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RPLND at Johns Hopkins

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  • Balance
    started a topic RPLND at Johns Hopkins

    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

  • Balance
    replied
    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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  • JeskiM69
    replied
    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

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

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  • S P
    replied
    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.

    Leave a comment:


  • biwi
    replied
    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.

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  • Balance
    replied
    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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  • S P
    replied
    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.

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  • Davepet
    replied
    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.

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  • Balance
    replied
    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.

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  • Ryan Bi
    replied
    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

    Leave a comment:


  • Balance
    replied
    Just found out they are all Embryonal.

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  • Balance
    replied
    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.

    Leave a comment:


  • Balance
    replied
    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.

    Leave a comment:


  • Balance
    replied
    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!

    Leave a comment:

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