3rd recurrence, elevated hCG & AFP, enlarge lymph nodes

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  • Jim cg721
    Registered User
    • Jun 2010
    • 5

    3rd recurrence, elevated hCG & AFP, enlarge lymph nodes

    Hoping for some insight. My history:
    2010
    Left side Orchiectomy
    95% embrynal carcinoma EC stage 1 non-seminoma
    RPLND left template
    21 nodes removed and all negative

    2013
    hCG 4.0, AFP 3.6

    Right side Orchiectomy
    100% (pure) seminoma T1
    Tomotherapy Radiation

    2014
    hCG 0, AFP 1.0

    2017
    hCG 0, AFP 1.0

    April 2019
    hCG 3.5, AFP 4.2

    CT results: 2 enlarged lymph nodes. Paraaortic right side, One is 17x9 mm,One is 17x11 mm

    I'm scheduled to see a cancer urologist. With elevated tumor markers and enlarged lymph nodes, I'm guessing they will want a PET scan.
    And I'm fully expecting them to suggest chemo.
    My question is if they could want to do a 2nd RPLND??
  • GratefulGuy
    Registered User
    • Mar 2017
    • 19

    #2
    Sorry to hear you've had such a hard time dealing with this. From my limited knowledge I would think they would do chemo first and then decide on an RPLND depending on what size the nodes are. As far as I know chemo is very effective in eliminating seminoma. Which is should be as embryonal would have come back much quicker. Hopefully some folks with more experience will reply.

    Comment

    • Davepet
      Registered User
      • Mar 2010
      • 4459

      #3
      My understanding is that RPLND is in trial for pure seminoma, but not yet "approved", so I would expect chemo.
      Jan, 1975: Right I/O, followed by RPLND
      Dec, 2009: Left I/O, followed by 3xBEP

      Comment

      • Derjayger
        Registered User
        • Jun 2018
        • 8

        #4
        I just want to encourage you, because technically you don't have a 3rd relapse (which would be a quite complicated case), but probably "only" the first one (after radiotherapy), and the miracle weapon chemotherapy hasn't been shot yet.

        Nevertheless, I would write to an expert on TC because your case is quite rare.

        Comment

        • Davepet
          Registered User
          • Mar 2010
          • 4459

          #5
          Derjayger is correct. You have had two primary TC's ( It never spreads from one to the other, but statistically, every guy that has one TC is somewhat more likely to get another). Since the node are on the right side, they are linked to the second TC & are the first relapse, In any event your odds of a complete cure are excellent at this point, but the journey may not be a lot of fun, just know that many have gone there before.
          Last edited by Davepet; 05-27-19, 03:50 PM.
          Jan, 1975: Right I/O, followed by RPLND
          Dec, 2009: Left I/O, followed by 3xBEP

          Comment

          • Jim cg721
            Registered User
            • Jun 2010
            • 5

            #6
            Thanks for your insights! I see what you mean by it being a first relapse of the right side. From what I’ve read so far, it seems that BEP x3 is common. Guess I will just have to wait and see what they recommend. Thanks again.

            Comment

            • Mike
              Administrator
              • Apr 2008
              • 973

              #7
              Where have you been treated and more specifically where was the RPLND done? A left sided-template should have removed the para-aortic nodes, which are on the side of the aorta (or your left side). So, I am a bit confused on the mention of sides and nodes. The para-aortic nodes are more commonly a landing zone for testicular cancers involving the left testicle but some right sided testicular cancers will show up in the para-aortic area as well. With it being two nodes, I think that chemotherapy is what would be recommended, over another RPLND or without definitive tissue to know the pathology for sure, repeated radiation therapy. I suppose another question would be is could this be a teratoma from the first left-side testicular cancer since the markers are really not elevated significantly that I think most experts would say, just based on the markers, that it was relapse. In that situation, perhaps a repeat RPLND would be the ay to proceed to at least stage things pathologically. I would highly suggest seeking the advice of a highly experienced center if you haven't done so already as they may have more experience in helping sort out what exactly what might be going on, which could also include repeat imaging.

              Mike
              Oct. 2005 felt lump but waited over 7 months.
              06.15.06 "You have Cancer"
              06.26.06 Left I/O
              06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
              06.30.06 It's Official - Stage I Seminoma
              Surveillance...
              Founded the Testicular Cancer Society
              6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

              For some reason I do not get notices of private messages on here so please feel free to email me directly at [email protected] if you would like to chat privately so as to avoid any delays.

              Comment

              • Davepet
                Registered User
                • Mar 2010
                • 4459

                #8
                Well according to Wikipedia, there are both right & left aortic nodes? :

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

                Comment

                • Mike
                  Administrator
                  • Apr 2008
                  • 973

                  #9
                  Originally posted by Davepet View Post
                  Well according to Wikipedia, there are both right & left aortic nodes? :

                  https://en.wikipedia.org/wiki/Paraaortic_lymph_nodes

                  I believe what Wikipedia is saying is that there are "para-aortic" nodes that are lateral on the right and left of the aorta. The ones lateral on the left side of the aorta are commonly referred to as the peri-aortic or para-aortic nodes. The ones lateral on the right side of the aorta are more commonly referred to as the interaortocaval nodes as they lie between the aorta and vena cava. Or at least that is my understanding.

                  Mike
                  Oct. 2005 felt lump but waited over 7 months.
                  06.15.06 "You have Cancer"
                  06.26.06 Left I/O
                  06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
                  06.30.06 It's Official - Stage I Seminoma
                  Surveillance...
                  Founded the Testicular Cancer Society
                  6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

                  For some reason I do not get notices of private messages on here so please feel free to email me directly at [email protected] if you would like to chat privately so as to avoid any delays.

                  Comment

                  • biwi
                    Registered User
                    • Jun 2015
                    • 861

                    #10
                    Originally posted by Derjayger View Post
                    I just want to encourage you, because technically you don't have a 3rd relapse (which would be a quite complicated case), but probably "only" the first one (after radiotherapy), and the miracle weapon chemotherapy hasn't been shot yet.

                    Nevertheless, I would write to an expert on TC because your case is quite rare.
                    I agree with this.

                    Your prognosis is still probably very good, however your case has intricacies that your regular oncologists are unlikely to have experience in. I highly suggest enlisting a TC expert at this point to see what they recommend.
                    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!
                    10/22/19: all clears up to this date!
                    4/8/24: stopped monitoring something like 2 years ago, still all clear!

                    Comment

                    • Mike
                      Administrator
                      • Apr 2008
                      • 973

                      #11
                      Our friends at the TCRC keep a reference list of experts if it helps. http://thetcrc.org/experts.html Dr. Einhorn at Indiana University for example is more than willing to help get things sorted.

                      Mike
                      Oct. 2005 felt lump but waited over 7 months.
                      06.15.06 "You have Cancer"
                      06.26.06 Left I/O
                      06.29.06 Personal Cancer Diagnosis Date: Got my own pathology report from medical records.
                      06.30.06 It's Official - Stage I Seminoma
                      Surveillance...
                      Founded the Testicular Cancer Society
                      6.29.13 Summited Mt. Kilimanjaro for 7th Cancerversary

                      For some reason I do not get notices of private messages on here so please feel free to email me directly at [email protected] if you would like to chat privately so as to avoid any delays.

                      Comment

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