Joining the RPLND club

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  • MikeyG41
    Registered User
    • Jan 2010
    • 57
    #1

    Joining the RPLND club

    Met with my oncologist today and was hoping for an all clear, but wasn't too confident. Finished 4xBEP on 4/26 and had a CT scan two days ago. Just got results today. My tumor markers are normal, so there's no active cancer, but I still have enlarged lymph nodes of 4.7cm and 2.8cm, as well as a few more ranging up to 1.8cm.

    I had 20% teratoma in my original pathology, so doc says it could be some scar tissue, but likely teratoma, which should be removed. He recommends the RPLND, and I will be meeting with a Urologic oncologist at UVA in Charlottesville, VA next week. My doc worked with her before and says she has experience with the RPLND. I'll definitely be getting more info from her next week. He also mentioned there is a doctor there with experience doing the L-RPLND.

    I've read probably all the threads on here, so I have an idea of what to expect and have read all the tips given. So, first of all, thanks to everyone for all the great info.

    Was wondering if anyone has been treated at UVA before, or if they know of any of the doctors there? Also, I'd like to see if the L-RPLND is an option. Is there a certain "criteria" for getting an L-RPLND vs the regular RPLND? Is it just up to the doctor, or if there is a doctor available that has done it before, or does it depend on the size/location of lymph nodes?

    Thanks for any answers you can give. Wasn't hoping or expecting to have to be here asking these things. But it's good to have a place to do so.

    Mike
    12/30/09-diagnosed, 5cm mass on right, 5mm nodule on left, abdomenal lymph
    nodes of 3cm and 4cm
    1/14/10-Right I/O, removed nodule and 1/3 of left testicle
    1/21/10-Path back: 60% yolk sac, 20% teratoma, 15% EC, 5% chorio.
    L/V invasion - Present
    2/8/10- 4/26/10 Chemo 4xBEP, blood clot in lungs, port removed, 2 PICC lines after 1st one leaked
    5/21/10 - CT shows lymph nodes 4.7 & 2.8cm, but no active cancer
    6/23/10 - RPLND w/ Dr Sheinfeld @MSKCC
    6/8/13 - Still cancer free!
    Tags: None
  • Aegean
    Administrator
    • Nov 2008
    • 3163
    #2
    Mike,

    It's good that the bloods were clean. I'm sorry you now have to go through an RPLND. For what it's worth, if it were me, I too would explore the crap out of going laproscopic. Unfortunately an L-RPLND may not be as effective as a fully open one as they may not get as many lymph nodes. What it really comes down to is that you only want to have the surgery done once and be done with it. Plus, depending on your organs, L-RPLND may not be an option.

    I know you have already read this, please make sure you get someone very experienced. Doing one a month is better than non, but does not compare with someone that does at least one a week or more. This is tough surgery, not so much because it is life threatening, but more so because you want to make sure it is truly nerve sparing and that they get as many of the lymphs as possible.

    Good luck and keep us in the loop.
    Best,

    Zsolt


    Friendship is born at that moment when one person says to another; "What! You too? I thought I was the only one." - C.S Lewis

    “Experience: that most brutal of teachers. But you learn, my God do you learn.” - C.S. Lewis


    Mass found 11/20/08
    Left I/O 11/25/08
    Pathology: Seminoma, Stage 1
    Surveillance: All Clear since

    Comment

    • Already Bald
      Registered User
      • Nov 2006
      • 2042
      #3
      Post chemo RPLND's are especially tricky, and really need to be done by an experienced expert. Dr. Sheinfeld at MSKCC told me chemo "thickens" the area, and makes the nodes real "sticky".
      Charlottesville is a beautiful area, I just visited Monticello on Spring Break. Even so, I would suggest you seek a second urological opinion on the surgery, at a center of excellance.
      You should bank sperm if you want future children, and I would doubt L-RPLND will be an option for you.
      Best,
      Joe
      Stage III. Embryonal Carcinoma, Mature Teratoma, Choriocarcinoma.
      Diagnosed 4/19/06, Right I/O 4/21/06, RPLND 6/21/06, 4xEP, All Clear 1/29/07, RPLND Incisional Hernia Surgery 11/24/08, Hydrocelectomy and Vasectomy 11/23/09.

      Please see a physician for medical advice!

      My 2013 LiveSTRONG Site
      The 2013 Already Balders

      Comment

      • MikeyG41
        Registered User
        • Jan 2010
        • 57
        #4
        During the surgery, do they just grab as many lymph nodes as possible, or just the ones that are larger than normal? Also, as far as the L-RPLND, I don't really understand why it may not be an option. Is it because the organs may be too hard to get around, or does it have to do with it being post-chemo?

        I appreciate the help in understanding this. When I meet with the doc next week, if I don't like what I hear, I think MSKCC will be the next stop, as it's "only" about 5+ hours away.

        Mike
        12/30/09-diagnosed, 5cm mass on right, 5mm nodule on left, abdomenal lymph
        nodes of 3cm and 4cm
        1/14/10-Right I/O, removed nodule and 1/3 of left testicle
        1/21/10-Path back: 60% yolk sac, 20% teratoma, 15% EC, 5% chorio.
        L/V invasion - Present
        2/8/10- 4/26/10 Chemo 4xBEP, blood clot in lungs, port removed, 2 PICC lines after 1st one leaked
        5/21/10 - CT shows lymph nodes 4.7 & 2.8cm, but no active cancer
        6/23/10 - RPLND w/ Dr Sheinfeld @MSKCC
        6/8/13 - Still cancer free!

        Comment

        • andoryuu
          Registered User
          • May 2010
          • 42
          #5
          I'm scheduled to have my L-RPLND on Wednesday with Dr. Daniel Eun in Philadelphia. He was trained by Dr. Mani Menon in Detroit who is one of the pioneers of Robotic Urology. Dr. Eun said that he would not do an L-RPLND post chemo because of what Already Bald said. My Dr. said it was like someone sprayed super glue in your RP after chemo.

          PC-RPLND is hard based on what I've read and heard, but if you have someone who had experience, not just in RPLND, but PC-RPLND you'll be fine. However, with PC-RPLND your retro ejac chance is way higher on PC-RPLND so if you can bank, do so. There are assistance programs out there you may qualify for that you can search the site for (I'm sorry--I don't remember them off the top of my head).
          Andoryuu
          3/30/10: Symptoms: Pain!
          4/5/10: Ultrasound: two masses
          4/20/10: I/O right (2.5 Seminoma / 2.4 NS (50%EC, 50%Chorio)) LVI positive
          5/26/10: Robotic (Da-Vinci) RPLND

          Comment

          • Scott
            Administrator
            • Jul 2003
            • 7842
            #6
            Originally posted by andoryuu View Post
            ...so if you can bank, do so. There are assistance programs out there you may qualify for...
            LIVESTRONG's Fertile Hope initiative is the one I know.

            Livestrong Fertility Program
            http://www.fertilehope.org/
            Livestrong Fertility is dedicated to providing reproductive information, resources and financial support to survivors whose cancer and its treatment present risks to their fertility.
            Scott
            right inguinal orchiectomy 6/5/2003 > nonseminoma, stage I > surveillance > L-RPLND 6/24/2005 for recurrence, suspected teratoma but found seminoma, stage II > chylous ascites until 9/2005 > surveillance and "all clear" since

            Your donation funds Livestrong services for people facing cancer now. Please sponsor my ride!

            Comment

            • MAFFAS
              Registered User
              • May 2010
              • 49
              #7
              Does the fact that my primary tumor consisted of 95%+ ec make it less likely that there will be residual mass post 3xBEP or is this not a factor?

              Comment

              • Itsadeepbluesea
                Registered User
                • Dec 2008
                • 649
                #8
                When they go in the take a bunch of lymph nodes not just the ones that are enlarged, they take as many as possible just in case it is in others and not just showing. I think they told me for mine they took 2-3 dozen or something like that. If you have any questions feel free to PM me and I can share my personal story with you.
                Diagnosed Sept 26th 2008 Both AFP and HGC slightly elevated 1.1cm Lump found right testicle with small satellite lesions, CT scan negative.
                Right Radical Orcidectomy Oct 2nd 2008
                Markers Normalized 1 Week Post Surgery on to surveillance
                End of Nov AFP rose to 44.5, CT scan Negative
                3xBEP Dec-Feb
                March-APF normalized on to surveillance again
                May 6th-CT 4.5cm tumor in abdomen, tumor markers normal.
                RPLND May 26th 2009 found teratoma
                On to surveillance
                All Clear as of Sept 2011

                Comment

                • MikeyG41
                  Registered User
                  • Jan 2010
                  • 57
                  #9
                  I met with the man, the legend...

                  Well, I must say that I agree with everyone that MSKCC and Dr. Sheinfeld are great!

                  Talked to the oncologist at UVA on Monday and she couldn't see me til June 7. Didn't want to wait that long, so I called MSKCC to see when i could see Dr. Sheinfeld. They scheduled me for Thursday at 10am. My doc faxed my reports up to them, I got my CT scan CD and we had the lab Fedex my pathology slides. Drove to NYC on Wednesday...wow city life is different!

                  Got to appointment 1.5 hours early, but they registered us and took me back by 9am. Met with Dr. Sheinfeld (who was great). He examined me, explained the RPLND procedure, prep, recovery and possible side effects. I am scheduled for surgery on June 23rd. Met with a few of his staff and decided to do the pre-surgical testing that day. Was scheduled immediately for blood tests, EKG, chest x-ray, and PFT. Got all that done and was on the road by 4pm. Everyone at MSKCC was great.

                  One surprise was they said after an approx. 5-7 day hospital stay, we have to stay in town for another week. Just in case of any complications, they want me nearby. Was wondering if this is normal? We are working with the social worker to arrange a stay at the Hope Lodge.

                  Anyway, can't say I'm looking forward to surgery, but I'm looking forward to getting this cancer crap in the past.


                  Mike
                  12/30/09-diagnosed, 5cm mass on right, 5mm nodule on left, abdomenal lymph
                  nodes of 3cm and 4cm
                  1/14/10-Right I/O, removed nodule and 1/3 of left testicle
                  1/21/10-Path back: 60% yolk sac, 20% teratoma, 15% EC, 5% chorio.
                  L/V invasion - Present
                  2/8/10- 4/26/10 Chemo 4xBEP, blood clot in lungs, port removed, 2 PICC lines after 1st one leaked
                  5/21/10 - CT shows lymph nodes 4.7 & 2.8cm, but no active cancer
                  6/23/10 - RPLND w/ Dr Sheinfeld @MSKCC
                  6/8/13 - Still cancer free!

                  Comment

                  • mahalomom
                    Registered User
                    • Jul 2008
                    • 1176
                    #10
                    Mike,

                    I'm so glad you decided to go to a Center of TC Excellence. You should feel very confident.

                    I'll be thinking of you on the 24th.

                    Mary Ann
                    CaregiverSon Josh 23yr Dx 3/5/08 IIIC NonSeminoma affected lung, kidney liver back & tumor/clots in vena cava & celiac artery 3/7/08 L I/O 3/30/08 PostOp surgery 4XEP (VP16 & Cisplatin) 3/12-5/25 LDH > 5000 & AFP 145 (3/5 pre-op) LDH 563 & AFP 4 (5/26 after 4Xchemo) off blood thinners 3/18/09 Surveillance per Dr E 8/4/08 *1/2012 ALL CLEAR!

                    Self 1/29/09 dx thyroid cancer metastasized to right lung 2/10 thyroid removd 4/17 rx RA131 5/11/10 &7/16/10. 1/12survellience

                    Comment

                    • MikeyG41
                      Registered User
                      • Jan 2010
                      • 57
                      #11
                      It's the big day! Up at 4am to beat the Manhattan traffic and get to MSKCC by 6am. I'm sure me and the pain pump will be good friends by the end of the day. I'll post an update when I can.

                      Mike
                      12/30/09-diagnosed, 5cm mass on right, 5mm nodule on left, abdomenal lymph
                      nodes of 3cm and 4cm
                      1/14/10-Right I/O, removed nodule and 1/3 of left testicle
                      1/21/10-Path back: 60% yolk sac, 20% teratoma, 15% EC, 5% chorio.
                      L/V invasion - Present
                      2/8/10- 4/26/10 Chemo 4xBEP, blood clot in lungs, port removed, 2 PICC lines after 1st one leaked
                      5/21/10 - CT shows lymph nodes 4.7 & 2.8cm, but no active cancer
                      6/23/10 - RPLND w/ Dr Sheinfeld @MSKCC
                      6/8/13 - Still cancer free!

                      Comment

                      • dadmo
                        Registered User
                        • Oct 2004
                        • 6284
                        #12
                        Good luck today Mike. You'll be fine.
                        Son Jason diagnosed 4/30/04, stage III. Right I/O 4/30/04. Graduated College 5/13/04. 4XEP 6/7/04 - 8/13/04. Full open RPLND 10/13/04. All Clear since.

                        Treated by Dr. Rakowski of Midland Park, NJ. Visited Sloan Kettering for protocol advice. RPLND done at Sloan Kettering.

                        Comment

                        • val
                          Registered User
                          • Feb 2010
                          • 625
                          #13
                          Hi Mike,

                          Best of luck, hopefully when you read this it will be all behind you and you will be on full road to recovery.

                          Val
                          Val Brother (23 when diagnosed) : Dianosed 14/09/2009, testicle removed, Non sem diagnosed. Tumour markers 36000 before op and dropped to 17000 after operation.. Chemo started end of september 4 x BEP. Tumour markers normal at end of chemo. RPLND 26 Feb 2010 No cancer found. Latest Appointment November 2013- CT and markers normal http://www.tc-cancer.com/forum/core/...es/biggrin.pnghttp://www.tc-cancer.com/forum/core/...es/biggrin.pnghttp://www.tc-cancer.com/forum/core/...es/biggrin.png

                          Comment

                          • richy77
                            Registered User
                            • Jan 2008
                            • 470
                            #14
                            Good luck from a fellow RPLND'er - take it easy after, but remember to get up and walk when you feel up to it.
                            Diagnosed Jan 2008 - primary retroperitoneal tumour and slight spread to lungs. AFP-400+ & BHCG-4000+
                            1/30/08 - Began 4XBEP.
                            4/25/08 - Chemo finished - AFP normalised and BHCG-3.
                            6/19/08 - Left I/O & RPLND. No active cancer found and small amount of differientiated teratoma. Markers normalised.
                            12/14/12 - Latest markers normal.

                            Comment

                            • agentc0re
                              Registered User
                              • Jun 2010
                              • 39
                              #15
                              I'm sure you've had the surgery and are in recovery mode right now. I hope that that button is treating you well. I'm shortly behind you as far as having my done. Let us know how things go and are and all that good jazz.

                              Again, hope everything went well and that you have a speedy recovery.
                              5/4/2010 - Diagnosed with TC
                              5/20/2010 - Right I/O - 1.8cm - no LVI - 70% Seminoma - 30% EC - Less than 1% Teratoma - Stage 1A
                              6/7/2010 - RPLND Scheduled. Oncologist requested for second opinion.
                              6/15/2010 - Oncologist seen and Chemo not an option for stage 1A.
                              7/6/2010 - Right sided template RPLND - Surgeon Dr. Stephenson(Huntsman Cancer Center)
                              7/12/2010 - Pathology clean on surveillance.
                              11/11/2010 - Clean

                              Comment

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