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  • #31
    Originally posted by RJKD View Post


    Tumor markers must be done post-orchiectomy even though they were normal pre-orchiectomy. They must also be done right prior to doing adjuvant therapy to ensure you are not stage 1s. The suggestion that tumor markers are not useful for you because you had normal markers pre-orchiectomy is incorrect. Germ cells are primitive cells that can change forms and start releasing tumor markers even if you've never had them be positive before.

    For staging, is the tumor marker level always taken post-orchiectomy? In other words if you start with high tumor markers but return to normal post-orchiectomy would that be called stage Ia?
    Age 31 - Portland, OR
    01NOV16- Pain in right testicle, palpable mass
    13NOV16- R I/O. Markers normal
    06NOV16 - CT scan clear
    27NOV16- Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
    09DEC16 - Started 1xBEP. Neutropenic at day 15; Worst part for me was bleo (allergic).
    03JAN17- Ended 1xBEP; start surveillance
    18MAR17-2nd pathology report shows 90% EC , 10% seminoma

    Comment


    • #32
      Originally posted by mcintoda View Post


      For staging, is the tumor marker level always taken post-orchiectomy? In other words if you start with high tumor markers but return to normal post-orchiectomy would that be called stage Ia?

      Yes, that's correct. That would be called stage 1a (as long as there is no LVI and clear CT scan).
      Canadian. Diagnosed at age 31. Treated in NYC. Now living in Columbus, OH.

      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


      • #33
        I'm post-orchiectomy and in adjuvant chemo now. Am I facing EC only and teratoma as possibility for relapse, or other types such as chorio and yolk sac as well?

        ---------------
        1NOV16- Pain in right testicle, palpable mass
        13NOV16- R I/O. Markers normal
        26NOV16 - CT scan clear
        27NOV16- Clinical Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
        18DEC16- Markers normal
        19DEC16- Started 1xBEP. Nausea was severe
        Age 31 - Portland, OR
        01NOV16- Pain in right testicle, palpable mass
        13NOV16- R I/O. Markers normal
        06NOV16 - CT scan clear
        27NOV16- Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
        09DEC16 - Started 1xBEP. Neutropenic at day 15; Worst part for me was bleo (allergic).
        03JAN17- Ended 1xBEP; start surveillance
        18MAR17-2nd pathology report shows 90% EC , 10% seminoma

        Comment


        • #34
          Hey David,

          EC is a pluripotent cell, it can "transform" into other specialized cells, such as chorio, yolk sac and teratoma.

          If you look at the article published my MSK authors (see my first post), you'll see that surgeons found in the RPLN from pure EC TC mostly EC, but some teratomatous elements and yolk sac.

          Keep in mind that your relapse risk after BEP x 1 is quite low.

          Jean-Philippe
          December 15, 2015 : Right I/O. Markers normal.
          December 24, 2015 : Merry Christmas ! 100 % pure EC, no LVI.
          January 7, 2016 : CT scan : 2 RPLN of 8 and 9 mm
          February 2016 : Markers normal.
          March 2016 : Markers normal.
          April 2016 : Abnormal B-HCG (43). 14 mm (from 8) and 10 mm (from 9) lymph nodes.
          April 25, 2016 : Happy birthday ! Relapsed confirmed.
          May 2, 2016 : BEP x 3 begins.
          July 3, 2016 : BEP x 3 ends.
          July 2016 : Serum tumor markers normal. 10 mm (from 14) and 6 mm (from 10) lymph nodes. Back on surveillance !
          December 23, 2016 : Merry Christmas ! Serum tumor markers normal. 6.8 mm (from 10) and no more visible (from 6) lymph nodes. Surveillance continues.

          Comment


          • #35
            Originally posted by mcintoda View Post
            I'm post-orchiectomy and in adjuvant chemo now. Am I facing EC only and teratoma as possibility for relapse, or other types such as chorio and yolk sac as well?

            ---------------
            1NOV16- Pain in right testicle, palpable mass
            13NOV16- R I/O. Markers normal
            26NOV16 - CT scan clear
            27NOV16- Clinical Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
            18DEC16- Markers normal
            19DEC16- Started 1xBEP. Nausea was severe

            Mcintoda, where are you being treated? Just curious.
            Canadian. Diagnosed at age 31. Treated in NYC. Now living in Columbus, OH.

            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


            • #36
              Originally posted by RJKD View Post


              Mcintoda, where are you being treated? Just curious.

              RJKD, I'm in Portland, OR. I'm on active surveillance now. Testosterone 4 weeks post-orchiectomy was 225. What kind of time frame post-chemo is testosterone re-assessed?

              Before my diagnosis (3-4 months before) I was feeling fatigued, had weight gain over past year and in general "not feeling well." In hindsight I am wondering if these are symptoms of low-testosterone. Its not clear if my tumor was large enough or involved enough to affect the testicle.

              Last edited by mcintoda; 02-26-17, 08:36 PM.
              Age 31 - Portland, OR
              01NOV16- Pain in right testicle, palpable mass
              13NOV16- R I/O. Markers normal
              06NOV16 - CT scan clear
              27NOV16- Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
              09DEC16 - Started 1xBEP. Neutropenic at day 15; Worst part for me was bleo (allergic).
              03JAN17- Ended 1xBEP; start surveillance
              18MAR17-2nd pathology report shows 90% EC , 10% seminoma

              Comment


              • #37
                Hey Mcintoda, Since you had 1 x BEP, I would not recheck testosterone for at least 3-4 months after finishing that treatment. BEP can cause a temporary decrease in testosterone, even 1 cycle can do this. From my experience, this almost always recovers. How's your liver now? I would be very surprised if it is not normal. Our stories are super similar by the way! Both diagnosed at age 31! Both predominantly EC, similar sized tumors, and both 1 x BEP.
                Canadian. Diagnosed at age 31. Treated in NYC. Now living in Columbus, OH.

                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


                • #38
                  I'm trying to get a handle on what the next steps were to be if I were to have a relapse. The biggest stress after my initial diagnosis was the fury of activity required to figure out what the right choice to make is with limited information. Understanding the next treatment steps gives me confidence.

                  My oncologist said that if a relapse were to occur it probably would be chemoresistant (after 1xBEP). I think this means that the EC transformed to a chemoresistant teratoma (either because it was there already or because the chemo caused a cell differentiation). My understanding is that EC, yolk sac and choriocarcinoma are all very chemo-sensitive.

                  How would they assess that the relapse is chemo-resistant? Or is relapse after any chemo (including 1xBEP) by definition chemo-resistant? I would guess they would look at:
                  • Tumor marker presence
                  • Tumor marker growth rate
                  • Imaging growth rate
                  My understanding is that teratoma treatment would be surgery (if operable). Or would 3xBEP followed by surgery as needed be the standard of care?

                  What does it mean that my markers were never elevated? Is it that it never exceeded "normal" range limits due to early stage and/or no LV involvement, or is it somehow a tumor type that doesn't secrete these markers?
                  Last edited by mcintoda; 03-05-17, 06:12 PM.
                  Age 31 - Portland, OR
                  01NOV16- Pain in right testicle, palpable mass
                  13NOV16- R I/O. Markers normal
                  06NOV16 - CT scan clear
                  27NOV16- Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
                  09DEC16 - Started 1xBEP. Neutropenic at day 15; Worst part for me was bleo (allergic).
                  03JAN17- Ended 1xBEP; start surveillance
                  18MAR17-2nd pathology report shows 90% EC , 10% seminoma

                  Comment


                  • #39
                    I hope someone chimes in about lack of tumor markers. I know there are some sites that explain when HCG or AFP is emitted by certain nonseminoma tumors. Hang in there!
                    17 year old Grant dx 12/21/16
                    pre/o markers 12/21/16- HCG:1065.15,AFP:298.8,LDH:1119
                    pre/o CT Scan 12/22/16 normal
                    r/o 12/22/16
                    Post r/o Elevated Markers with INCREASE 4 weeks post r/o;
                    PATHLOGY: mixed maligent germ cell 8.6 x 6.2 x 5.9 cm

                    -80% Embryonal, 10% Yolk Sac, 5% Teratoma, 5% Choriocarcinoma w/LVI within Spermatic Cord and invasion into Rete Testis
                    2nd CT scan on 1/24/17 3 nodes 2 over 2.5, one over 3.5
                    BEP x 3
                    Tumor makrers at start of Cycle 1 1/27/17 HCG 899.68 AFP 50.6
                    Tumor markers at start of Cycle 2 on 2/17/17 HCG 5.96 AFP 10.2

                    Comment


                    • #40
                      Originally posted by mcintoda View Post
                      I'm trying to get a handle on what the next steps were to be if I were to have a relapse. The biggest stress after my initial diagnosis was the fury of activity required to figure out what the right choice to make is with limited information. Understanding the next treatment steps gives me confidence.

                      My oncologist said that if a relapse were to occur it probably would be chemoresistant (after 1xBEP). I think this means that the EC transformed to a chemoresistant teratoma (either because it was there already or because the chemo caused a cell differentiation). My understanding is that EC, yolk sac and choriocarcinoma are all very chemo-sensitive.

                      How would they assess that the relapse is chemo-resistant? Or is relapse after any chemo (including 1xBEP) by definition chemo-resistant? I would guess they would look at:
                      • Tumor marker presence
                      • Tumor marker growth rate
                      • Imaging growth rate
                      My understanding is that teratoma treatment would be surgery (if operable). Or would 3xBEP followed by surgery as needed be the standard of care?

                      What does it mean that my markers were never elevated? Is it that it never exceeded "normal" range limits due to early stage and/or no LV involvement, or is it somehow a tumor type that doesn't secrete these markers?

                      According to the latest UK study with stage 1b patients (you are 1a so probably slightly better odds), after 1 x BEP there is a 1.3% of needing further chemotherapy. There's also a 1.3% chance of needing RPLND. Overall, the relapse rate was 2.6%.

                      If a relapse occurs and you are marker negative and your lymph nodes are <2 cm, then RPLND can be done.

                      If you are marker positive, it would be 3 x BEP. So what your doc says about chemo-resistance is incorrect.

                      If your tumor never caused tumor markers to elevate, that doesn't mean it would never do that. Germ cells are very primitive and can change forms. If you relapse, it may be discovered by tumor marker elevation.

                      Chances are highly in your favor that you don't have to worry about anything anymore.
                      Canadian. Diagnosed at age 31. Treated in NYC. Now living in Columbus, OH.

                      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


                      • #41
                        To elaborate a bit more on markers: I don't doubt that a recurrence might present with elevated markers, even though none were originally, but it also can't be assumed that it will. Markers are only really useful when positive. Negative markers are better than positive ones, but really don't tell us we are cancer free without some other tests.
                        Dave
                        Jan, 1975: Right I/O, followed by RPLND
                        Dec, 2009: Left I/O, followed by 3xBEP

                        Comment


                        • #42
                          4 months after orchiectomy I got a 2nd opinion on my pathology (delays because of switched insurance etc).

                          My first path report has:
                          -100% EC, 1.3 cm
                          -"background of intratubular germ cell neoplasia"
                          -No vascular invasion

                          My new path report (by GU pathologists) has:
                          -90% EC and 10% seminoma, 1.3 cm
                          -"Focal pagetoid involvement of the rete testis by seminoma / germ cell neoplasia in situ (GCNIS*)"
                          -No vascular invasion

                          *
                          germ cell neoplasia in situ is apparently the new accepted name for intratubular germ cell neoplasia as of 2016.

                          So guys, I am no longer pure EC!

                          I don't think this changes really my decision pathway or next steps. Looking at the Princess Margaret papers which talk about pure embryonal Clinical Stage I was really helpful for me. Hopefully in the future they develop models based on tumor volume or something more quantitative.

                          Age 31 - Portland, OR
                          01NOV16- Pain in right testicle, palpable mass
                          13NOV16- R I/O. Markers normal
                          06NOV16 - CT scan clear
                          27NOV16- Stage Ia non-seminoma, 1.3cm, 100% EC, no LVI
                          09DEC16 - Started 1xBEP. Neutropenic at day 15; Worst part for me was bleo (allergic).
                          03JAN17- Ended 1xBEP; start surveillance
                          18MAR17-2nd pathology report shows 90% EC , 10% seminoma

                          Comment


                          • #43
                            So the relapse rate of pure EC is 40-50%?

                            56 patients with pure EC (15 % of total cohort)
                            23 patients with LVI and pure EC : 12 relapsed (relapse rate : 52 %)
                            33 patients without LVI and pure EC : 15 relapsed (relapse rate : 45 %)

                            Are there any more data to support it? 56 patient seems to be small pool. 🤔
                            30/12/16 2.5cm on right testis, 6mm on left testis.( B-HCG 0.34 <2,AFP 4.5 <7)

                            24/01/17 Right I/O
                            (Pure embryonal carcinoma, no lymphovascular, no invasion of tunica albuginea, rate testis, epididymis, spermatic cord. )

                            14/02/17 AFP 2<7, 6mm on left testis
                            17/02/17 Survelliance
                            06/03/17 CT scan (Visible lymph nodes in the mediastinum . probable benign reactive appearance)

                            Comment


                            • #44
                              Hi, I had 100% EC with LVI (5/2015). Choosen surveillance and still continue...
                              04/24/2015 – pain in the right testicle – USG confirmed mass, blood results B-HCG = 12, AFP = 6.14, LDH = 9
                              05/05/2015 – I/O (100% Embryonal carcinoma, LVI presented)
                              05/06/2015 – post-operative CT scan negative
                              6/2015 - surveillance (my decision)
                              7/2015, 9/2015 - markers negative
                              9/2015 - 2nd CT negative (re-check in 2/2016 found node 16x12mm!!)
                              10/2015, 1/2016 - markers negative
                              2/2016 - 3rd CT scan - 2 nodes (border) - 12x8mm, 13x9mm
                              3/2016 - markers negative
                              5/2016 - next check - markers
                              6/2016 - CT scan...

                              Comment

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