET active tumors in the para-aortic lymph nodes 2.5 & 2.4 cm
                May 12th: started 3xBEP
                Neupogen during Cycle 2 and 3
                July 8th: Last Bleo shot of Cycle 3 -- chemo completed !
                August 4th: Post Chemo CT/PET scan
                September 4th: Port removed
                Jan 9th 2019: 4.5 YEARS ALL CLEAR !

                Comment


                • #23
                  Dr. pierorazio and dr. Einhorn both prefer observation over chemo for the same biwi stayed above. Lots to discuss with family. I have a little time before I have to make the decision. Probably do some of my own research as well. Thanks again for all your comments and support.

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