Post RPLND pathology and options

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  • Joe.shupe22
    Registered User
    • Nov 2016
    • 169

    Post RPLND pathology and options

    6 days post RPLND (robotic bilateral) and we have a half assed pathlogy report, but its a report nonetheless. I am officially pN1. 2 cancerous nodes, one measuring 1.8cm. The other dimension was not specified (wtf?). The kicker is that the pathology report also did not state which type of cancer is involved in the lymph nodes. I assume embryonal, but we dont like to make assumptions around here . My surgeon has requested either a second pathology report or a more specific of the first that defines the types within the nodes.

    This puts me at stage IIA T2 N1 M0 S0. Tumor was multifocal, 100% EC (2.1cm with lvi) with 2 other nodules being 100% classic seminoma

    What would be typical options here? I have already sent an email to Dr E but received an auto response that he will be out of the office until february.
    11/16- Pain/lump in R testicle 11/16- US finds multiple masses 11/16- Right I/O path multifocal largest nodule 2.1cm 100% EC with LVI/rete testis invasion. 12/16- Ct/markers normal stage 1b 12/16- Ct/markers normal 1/17- rplnd pN1 2 nodes 1.8/1.4 cm EC Stage IIA 2/20 ct/markers clear! 3/1/17 started androgel for low T 4/27/17 Relapsed. Multiple lymph nodes in mesentary and few nodes in retriperitoneum. Start 3x bep. Ct after 2nd cycle revealed all masses already resolved! Continue last cycle! 6/26/17 Finished 3x bep!
  • S P
    Administrator
    • Feb 2011
    • 1650

    #2
    I just wrote a SIX year update in my big RPLND thread, and a primary RPLND is what I would have done if I could do it all over again.

    For pN1, you can do surveillance (preferred), or 2 rounds of either BEP or EP chemotherapy, whatever you're the most comfortable with.

    Edit: How many total nodes were removed? Assumptions here are that a full open RPLND has been done and not robotic. The full open procedure tends to be more curative since they can remove a lot more nodes. They remove anywhere from 40 to over 80-90 lymph nodes in the full open procedure.
    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

    • Joe.shupe22
      Registered User
      • Nov 2016
      • 169

      #3
      They removed 40 lymph nodes. I also questioned the accuracy of the robotic procedure however my surgeon was confident that robotic would be a very good option, especially since all my ct scans had been clear. Hopefully he got them all, or atleast enough for the procedure to be worthwhile. I will say, Im 6 days post op and have very little pain, little bit of swelling but nothing that isnt being managed my motrin (which I just started taking today, it was a long 6 day wait lol). I hate norco :-/. But 3 days post op I was able to tinker in my garage confortably, just to be on my feet and put a few tools away, sweep, that sorta thing.

      Now, I figured that 2x bep or 2x ep would be my options so thats no surprise. I know bleomycin is the difference between the two, but where is a good place to find some good info on each treatment? Is there anyone here that could chime in on either treatment?
      11/16- Pain/lump in R testicle 11/16- US finds multiple masses 11/16- Right I/O path multifocal largest nodule 2.1cm 100% EC with LVI/rete testis invasion. 12/16- Ct/markers normal stage 1b 12/16- Ct/markers normal 1/17- rplnd pN1 2 nodes 1.8/1.4 cm EC Stage IIA 2/20 ct/markers clear! 3/1/17 started androgel for low T 4/27/17 Relapsed. Multiple lymph nodes in mesentary and few nodes in retriperitoneum. Start 3x bep. Ct after 2nd cycle revealed all masses already resolved! Continue last cycle! 6/26/17 Finished 3x bep!

      Comment

      • S P
        Administrator
        • Feb 2011
        • 1650

        #4
        40 nodes is a pretty good number. You can look up side-effects and concerns for each drug at the Chemocare.com website, which was founded and run by figure skating champion Scott Hamilton, who is also a testicular cancer survivor.

        http://www.chemocare.com/chemotherap...bleomycin.aspx

        Primary RPLND followed by adjuvant chemo is not a path that too many take, but a very smart choice to consider. The difference between BEPx2 and EPx2 is probably splitting hairs. The EP dosage is the same between the two, so you just get the Bleomycin as extra. If you have any specific concerns about Bleomycin then do EP, but if not just do BEP. Maybe there's someone here that's gone this route and could provide some feedback.
        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

        • Joe.shupe22
          Registered User
          • Nov 2016
          • 169

          #5
          I was hoping to lower recurrence rate by doing rplnd first and avoid chemo if I could. With having a 50% chance of relapse, I didnt want surveillance either. RPLND lowers recurrence rate considerably, less than 20% I believe for my case. So it seemed like a viable option. I'm still not sold on chemo just yet, I really am wanting to know what type was in the nodes. If it was 100% embryonal then I may proceed with chemo, but I may not...we'll see. Just getting back to more research lol. By all rights I could absolutely be cured right now. But even with 2 nodes with cancer, 1 nearing 2cm I still had normal markers. I had normal markers pre orchiechtomy aswell, so my cancer is just not producing markers. Which means if I dont do chemo, I will basically be waiting for it to show up on ct, I wont rely on markers at all. Normal markers mean nothing to me lol
          11/16- Pain/lump in R testicle 11/16- US finds multiple masses 11/16- Right I/O path multifocal largest nodule 2.1cm 100% EC with LVI/rete testis invasion. 12/16- Ct/markers normal stage 1b 12/16- Ct/markers normal 1/17- rplnd pN1 2 nodes 1.8/1.4 cm EC Stage IIA 2/20 ct/markers clear! 3/1/17 started androgel for low T 4/27/17 Relapsed. Multiple lymph nodes in mesentary and few nodes in retriperitoneum. Start 3x bep. Ct after 2nd cycle revealed all masses already resolved! Continue last cycle! 6/26/17 Finished 3x bep!

          Comment

          • Scott R
            Registered User
            • Nov 2016
            • 33

            #6
            So i just finished 2xBEP for 100% EC. It was a no brainer to start chemo

            Comment

            • RJKD
              Registered User
              • Jul 2015
              • 740

              #7
              Hey Joe, pN1 doesn't sound bad at all. I would get the most accurate relapse rate you can after you receive your pathology. If it is in fact 20%, then I would do surveillance. I already know what Einhorn will say though. He recommends surveillance in this case.

              As for your tumor markers, they can certainly become elevated even if they were not elevated initially. Germ cells are primitive cells that can change forms.
              Diagnosed at age 31. Treated in NYC. Now living in Ottawa, ON, Canada.

              7/1/2015: felt tiny lump on side of R testicle
              7/30/2015: Ultrasound shows 2 intra-testicular masses.
              7/31/2015: tumor markers normal, CXR clear
              8/5/2015: R orchiectomy
              8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
              8/14/2015: CT abdomen/pelvis clear, Stage 1b
              8/24/2015: started 1 x BEP

              Comment

              • Joe.shupe22
                Registered User
                • Nov 2016
                • 169

                #8
                What are treatment options for relapse after rplnd and no chemo has been done prior? Would it still be 3x bep or 4x ep?
                11/16- Pain/lump in R testicle 11/16- US finds multiple masses 11/16- Right I/O path multifocal largest nodule 2.1cm 100% EC with LVI/rete testis invasion. 12/16- Ct/markers normal stage 1b 12/16- Ct/markers normal 1/17- rplnd pN1 2 nodes 1.8/1.4 cm EC Stage IIA 2/20 ct/markers clear! 3/1/17 started androgel for low T 4/27/17 Relapsed. Multiple lymph nodes in mesentary and few nodes in retriperitoneum. Start 3x bep. Ct after 2nd cycle revealed all masses already resolved! Continue last cycle! 6/26/17 Finished 3x bep!

                Comment

                • Joe.shupe22
                  Registered User
                  • Nov 2016
                  • 169

                  #9
                  And does anyone know of some good literature to find/calculate relapse rate for my case?
                  11/16- Pain/lump in R testicle 11/16- US finds multiple masses 11/16- Right I/O path multifocal largest nodule 2.1cm 100% EC with LVI/rete testis invasion. 12/16- Ct/markers normal stage 1b 12/16- Ct/markers normal 1/17- rplnd pN1 2 nodes 1.8/1.4 cm EC Stage IIA 2/20 ct/markers clear! 3/1/17 started androgel for low T 4/27/17 Relapsed. Multiple lymph nodes in mesentary and few nodes in retriperitoneum. Start 3x bep. Ct after 2nd cycle revealed all masses already resolved! Continue last cycle! 6/26/17 Finished 3x bep!

                  Comment

                  • RJKD
                    Registered User
                    • Jul 2015
                    • 740

                    #10
                    Originally posted by Joe.shupe22 View Post
                    What are treatment options for relapse after rplnd and no chemo has been done prior? Would it still be 3x bep or 4x ep?

                    Yes, upon relapse, almost certainly it will be either 3 x BEP or 4 x EP. However, very rarely one would need 4 x BEP, like in the case attached. This is very rare though.
                    Diagnosed at age 31. Treated in NYC. Now living in Ottawa, ON, Canada.

                    7/1/2015: felt tiny lump on side of R testicle
                    7/30/2015: Ultrasound shows 2 intra-testicular masses.
                    7/31/2015: tumor markers normal, CXR clear
                    8/5/2015: R orchiectomy
                    8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
                    8/14/2015: CT abdomen/pelvis clear, Stage 1b
                    8/24/2015: started 1 x BEP

                    Comment

                    • Joe.shupe22
                      Registered User
                      • Nov 2016
                      • 169

                      #11
                      Dr. E chimed in already! I seriously do love that man. I have never waited more than 12 hours for a reply.

                      "Looks like you made a wise choice going for the surgery since those 2 nodes were not going to spontaneously disappear. Reasonably high cure rate with surgery and virtually 100% cure rate with BEP if recurrence. I would just observe."

                      I am leaning more and more towards surveillance! I am finding a 10-20% relapse rate for pn1 nsgct patients. I am really....really happy about this!!!
                      11/16- Pain/lump in R testicle 11/16- US finds multiple masses 11/16- Right I/O path multifocal largest nodule 2.1cm 100% EC with LVI/rete testis invasion. 12/16- Ct/markers normal stage 1b 12/16- Ct/markers normal 1/17- rplnd pN1 2 nodes 1.8/1.4 cm EC Stage IIA 2/20 ct/markers clear! 3/1/17 started androgel for low T 4/27/17 Relapsed. Multiple lymph nodes in mesentary and few nodes in retriperitoneum. Start 3x bep. Ct after 2nd cycle revealed all masses already resolved! Continue last cycle! 6/26/17 Finished 3x bep!

                      Comment

                      • S P
                        Administrator
                        • Feb 2011
                        • 1650

                        #12
                        Awesome news! Very happy for you. Chemotherapy is nasty. If you can avoid it with surveillance only, do it.
                        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

                        • Joe.shupe22
                          Registered User
                          • Nov 2016
                          • 169

                          #13
                          Update:

                          So I had a visit with the medical oncologist today. Options were given (2x bep, 2x ep, surveillance) but he agrees with and prefers surveillance aswell. So its official. Hoping this thing is gone for good, fingers crossed for clear scans from here on out!
                          11/16- Pain/lump in R testicle 11/16- US finds multiple masses 11/16- Right I/O path multifocal largest nodule 2.1cm 100% EC with LVI/rete testis invasion. 12/16- Ct/markers normal stage 1b 12/16- Ct/markers normal 1/17- rplnd pN1 2 nodes 1.8/1.4 cm EC Stage IIA 2/20 ct/markers clear! 3/1/17 started androgel for low T 4/27/17 Relapsed. Multiple lymph nodes in mesentary and few nodes in retriperitoneum. Start 3x bep. Ct after 2nd cycle revealed all masses already resolved! Continue last cycle! 6/26/17 Finished 3x bep!

                          Comment

                          • Joe.shupe22
                            Registered User
                            • Nov 2016
                            • 169

                            #14
                            Final pathology for lymph nodes was 40 lymph nodes removed, 2 containing 100% embryonal. 1 node 1.8cm and the other 1.4cm.
                            11/16- Pain/lump in R testicle 11/16- US finds multiple masses 11/16- Right I/O path multifocal largest nodule 2.1cm 100% EC with LVI/rete testis invasion. 12/16- Ct/markers normal stage 1b 12/16- Ct/markers normal 1/17- rplnd pN1 2 nodes 1.8/1.4 cm EC Stage IIA 2/20 ct/markers clear! 3/1/17 started androgel for low T 4/27/17 Relapsed. Multiple lymph nodes in mesentary and few nodes in retriperitoneum. Start 3x bep. Ct after 2nd cycle revealed all masses already resolved! Continue last cycle! 6/26/17 Finished 3x bep!

                            Comment

                            • RJKD
                              Registered User
                              • Jul 2015
                              • 740

                              #15
                              Great news! Surveillance to me is the only logical choice.
                              Diagnosed at age 31. Treated in NYC. Now living in Ottawa, ON, Canada.

                              7/1/2015: felt tiny lump on side of R testicle
                              7/30/2015: Ultrasound shows 2 intra-testicular masses.
                              7/31/2015: tumor markers normal, CXR clear
                              8/5/2015: R orchiectomy
                              8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
                              8/14/2015: CT abdomen/pelvis clear, Stage 1b
                              8/24/2015: started 1 x BEP

                              Comment

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